Posted 05/14/2012
You’re pretty sure you know your body and you tell your doctor you’re just not feeling right. You’re tired, maybe a little depressed, a bit achy. Maybe your digestion is “off.” The list of foods you can’t seem to enjoy is definitely longer. Your doctor’s empathic, not at all dismissive of your symptoms, but after a physical exam and some apparently appropriate tests she can’t find anything really wrong.
On the surface, this is reassuring. After all, the main reason we do go to doctors is to ascertain that nothing serious is going on. Still, could she be overlooking something?
After decades of treating patients with longstanding but undiagnosed chronic symptoms, here’s the first of six overlooked diagnoses I see most frequently in our patients at WholeHealth Chicago.
Low Levels of Vitamin B-12
One of the eight B vitamins, B-12 is involved in the metabolism of every cell in your body. Years ago B-12 was called “maturation factor” because cells need B-12 to mature from being young and ineffectual whippersnappers to fully functioning and mature.
B-12 deficiencies affect three major systems in your body: your blood, nervous system, and, less often, gastrointestinal tract. These three are targets because their cells either have a high turnover rate (blood and intestinal lining) or need a lot of B-12 to function smoothly (nervous system). The symptoms of low B-12 levels are related to each of these areas.
- Low B-12’s effect on your blood is a specific type of anemia called megaloblastic anemia (as distinct from the more common iron deficiency anemia). A megaloblast is an immature, undeveloped red blood cell, large and bulky (megalo=large, blast=immature form). Remember, B-12 is needed for this cell to mature, so with insufficient B-12 megaloblasts accumulate in your blood. Symptoms are the same as for anemia from any cause, including fatigue, breathlessness, and lightheadedness. Your skin becomes a pale yellow, most likely because the red cells that do make it to maturity are very fragile and easily broken, releasing their yellow bilirubin pigment.
- In your nervous system, B-12 deficiency causes symptoms affecting your nerves (numbness, tingling, tremors, balance problems) and your mind (depression, brain fog, mood swings, and, in rare cases, hallucinations and psychosis).
- In your gastrointestinal tract, you might experience digestive symptoms and weight loss because you’re not absorbing food efficiently.
The irony is that with all these there’s usually just one predominant symptom, and making a connection to low B-12 can easily be delayed until other symptoms start to appear. For example, if your only symptom is tingling in your hands, you might undergo all sorts of diagnostic tests before your doctor thinks “Maybe we should check her B-12 level.”
What causes B-12 deficiency?
The list of causes is lengthy, but by far the most frequent culprit is a dietary one. Vegetarians who aren’t paying attention to the B-12 in their food choices will have downward-drifting B-12 levels, and virtually all vegans not taking Vitamin B-12 supplements ultimately develop deficiencies. Even the various vegan organizations acknowledge it’s not possible to get adequate B-12 while following a strictly vegan diet, and that’s because the richest sources are animal products.
Other causes of B-12 deficiency include pernicious anemia, an uncommon (and spookily named) autoimmune disease that destroys parietal stomach cells. These cells produce a substance called intrinsic factor, necessary for B-12 absorption. Also, since you need stomach acid to absorb B-12, long-term use of acid-suppressing proton pump inhibitors (Nexium, etc.) can lead to B-12 deficiency, as can chronic intestinal conditions like Crohn’s disease, celiac disease, and intestinal parasites.
The missed diagnosis
The main danger of missing this diagnosis is that (while quite rare) the damage to your nerves and even brain can be permanent. Other serious consequences: your anemia can get so severe it causes heart failure and collapse. Or you could be misdiagnosed with a major depressive disorder or even psychosis and take unneeded psychiatric medications for months (or years) before someone notices you look yellow-ish and you’re finally diagnosed with megaloblastic anemia.
There are four reasons why this diagnosis is missed:
- Although it’s not an expensive test, B-12 isn’t measured during routine blood tests. Doctors generally don’t order a B-12 evaluation if there’s no evidence of anemia (which would be picked up on a routine blood test). However, the fatigue and nervous system and gastrointestinal symptoms can precede anemia by months.
- Doctors rarely ask (and patients rarely volunteer) information about their eating habits. In medical school, we’re taught that the US diet is “plenty good enough to prevent any vitamin deficiencies.” To which I now respond, “Ha!” I agree most of us eat plenty of food (obesity levels are still on the rise), but it’s often food whose nutritional value has been castrated. Also, all vegetarians and vegans should be regularly tested for possible B-12 deficiency, but if your doc doesn’t know your eating habits you won’t be tested.
- Like many blood tests, there’s considerable disagreement about normal levels of B-12. Most labs test B-12 levels between 200 pg/ml (picograms per milliliter) and 800 pg/ml. Someone at 250 pg/ml would be classified as normal, but symptoms can start appearing at 350 pg/ml. In Japan, normal B-12 was recently raised to 500 pg/ml and higher. We’ll see this type of erroneous overreliance on “normals” in other frequently missed diagnoses, like hypothyroidism, vitamin D deficiency, gluten intolerance, adrenal fatigue.
- Taking the B vitamin folic acid (folate) or eating a lot of folate-containing foods without adding B-12 can actually mask the symptoms of a developing B-12 deficiency. Although folate will keep your blood count normal even if your B-12 is falling, the folate will not protect your brain and nervous system. You’ll have no evidence of megaloblastic anemia (because of the folate), but your symptoms of numbness, tingling, balance problems, and emotional issues will continue unchecked. By eating so many folate-containing green vegetables, beans, and lentils, vegetarians and vegans inadvertently mask their own slowly developing B-12 deficiency.
Treatment is easy
It’s virtually impossible to take too much B-12 as any excess of this water-soluble vitamin is eliminated via urine. Nutritional guru Alan Gaby, MD, has commented that the only way too much B-12 will kill you is if you fill your bathtub with it and drown.
Foods high in B-12 are animal products: meat, poultry, seafood, dairy, and eggs, with eggs having the least. Because all animals store B-12 in their livers, eating liver is an excellent (though not particularly popular) treatment for B-12 deficiency. Your grandmother or great-grandmother likely remembers a time when her doctor told someone in the family to eat more liver.
And since people with low B-12 are likely to also have gastrointestinal symptoms that interfere with B-12 absorption, the best way to quickly increase (and maintain) B-12 levels are with B-12 injections, chewable tablets, or the recently released nasal sprays and skin patches.
In my own practice, a deficient patient receives a series of four B-12 injections (or four B-12 containing Meyer’s Cocktails) and also starts (and maintains herself on) a daily B-12 chewable tablet. Usually within a month her levels are back to normal.
There’s more to come in the Commonly Missed Diagnoses series. Next week: overlooked diagnosis #2, vitamin D deficiency
Be well,
David Edelberg, MD
My serum b12 is 350 still experiencing serve symptoms my folate is was 2.5 low and now it’s 4.5 was feeling okay untill folate became low and now looking pale burning , confused . Memory issues doctor saying my levels within normal range I haven been tested for PA any advice on what I should do I feel very unwell the b12 I have been having is cytamen very 3 months but since folate was low no improvement seems like it isn’t woking
Kelly
Hi Kelly,
The advice that we can give regarding this is to speak with your doctor (which you have) or visit with a WholeHealth practitioner that can help you dive deeper into some of your lab values and symptoms. We wish you wellness!
WholeHealth Chicago
Can the body get rid of excess amounts of this vitamin?
alherb
Hi Alherb,
The body can eliminate extra B12 through voiding.
WholeHealth Chicago
Hello,Doctor
My vitamin D is 9.56
And B12 is 216
And im experiencing constant headaches and muscle pain plus sometimes dizziness is all these symptoms because of this
.....
Hello,
It is always a challenge to assess what is causing specific symptom having not examined a patient and taken a full history. Insufficient Vitamin B12 levels can cause muscle weakness/pain and is known to have an affect on the brain up to and including depression, anxiety and confusion. For a full evaluation, please give the office a call at 773-296-6700. Our providers are trained in how to help you manage your vitamin levels and your symptoms.
WholeHealth Chicago
I was told on 2/17/23 that I have low B12
I was told by my new VA doctor that it’s been low since 2016. I was never informed this by my last doctor even though it is in my file. My new doctor has put me on one B12 shot a month. On 2/20/23 my new doctor called me asking me to come in and do more bloodwork and a urine test. He is also confused about why no one told me about my B12 level being so low and getting shots. Now he fears some of my symptoms maybe irreversible. Should I have the same fear and is this malpractice for not telling me in at least 6 years even when I gave you my symptoms.
Victor Watson
Hi Victor,
Not being told about low Vitamin B12 for several years sounds frustrating. If you would like to discuss your health, please call the offie at 773-296-6700 to see one of our providers.
WholeHealth Chicago
I have a 17-year history of B12 deficiency, with a history of pernicious anemia. Recently, and for the very first time, during the past 17-years, a hematologist did a comprehensive eval on my blood. I tested positive (lab uses a negative/positive result) for IF Blocking Antibodies. In the past, I have done vitamins, prescribed pills, prescribed nasal spray, and the full series of IM’s but none solved the issue. In 2018, I lost the ability to walk normally and independently and was diagnosed with bilateral ataxic gait, abnormal static and dynamic gait, and abnormal Romberg Stance EO/EC. I went from using a cane, to using a cane and requiring physical assistance, to having to use a walker, and now require a wheelchair, as my condition has progressively gotten worse over the past 4 years since I had major surgery with three organs removed, i.e., appendix, right side colon, and gallbladder. I am scheduled for an Upper GI Endoscopy to see what damage exists to the lining of my stomach. My EMG/Nerve Conduction Test was normal. I do have various Lumbar issues showing up on x-rays and will be getting a Lumbar MRI. Presently, I do not have pernicious anemia, though my RBC is low and I have larger than normal RBCs. So, all this said, I fail to understand the need to take B12 injections — for the third time — when it has never worked in the past, and is there a medical condition that can still prevent B12 being absorbed even with injections? Also, with a normal EMG, can B12 deficiency still cause gait disorders? Thank you.
Christopher Cross
[…] Source: 🔗 […]
List of 10+ why do i feel worse after my b12 injection
Hello,
My wife has a genetic marker that suggests she has always been b-12 deficient. The doctor gave her a b-12 injection and she claimed to feel real good. Her aptitude, energy, and attitude was like I had never seen before. Her depression and mood swings and yelling stopped also. She then was given methyl factors drops for daily supplements. That was 90 days ago. Today she has massive mood swings worse than before, fits of crying like she is crashing down from a speed high. 2 weeks ago she went to visit family with one of our two kids and never came back! She placed a protection order on me and filed for divorce. She says she hates me like she used to say to herself when she was really depressed. I have not seen or heard from my 9 year old daughter for 2 weeks. This is very uncommon behavior to say the least. Could not having these vitamins her whole life and then suddenly injecting them into her body and then perhaps getting behind on her supplements cause this kind of neurotic behavior ? she does not seem like herself and for lack of better description almost like she’s on drugs.
Please help!!
Brad King
Hi Brad,
I would suspect the problem is with the methyl drops. She did well with the B12 shot which was probably cyanocobalamin but the methyl drops (methylcobalamin) gave her too much B12. Google the word “overmethylation” and read the list of symptoms. Hope things improve.
WholeHealth Chicago
Doc,
Please help enlighten me. I was diagnosed with Graves’ disease a year ago. Upon diagnoses my B12 was 700pg a year later it is 280pg. I eat tons of red meat and other meats. Why did it drop so much in a year. All of my CBC is normal.
Tanner Rimmer
Hi Tanner,
Sounds like you may be due for a check in with one of our WholeHealth Chicago providers. Feel free to call the office at 773-296-6700.
WholeHealth Chicago
a 3 weeks use of the TREE OF LIFE HEALTH Parkinson’s disease natural herbal formula. My husband parkinson’s disease is totally reversed! (www .treeoflifeherbalclinic. com)
mary belinda
Hi I am 56 and have had low vitamin D(less than 30) and B12(75 to 300) for many years. My latest blood test show that I have 34 vitaminD and 75 B12. However all my other blood test results are normal, with no anemia. My Homocysteine level is 22. I have none of the symptoms of B12 deficiency and i regularly run half marathons. Should i start taking b12 tablets even though I am feeling absolutely fit and healthy? By the way I am a vegetarian.
Tanuj
Hi Tanuj,
Keeping your B12 levels in a normal/optimal range has a lot of benefits, and it might be best to work with a functional medicine practitioner to figure out why your levels are consistently so low. It might also be helpful to work with our nutritionist Becca to ensure that your vegetarian diet is well balanced. Please consider an in-person or telemedicine visit with one of our functional medicine clinicians. Our Patient Services staff can be reached at 773-296-6700 and they can help you find a time to set up a consultation.
Best wishes,
Dr M
cliffmaurer
I am a 58-year-old retired paramedic in Hendersonville, North Carolina, USA. 10 months ago I was diagnosed with B12 deficiency also pernicious anemia. I was initially seen at our local hospital’s emergency dept. because I had an episode of near syncope. I also had been having some numbness in my arms and legs which extended up to my umbilical level. The numbness initially began near September 2018 as slight numbness in my small toes bilaterally and gradually spread up my legs and into my arms. I had also been having brief episodes of diplopia which would only last for seconds. These episodes had become more frequent by my diagnosis of poernicious anemia. It was discovered that my hemoglobin was 12.3 g/dl and MCV 103.5 fl and RBC was 3.42. I was told by the Emergency Dept. physician I had macrocytic anemia and I should follow up with my personal physician. I followed up with my physician and additional lab tests were done. As a result it was discovered that my B12 level was <159 pg/ml. I had a normal diet and nothing to believe this was diet related. I was started on daily cyanocobalamin IM self injections for 1 week then 2 times weekly for a month and now weekly. After 1 month of B12 injections I was rechecked and my B12 level was up to 716 pg/ml. An inrinsic factor blocking antibody test was then done which was very elevated 48.0 AU/ml. I then received the diagnosis of pernicious anemia. After starting the B12 injections all episodes of diplopia disappeared and my appatite and energy level normalized. My peripheral neuropathy has not improved and may have possibly gotten a little worse. Numerous tests have been done looking for other possible causes but all were normal. On 10/20/2020 I was sent for a complete spinal MRI with and without contrast and it was discovered I have sub-acute combined degeneration of the spinal cord in the cervical region. I was then sent to a neurologist. The neurologist was very unprepared for my visit and was not well versed on neurological complications of pernicious anemia. Following the physical assessment and her evaluation of my medical records her I was told that my peripheral neuopathy will probably not improve. She ordered additionl tests for vitamin e defficiency, zinc defficiency, copper defficiency, and Sjogrens. All were in normal range.
Currently all of my cbc values are in normal range including hemoglobin, rbc, and mcv. My energy is relatively normal and no additional weight loss. Up until my diagnosis of pernicious anemia I was very healthy and very active with no other significant medical history except a right hip replacement 6 years ago and a few episodes of diverticulitis. Other than the peripheral neuropathy which has limited my physical activity, I feel pretty well. My peripheral neuropathy is more numbness than pain but do have some burning sensation in my hands.
The radiologist who read my MRI's is a personal friend of mine and was of the opinion that my nerve damage could be permanent but felt that the b12 therapy would be my best chance of nerve regeneration.
I was hoping to get an opinion from the experts regarding anything I might do differently to try to improve the neuropathy. Thanks for any opinions.
Jimmy Janeiro
Hi Jimmy,
This definitely sounds like something that one of our functional medicine practitioners can help with. I recommend scheduling a telemedicine visit with one of them, and our patient services representatives can help you arrange this. Please give them a call at 773-296-6700.
We’re looking forward to helping you sort this all out.
Best,
Dr M
cliffmaurer
My B12 came back as 200 today. I’ve been having chills, achiness and fever for 6 weeks and dizziness and weakness for last two weeks. I’ve tested negative for flu, Covid 19, Covid antibodies and everything else is normal except Vitamin D a little low. My doctor said my symptoms are coming strictly from the low B12. What do you think? I am a vegan.
Debra Grimm
Hi Debra – fatigue is often a symptom of low B12, but fever, chills and achiness are not commonly associated with this. Since you tested negative for the infections you mentioned, it would be useful to call in and schedule a telemedicine visit with one of our functional medicine practitioners. Telemedicine can be submitted to your health insurance plan, and is a useful way to figure out why you’re experiencing these symptoms. Our scheduling department can be reached at 773-296-6700. We’re looking forward to helping you figure this out!
Best wishes,
Dr M
cliffmaurer
Hi
Doctor
I m getting pigmentation and uneven skin tone after using accutane
Is it related to b12 deficiency?
Bushra
Hi Bushra –
This symptom can be caused by a number of different problems; best to see a dermatologist – perhaps whomever prescribed the accutane – to help assess the condition.
-Dr M
cliffmaurer
After 10 years of Metformin for prediabetes, I gradually developed numbness and tingling in both feet, the right worse than the left. I started methylcobalamin injections 1 mg at the end of May and did a series of about 10 mg worth of injections through the middle of June. I’ve now done one more series of 10 1 mg injections between end of June and end of July. My symptoms have reduced by about 50 to 70%.
Question: what should I do now? Options are to take sublingual methylcobalamin, or continue the injections at a lower frequency. During this period of time I’ve also taken B1 Benfotiamine, Alpha Lipoic acid, and a full spectrum B vitamin. I have read elsewhere that the full impact of vitamin B12 injections can take 3 to 6 months to evaluate, and I’m now at about the two month mark. Advice would be much appreciated.
Andrew Gordon
You doctor can order tests to determine if you have difficulty absorbing B12 (either cyano or methyl) a condition called pernicious anemia. It’s not common so likely you’ll be able t take the oral form
Dr E
Hi Char
You didn’t mention what you were given but it sounds like Accutane now sold as isotretinoin. This can cause both mood changes and can effect B12 levels. You should get B12 shots to boost your level. Also ask your doc to test you for the MTHFR gene. If you are ‘positive’ for MTHFR you will need a special B12 called methylcobalamin
Dr E
Hi I’ve been unwell since March of this year after taking some acne tablets,well two tablets in fact. Suffered crazy anxiety with it couldn’t eat throwing up all the time an really low. Couple weeks after that I noticed I was so lightheaded feeling faint,heart was still racing,breathlessness,heavy head an the list goes on. Kinda got over the anxiety an stress but was so tired I couldn’t get out of bed an when I did I would feel faint. Pushed for bloods an found out yesterday that I’m low in b-12 it’s 2.3 an our level would be 4 an above. I can’t think straight can’t concentrate My head feels like it’s overwhelmed with negativity an that’s not like me. Could this all be down to being low an if so after taking these tablets will I be ok again?? I see something that things may be irreversible An I’m so scared. I’ve been given tablets an need to take one a day 400mg. Please help.
Char
Hi,
I was suffering dizziness and skipped heart beats (no tingling of extremities) and my B12 was at 210. This was in December last year so my doctor gave me some shots and after about a week my dizziness subsided and the skipped heart beats went away. Fast forward 6months and both symptoms have returned. I am heading back for blood tests but could the low B12 cause these types of symptoms?
Cheers
Steve
Steve
Hi Steve – It’s very possible that your symptoms are because your B12 levels dropped again. Injections are great, but many patients with significantly low levels like what you had require regular supplementation, either with injections or oral supplements. Check with your doctor to see what type of maintenence supplementation might be appropriate for you.
-Dr M
cliffmaurer
I have been seeing a functional doctor for two months now and had a b12 of 18 and have been getting shots 4 times a week. I felt better in the beginning but now feel worse then ever. Most days I hardly get out of bed I feel so bad. My doctor says it just takes time and that I also have several other problems that we are also working on..hormone levels, low vitamin d, low thyroid, bacteria and yeast overgrowth. Is it normal to feel worse before getting better?
Marcie
Hi Marcie –
Sometimes there’s a period during which patients experience symptoms as we work on things, but it’s important to let your functional doctor know what’s going on. If it’s possible to feel worse before you get better, she should be able to walk you through this so you understand why, and hopefully indicate that improvement is on the horizon. Also, you should certainly feel that you can ask for a second opinion from another health care provider if you feel you have unanswered questions.
Hope this helps, and I hope you turn the corner and start feeling better soon.
-Dr M
cliffmaurer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847746/
¨Although most patients respond well to cobalamin treatment, residual neurological abnormalities persist in most. Evidence of improvement or the reversal of neuropsychiatric symptoms varies according to symptom severity, duration and clinical diagnosis. It is commonly accepted that treating deficiencies in the early stages yields better results, as structural and irreversible changes in the brain may occur if left untreated.¨
I’m not sure it’s accurate to say that permament neurological problems are ¨rare¨.
Jennifer
Hello! I have been having some issues for about 6 months now. I have been very dizzy, sometimes near syncope, I get dizzy spells, I have blurred distant vision, intermittent numbness to the right side of my face and right hand/fingers as well as bilateral toes. I have a history of angular chelitis, I have small white spots on my skin, I have been fatigued, weak, forgetfulness, just feeling foggy and not like myself! When I get hungry I get very lightheaded. Do you think this could be a vitamin problem? Anemia does run in the family, as well as diabetes and chrons. Just wanted to see what you thought?! Thanks!
Lyndsay
Lyndsay. It would be best for you to seek medical attention from your primary care physician as these symptoms might be caused by numerous conditions. A good examination and some simple labs will likely determine the cause of your symptoms. Good luck.
Dr. R
Hello! I’ve been having symptoms of numbness on right side of face, right hand and fingertips, tingling in bilateral toes, dizziness(spells) near syncope sometimes, blurred distance vision, history of angular Chelitis, small white pigmented skin, fatigue, weakness, forgetful ness, lightheaded, feeling very foggy! I’m 25 and was wondering if you think this could be symptoms of a vitamin defiencey. Thank you!
Lyndsay
Hi Beth
If you have a high B12 and are not anemic, you’re probably in safe waters. He can order antibody to intrinsic factor to confirm the PA diagnosis and get a genetic test for a specific gene called MTHFR. If you are doubly positive (remember you get on gene from each parent, then your B12 should be methylcobalamin rather than the usual cyanocobalamin for best results
Dr E
Dr. E, I hope you will respond to this question even though the article is quite old. I’m a 68-year-old woman with two autoimmune diseases, one of which is in the cluster with pernicious anemia. I have many of the symptoms but we know that these could possibly be attributed to my other two conditions. I come from a family who’s previous two generations were riddled with pernicious anemia. I recently tested twice as high than the upper range level for serum B12, which to my understanding requires follow-up. But I can’t get my doctor to move on this. Is there an at home test that you can recommend, The MM a or an anti-body test for intrinsic factor? I just don’t feel well enough to Dr. hop and unfortunately I’m not in Chicago.
Beth Murphy (sister of Susan)
Hi Kay
Sorry but your questions are too complex for a simple email answer (s). I do advise you to see a good hematologist. These docs are very knowledgeable in working up B12 issues
Dr E
Hello Doctors,
Thank you for this article and your responsiveness to all of the comments so far.
In my case, I went to the dr with complaints of brain fog, tiredness, lightheaded when standing up fast, frequent colds/flus. Had initial blood done which showed normal RBC, ferritin 29, and B12 around 1100. I was very surprised at the high b12, since I have been vegan/vegetarian (mostly vegan) for 24 yrs. I always had supplemented b12 and was very careful with my diet, but recently adopted an unhealthy lifestyle of working 60+ hrs/week, very stressful job. Often would skip meals, eat unhealthy food, and stupidly neglected to supplement. These bad habits developed over a year. Also, the longer my symptoms went on and began progressing to tingling and cold sensations in my limbs and torso, I began suspecting b12 deficiency.
3-4 months before this initial dr visit, suspecting I was getting anemic, I began taking an iron supplement of 28mg iron bisglycinate. After I received the high b12 result, I looked at the bottle and realized the capsule also contained 60mg vit C, 400mcg Folic Acid, AND 8mcg cyanocobalamin.
I thought “phew, I have been supplementing with b12 all along, so my symptoms cant be b12 deficiency”.
My Dr agreed and chalked everything up to stress and anxiety.
However, as symptoms kept progressing, and I began researching b12 deficiency, I wondered if I had a methylation problem, so I switched to supplementing with 2500mcg of methylcobalamin. I then got my MMA and homocysteine blood tests. Homocysteine came back slightly lower than normal, MMA was in normal range. B12 tested again was at 700.
5 months have gone by now, and I’ve been taking 2500-5000mcg methylcobalamin by sublingual tablet each day, also magnesium and 2000IU vit D. Symptoms come and go, but lately have been worse, with constant tingling in feet, unusual nerve sensations almost everywhere, persistent itchiness and resurgence of bladder issues (pain, frequency).
In my opinion, the high B12 serum and normal RBC results are throwing my dr off. My diet was low in b12 and I had a lot of the symptoms, it seems like a no-brainer. I just want to make sure I am doing all I can to prevent further damage and I need someone to help me assess that who is not going to pass it all off as stress/anxiety.
MRI was normal, currently investigating autoimmune markers in blood.
My specific questions are these:
1. Does the MMA result prove definitively that I am using the b12 from the methylcobalamin sublingual tablets? Do I need shots or are the tablets pro-active enough?
2. Should folate, vit D or any other parameters be tested?
3. Could the high folate in the initial supplement I was taking have been masking the B12 deficiency that was causing neurological damage?
4. how could a 8mcg supplement of cyanocobalamin have cause my serum level to be so high?
Thank you so much for any help at all.
Kay
Hi Julia
You definitely need B12 injections. Get tested for MTHFR gene so your doctor can determine in methylcobalamin or cyanocobalamin is best. Also get tested for Intrinsic Factor Antibody to make sure you don’t have an autoimmune disease that interferes with B12 absorption.
You also need 5,000 IU of D daily
Dr E
B12 – 192
B6 – 5
vit D – 30
T4 – .7
TSH 1.1
Waiting on MTFHR results
Prior dx’s –
– celiac (more of an intolerance)
-malabsorption
Julie
Hi Jen
I really doubt if B12 is an issue in your case. I think further diagnostic testing to explain your symptoms is in order
Dr E
I have all the symptoms of low B12: dizziness, light-headedness upon standing from a sitting position, numbness and tingling in all extremities, fatigue, very pale skin, anxiety, shortness of breath, but my B12 is actually high and so is my folate. My TSH and subreadings are all very good (very normal). I considered that perhaps I’m not utilizing my B12 and folate, for some reason, but my Homocysteine is quite normal, actually even low at 6.2. My MMA is normal at 137. My ferritin is low at 12. Despite taking 65mg of iron a day and it hasn’t budged for months. What do you think? Is B12 part of this puzzle?
Jen
[…] 15 Whole Health Chicago, Six Commonly Missed Diagnoses: B12 Deficiency […]
Conheça os Incríveis Benefícios da Vitamina B12 para Sua Saúde » Saúde Diamante
Hi Sarah
You are right on both counts and if you could see the smoke coming out of my ears at this moment, you’d understand that I disagree with your doctor.
A B12 as low as yours will adversely affect your nervous system and because you’re chronically losing iron, taking some daily is a good idea. Find someone to give you B-12 injections until you get to about 800 and then switch to sublingual but keep monitoring it in case the levels drop. Crohn’s itself (with or without blood loss) causes mild anemia (called “anemia of chronic disease”) but taking iron does keep you on the safe aide.
Dr E
Hello- I have Crohns Disease and have had the last three feet of my small bowel removed.
My labs recently came back with Low B12(180), low iron and low iron saturation (4%).
I asked for B12 injections as that is what I’ve used in the past, doctor refuses and insists that sublingual tablets will be enough. Won’t that take much longer than injections?
Secondly, I asked for iron supplements as I can’t eat most foods with iron and I was told that since my hemoglobin is fine (12.6) I’m fine and done need iron. That just doesn’t seem right to me?
Thanks for your help!
Sarah
Hi Jane
Your doctor is on the right track. You may not be absorbing your B12 correctly and you will need B12 injections to get this into normal range
Dr E
Hello dr E I’m from the uk I’ve just found out I have very low B-12 and megiblastic anemia ,I’m losing weight without trying to and feeling nausea a lot , my doctor said this is because my body may not be absorbing the B-12 ,I’m very worried,should there be anything for me to worry about .thanks x
Jane Gratton
Hello Dr. E,
My vitamin D-25, hydroxy test shows 8.92 ng/ml (deficient <20) and Vit. B12 is 156 pg/ml. My doctor here in Southeast Asia prescribed me 1500 mcg methylcobalamin and Calsup 500 tablet, both OD and orally for 2 months. Should I talk to him about B12 injection or just go with his initial treatment for 2 months? Will really appreciate your advice.
Meena
Hi Meena. Your are significantly deficient in both vitamin D and B12. We might recommend higher doses of supplementation after learning more about your health history and overall current health.
Dr. R
Hi SL
Yes, it certainly could be B12 deficiency. However your symptoms also sound like hypothyroid (see other one of the “Commonly MIssed Diagnoses” on this subject). Both need to be tested
Dr E
This article has been very helpful to me! I’m going to make an appointment to go get my blood checked. I’ve had Crohn’s Disease for almost 6 years and about a year and a half ago I had a bowel resection. Ever since then I’ve experienced random dizziness, lightheadedness, and ringing in my ears that did not improve with antibiotics. I also constantly feel tired and weak. Lately I’ve been having frequent heart palpitations, shortness of breath, and my hands are always freezing. Could this be indicative of a B-12 deficiency? In addition, as a child I did have a form of anemia that required folic acid supplementation although it’s been a long time since I’ve been on it.
Thanks again for the article!
SL
I have lost roughly 20 pounds in the last year unintentionally and have seen a gastroenterologist as well as a endocrinologist; my labs all came back normal…the only thing they have prescribed is a 1000mg b-12 pill and a potassium pill… will this help gain the weight back?
Chelsea
Hi Chelsea – It’s unlikely that the B12 and potassium pill will help you gain the weight back. I recommend finding a good functional medicine doctor who can help assess the cause of the weight loss and help you create a plan to gain it back. If you’re around the Chicago area, ou doctors or nurse practitioner would be happy to help with this. If you’re not nearby, google the Institute for Functional Medicine to find like-minded clinicians.
Best,
Dr M
cliffmaurer
Hi.
Almost two years ago i started feeling very bad, mainly fatiuge and nausia, the blood test presented b12 level of 100.
To make a long story short i was mistreated and started reiciving injections only 6 monthes after the diagnose. With time i was feeling better and reached b12 levels of 340. I stopped with the injections but the sympthoms didnt stop completly although they were much more mild than before.
Is it possible that i am still deficient? Do i need more injections? I should add that through all this time i took a b12 pill under the tounge allmost on a daily basis. Is it possible that i have an absorbment problem?
Excuse my english…
Thanks.
Gadi
Hi Gadi – We tend to shoot for B12 levels above 500. It’s possible that you still need B12 supplementation of some kind; best to discuss with your health care provider.
Hope this helps!
Dr M
cliffmaurer
Hi Jamie Lee
These symptoms do not sound like low B12. You need to be checked for other possibilities. Low blood sugar and heart rhythm abnormalities are strong considerations but let your doctor know about your symptoms
Dr E
I’ve been diagnosed with b12 deficiency and was put on b12 shots and then pills.. I don’t take them like I’m suppose to and lately I’ve been feeling SO weird.. Worse then usual.. Shaky, dizzy, nauseous, headache(feels like sinus headache but isnt)and the past 4 days straight a weird feeling in my chest.. Not quite pain.. And it’s constant when I am standing or doing anything.. It’s a weird tightness kinda and irregular heartbeat.. Is that from the low b12? My Dr just says she doesn’t know SMH also, what do you consider to be low blood sugar? I was checked at work(nursing home) after almost passing out and it was 58?
Jamee Lee Jackson
Hi Dawn
Things should slowly improve. Make sure you got tested for the MTHFR gene. If you are MTHFR “positive” you would need methylcobalamin rather than the cyanocobalamin most doctors use. Both are forms of B12
Dr E
Hi,
I live in the UK. Apologies for the long comment.
I was diagnosed with fibromyalgia/cfs over 10 years ago.
For the past 7 yrs I noticed very bad muscle pain, no muscle stamina.
Started getting pins/needles in feet and hands over 2 years ago.
This past 6 months severe pins/needles in hands,feet, face and mouth and complete loss of sensation in my bladder.
MRI scans of brain/spine are clear.
I was sent to a haemotologist who after checking my history and looking at my genetic tests authorised 12 loading doses of b12.
I wanted to ask if many people experience their nerve pain getting worse after injections. I have been told this is the nerves being repaired by the b12. Is his correct?
I am getting nerve pain where I didn’t get it before but have also noticed that my leg/arm muscles are feeling a little better and there is a very slight improvement in m bladder sensation. I have had 7 injections so far.
Thank you
Dawn
Feertin 17 and b12 150. Red blood cells are in normal range. Not anemic according to results. Awful fatigue and stomach cramping. At a new doc surgery and not sure why not treating b12, looking at stress factors of course stress will be up as im feeling like crap!
Allie
Hi Allison
With the complexity of your symptoms, I suggest you locate a physician specialzing in Functional Medicine. Not only could you easily be checked for autoimmune disease and have your B12 checked but you could be tested for functional disorders like poor aborption (related to B12) and small inestine bacterial overgrowth (bloating, etc)
Dr E
I have had anxiety and depression all my adult life – I take antidepressants. I have had abdominal symptoms nausea bloating heartburn constipation. More recently pain in joints tingling in fingers and feet fatigue palpitations tachycardia brain fog can’t remember words. Family history of Diabetes Type 1 hyperthyroid Addison’s each condition affects my 3 sisters! Could I have an autoimmune disorder that’s causing b12 deficiency? Age 51 and truly fed up feeling ill!
Allison Whitehead
Hi I have been having some crazy symptoms for the last 5 months. Started off with pins and needles feeling in arms/wrist/finger and legs and feet, then muscle twitching all over my body, I have this vibrating feeling as well as weird electric shock feelings, and I feel off balanced as well as brain fog. Been through many test so far and they come back good. My doc is also trying to say anxiety/depression but I’m not buying it. My question is my b12 levels are 388 but my folic acid was flagged for being high at 29.9. I don’t take any supplements nor do I really eat a lot of foods high in folic acid. Is it possible my folic acid is masking a true b12 difiency? And is there further testing that can be done to find out? I don’t want to feel this way anymore. Sorry for long post. Thank you for reading!
Brandy
Hi Brandy – there’s evidence out there that B12 levels below 500 can cause neurological symptoms like yours. In practice, when trying to see if B12 has anything to do with a patient’s symptoms, I usually recommend a product called B12-Active
This can be taken daily, usually in the morning, for about a month to determine if it’s helping. You can also speak with your doctor about B12 shots which can help as well. But please keep working with your doctor and consider getting a second opinion. If you’re in the Chicago area, any of us would be happy to sit down and talk through this with you.
My best,
Dr M
cliffmaurer
Hi
I recently got diagnosed with b12 deficiency (84), I have taken 7 injections. My numbness and pain in the legs and arms has been decreased a lot. But I feel fatigue, my entire body gets weak and tired for sometime . I still feel dizzy and my stomach is upset most of the times. Have checked for celiac and pernicious anemia and both are negetive .Please help me out
Vinay
Hi Vinay –
It’s true that B12 could be implicated in these symptoms, but so could Small Intestine Bacterial Overgrowth Syndrome or “SIBO” as can thyroid and adrenal issues along with a host of other conditions. I suggest making certain that your current health care provider knows that these issues are still problematic, and if you run into roadblocks, try looking for a Functional Medicine provider either at WHC if you’re in the area, or google the Institute for Functional Medicine to find like-minded clinicians.
Best to you!
Dr M
cliffmaurer
Hi
I recently got diagnosed with a whole bunch of hand/wrist problems.I have 3 torn ligaments, incl the TFCC, due to an injury many years ago. To top that off I have carpal, ulnar and cubital tunnel syndrome. I do have low levels of B12. I need nerve rehab before surgery to see if the nerves also need to be released. Will a B12 suppliment help along with rehab? I previously had ulnar nerve release surgery and it was extremely painful, I want to help prevent that as far as possible.
Corne
Corne. It would be most worthwhile to bring your B12 into normal levels as soon as possible.
Dr. R
Hi Cathy
To start, I hope your oncologist told you that several of the drugs given for cancer have nerve damage as a side effect. This often resolves (but slowly).
If you hunt around, you can find a lab that can check your B12 level for around $30. Here’s a link of one company that does it
If your level is low, B12 injections taken weekly boost levels quickly. Many doctors now allow patients to administer these themselves
https://www.walkinlab.com/vitaminb12bloodtest.html
Dr E
Hi – I just found out I have severe sensory and motor nerve damage in both of my feet and I strongly suspect a B-12 deficiency. I became a vegan during cancer treatment (in remission) and ended up with several B-12 def symptoms like sores on my tongue, difficulty breathing, fatigue etc that I figured out myself and upped my B-12 just last month. Those things resolved quickly but now have to face neuropathy. Are you aware of any treatments for nerve damage from B-12 deficiencies that work? Very sad and scared about this diagnosis – esp since I pay an extra $2000 a year for concierge medical services and …was never tested for vitamin deficiencies. Lost and confused over what to do.
Cathy Rhodes
For years my vitamin b12 levels have been elevated based on blood tests. Every time I was told “oh that’s great – you aren’t low in B12.” I recently had a urine test for nutrition issues and my B12 levels are too low. . .the test was a methylmalonic test which I am told is a better test for checking this. I also have a gene mutation MFTHR which I am told makes it harder to absorb the B12. I would appreciate any comments regarding the urine test being more accurate? Tank you.
Carol
I was admitted to the hospital with b-12 level of 204. The doctor said to take 1,000 much daily. I still feel weak, arms and legs heavy. I am dizzy and I can’t eat. Is this enough b-12 to risenmy levels?
Sara
Hi Louise
Just get your B12 level measured and hopefully set your mind at rest. When you get the results, your personal result should be at least midway between “low” and “high” range
Dr E
Correction, the Neurobion supplement is not 200 mg but 200 MCG!
Louise
Sorry, am taking 200mcg daily not 200 mg.
Louise
I have been taking 40mg omeprazole daily since July 2016 (nearly 15 months now)for erosive oesophagitis. Neither of my doctors has said anything about long term use possible causing Vit B12 deficiency.
About two months ago started with tingling and intermittent numbness in my left arm, hand, leg and feet. I thought it might be related to ongoing pain in my left shoulder (which I have had on and off for 35 years)and tight muscles or muscle spasms. Then, at the beginning of August I experience what my doctor has put down as a very severe panic attack with no chest pain but a feeling of hollowness and major palpitations. Two subsequent ECG’s have shown no abnormalities and I still get this feeling of hollowness and palpitations quite often.
My balance feels “off” but I am showing no abnormalities in walking and I am able to stand on one leg (both left and right) for over 10 seconds at a time without falling over, even with eyes closed. I can’t detect any weakness in my grip and am able to carry heavy items, sew, knit and do everything as before. (Sometimes I feel my pincer grip isn’t as good as it was in the past though.) My extremities get very cold in cooler weather but once things warm up the cold and numbness goes.
I am far more irritable than normal (which is a problem because I am a generally irritable person anyway), and I am on etifoxine for anxiety – don’t think it’s helping because I am under huge stress and live with permanent anxiety due to my current life circumstances.
I am not fatigued to any large extent, although I have tended to have sleeping problems, eat a lot of eggs and meat (am on the Banting, low carb, high fat diet) and don’t think I have anaemia.
I started taking an oral supplement about two weeks ago but it is only 200mg cyanocobalamin daily (with some B6 and B1) and am sure that this is insufficient especially if the omeprazole is inhibiting absorption of the B12. I have not had a blood test for B12 levels and have not seen my doctor since the last ECG at the end of August when he still put down all my symptoms as anxiety / stress related. I have to say that my symptoms have worsened since I started taking the B12 supplement but sometimes I wonder if it could be psychological and the fact that I have had a few extra stressors added to my life in the past few weeks anyway.
Do you think that I should have my B12 levels checked anyway? Do you think I should up the number of supplement tablets I take daily or do you think that the omeprazole will still inhibit any reasonable absorption? I am considering weaning myself off the omeprazole to see what happens as well. I believe it should only be a short course, but I have a rather hiatus hernia which is what I think has caused my gastro problems anyway.
Just so confusing and distressing to keep getting fobbed off with the anxiety diagnosis when what I am feeling is so very real.
apologies for the long email. I wait eagerly for some advice.
Oh, I am a 64 year old female and I live in South Africa 80km away from the nearest hospital…
Louise
MTHFR people have difficulty getting enough B-12 in their cells. Low B12 is associated with a variety of neurological problems including trigeminal neuralgia. Your doctor can give you injections of methylcobalamin B12 which will give you good B12 levels. The usual B12 is cyanocobalamin which simply doesn;t work as well in this situation
Dr E
I am 50 and I have had trigeminal neuralgia since 2008, although I was not diagnosed until 2010. I had never had bloodwork done checking if I might be deficient in vitamin B until last mint when I found out I have the MHFKR gene mutation. The thin-cut MRI that I have had does not show a collapsed nerve anywhere. I do have a cousin that have TN as well. I’m curious if this “might” be a factor.
duffydan
Hi Ruben
It is very unlikely the low B12 is related to your ear issues especially as the symptoms occurred when your B12 had returned to normal
Hi Vicki
Low B12 is indeed associated with your symptoms. Determing why your B12 is low can be accomplished with some simple tests. If you are unable to absorb it through your GI system, you’ll simply need regular B12 injections
Dr E
Hi there… weeks ago my neurologist found folic and B12 issues ref to GP to prescribe. Managed to get the folic acid but have to wait for another blood test to show why B12 is low. In the mean time spent four days in hospital due to left side numbness and hallucinations. And the worst headache ever.. had MRI and CT scan brain structure normal thank god.. could all these issues be down to B12?. My blood test to find out why B12 is low is this coming Friday… numbness still remains even though I’m now home. Can anyone relate to this. I live in the UK
Vicky
Hi dr. I had last year b12 deficiency around 263 i has right foot numbness. I took 3 inyections of b12 and it realy help. On march my b12 784 on April 1111. One month ago on my right ear i have acouphene pulsatil 24hrs. I want to know if low b12 can provoke this ear problem. Now my b12 is 438. And my platelets are 148m . Thanks please advice
Rubén
The fact that serum levels have returned to normal after a few injections is irrelevant when treating a person that is B12 deficient with psychiatric and neurological symptoms. Injections must be continued until there is no further improvement. Sally Pacholok’s book ‘Could it Be B12?’ is the most thorough and up to date book on B12 deficiency. Anyone that thinks they may be struggling with a deficiency will benefit tremendously by reading this book.
atara schimmel
I have been suffering from numbness in both hands for the past two years.After i removed norplant.i have been to the hospital but the doctor said it can not be due to the norplant cause its affecting my both hands.please I need help on what to do
christy
Hi Christy – If you’re in the Chicgao area, I or any of our nurse practitioners could see you to help you figure this out. If you live elsewhere, I recommend this website to help you find a practitioner that can help: https://www.healthy.net/scr/PractitionerSearch.aspx?AssocId=36
Best to you,
Dr. Maurer
cliffmaurer
As a cancer patient/survivor (small cell lung cancer, medullary thyroid cancer) I keep a close watch on my blood work results. No one was concerned with my high B-12 level. I had stopped any B supplements for a week before the test and – before that had only been taking low levels of B-12 or B complex – not both. When I was referred to a colo-rectal surgeon for a spot that had lit up on my regular PET scan, he was the first to acknowledge a problem. Apparently h had read the same research I found on PubMed correlating high B-12 (excessive intake ruled out) with colon tumors and the higher the level, the greater the likelihood of malignancy. My B-12 was double the “high normal” and in the study’s range for high likelihood for malignancy. The fast growing nasty looking (surgeon gave me photos) golf ball size tumor turned out to be “pre-cancerous” but just barely – another couple of months it might have been a different story.
Colon cancer can be aggressive and fast growing and is so often caught in late stages when it becomes difficult and unpleasant to treat. If elevated B-12 levels can help with detection as the study suggests, it’s a pretty simple and relatively inexpensive test. (Just make sure you skip any B vitamins for several days to allow for a wash out before having blood checked.) While neither a diagnosis nor a confirmation of a possible problem, an excessive level should provide enough suspicion to merit further imaging tests and/or a colonoscopy.
Patti Woodbury Kuvik
In theory, yes.B-12 is involved in a healthy immune system and low B12 could prevent your immunity from functioning efficiently, predisposing you to viral infections like warts.
BTW, my favorite wart treatment is the stomach med Tagamet (sold over the counter), one tab twice a day.
Dr E
I have had warts on my hands for a few years could this be B12 deficiency ,I have a low blood count.
Pete
Hi, I have been on B12 shots and taking sprays, creams and lozenge for two to three years. Ever time I miss a day, I shake or start to cry over anything and occasionally wake up with numb or tingling hands. I have Hashimoto’s, Celiac, and Anemia which I am in treatment for. My question is: is my B12 deficiency chronic? Could it be Pernicious Anemia? And next: what can I do to reverse this issue? Could a B12 deficiency have anything to do with a chronic Magnesium deficiency?
Jayne
Hi Jayne. It is probably best to speak to your PCP regarding the low B12 and associated health conditions. He/she knows your history and can properly assess your current laboratory tests.
Dr. R
Hi i have blurry vision headaches very drained feel very low joint pain and very bad memory .I have been told by friends to have a b12 test so i go on Monday I’ve never heard of it before .
Michelle
Hi i was diagnosed of going through the menapause 2years ago.i have been feeling drained not tiered but physical drained moody and depressed headaches joint pain out of breath memory loss blurry vision .I have said that there is something i cant put my finger on a couple of my friends mentioned b12 . I haven’t heard of it at all but after looking it up i think it explains a lot of my symptoms.i am at the drs on Monday and i am going to ask for the test
Michelle
Having a high B12 level in itself is not dangerous but certain medical conditions can cause elevated B12 levels. If your son is NOT taking any supplements containing B12 then the cause of his high levels should be investigated. Virtually all the high B12 levels I see in my practice are caused by patients taking a lot of it. Fortunately this is harmless
Dr E
I know that this article is about lack of b12 but i need help in finding information about high b12 levels. my son is 8 and had bloodwork done on march 8th that read that his b12, ferritin serum and platelet levels are all too high. he did catch a bad cold around the 25th of feb. bad enough for me to have to take him to the hospital for a fever that was 103. im not sure if the b12 elevated to fight off the cold and was still in his system on the 8th and just happened to show in his results or should i be scared because everything i read says that high b12 means serious problems. can you help me please?
jessica
Thank you for the insightful article. Very interesting about the GI manifestations. However, contrary to the opinion of Dr. Alan Gaby, it is possible to overdose on B12 for those who have polycythemia. Often, a diagnosis of polycythemia is not uncovered until a person starts to replenish depleted B12 stores. This can become a crisis of thrombosis very quickly, particularly if IVs are given. Possibly high dose niacin might reverse this, not exactly sure though. Other than that, immediate and perhaps ongoing, phlebotomy must be performed.
Alison
Want to know more. I have been diagnosed with a brain cloud but all subsequent tests have “normal” results. What can this be? I am female 67 years old.
Adeline Mikka
This can be due to a variety of causes. Do you have access to a functional or integrative medicine physician? If you’re in the Chicago area, we’re happy to help.
-Dr M
cliffmaurer
Wow! Very helpful information. Excellent explanation that is easily understood.
Debbie Johnson
thanks for that. i’m getting gradually more cold/numb in hands/feet and fatigued, etc etc. and full of joint pain/injuries, so luckily came to realize i have morton’s foot which comes from a p5p deficiency, so to prove if quackery or legit, i chose to test b2 b6 b9 b12 and homocysteine and found off charts high homocysteine, off charts low b2 which were expected and apparently indicate inability to convert b6 to p5p thus no p5p to convert homocysteine etc. and likely others deficiencies inherent. anyway, i’m looking for a similar article for b2 deficiency and vitamin d. thanx.
wolf max
Excellent information. Just posted this on an ALS forum.
Linda Paulhus
Surgery doctors need to understand more these days – I did work in a surgery so I am familiar with the routine but when I changed surgeries to become a driving instructor I was disappointed with a couple of them!!
Jean Elizabeth Gittins
Glad I followed my own diagnosis cause surgery doctor hadn’t any idea even when I showed him the B12 Oral Spray -I already knew I could not tolerate injections & so I made the move early enough to deal with the problem by purchasing the spray – I do still have the effects of numbness but not as severe – I just use more spray in order to solve the problem – the other symptom that developed is feeling cold which bugs me & would like to understand why & if it is related to B12!
Jean Elizabeth Gittins
how much b12 can you take at one time
Gaye
If I take too much, my eye twitches
Yeresa
I have had many issues with nerve issues primarily in my arms and neck although I did injuremy C5-C6 12 years ago. Six years after the injury I woke up with no right arm and hand function at all. It was numb. Treatment was neck traction daily for about 3 months and then it was gradually reduced as I regained function. My physiotherapist was head of the Dept and told me they really didn’t know if it was the traction or just my body healing itself.
I woke up one morning in May with wrist drop. Again went through the MRI and EMG’s with the conclusion radial nerve damage above my elbow. I had 3 EMG’s done.About every two months until Oct. The last one finally showing repair. The neurosurgeon only seen me once in July.After that it was a phonecall.My arm and hand is about 95% back to normal.
The question is normal isn’t really normal. My last EMG I explained to the Dr I’ve have tingling in my fingers primarily my ring and pinky finger and I guess my ulnar nerve isn’t “perfect”. I don’t recall the terminology used but again a section of a nerve.I explained my muscles twitch all the time in my “bad” arm and my calves. It’s like a ping-pong ball jumping around in there. She suggested I should ask my GP to refer me to a neurologist.
Doctors are scarce so I keep the one I have but it’s known by many he isn’t very good. I asked his a week ago to test my B12 and I got a callthat my husband took for me yesterday telling me to take B12 1000 mg daily and come back in a monthas my B12 was low.I called his office back and and asked well how low was it and got its low with emphasis on the word low.
I’ve noticed moodiness lack of energy eating issues and I am on Rabeprazole for Gerd I guess for a few years now. I’ve gone for a sleep study for insomnia as I’m up every two hrs and was put on Zoplicone. That was 4yrs ago. It gets me to sleep but I don’t stay asleep.Im wondering now what I should do now as I’m not sure if the medication is causing or contributing to my low B12 and issues with the hands tingling and my toes also don’t have 100% feeling either. The drs think it may be my thin frame causing the nerve issues.Lately every joint in my body is painful.Ive also been told 6weeks ago my shoulder issues are tendonitis.
After my initial injury 2 yrs ago I had a test that confirmed I don’t have normal feeling/sensitivity in both my hands.
Could my nerve issues be caused by the B12 deficiency?
Linda
Hi Linda – Your symptoms could be in part due to B12 deficiency, but it’s important to explore other causes with your doctor. If you’re in the Chicago area, any of us can help you assess this at WholeHealth Chicago. If not, make certain your doctor knows about all of these components to your health.
Best to you,
Dr M
cliffmaurer
Hi Suresh
I did answer your query on the 24th. From your additional information, my only additional suggestion is that you get a second opinion from a neurologist. If, with injections and oral meds, you get your B-12 into a high normal range and there’s virtually no improvement, you need to be open to alternative diagnostic possibilities
Dr E
I posted my questions on december 24th and 26th… Dr.E or Dr.M or anyone could you please give me the answer.. Im so frustrated about my condition..Im in depression.. I dont know what wil happen in my future.. Please suggest me some ways to my life..
Suresh
MY sister has been diagnosed with pernicious anemia I have been treated for psychosis severe depressive episodes when I could not get out of bed for a couple years during my youth I have always wondered why I was so sick when starting at 17 for 2 years I was severely ill that for 2 whole years I was bedridden I am now 58 at 51 I got a pacemaker for a second degree heart the electrical system of the heart failed to work all of the symptoms tingling of the hands I had starting in elementary school I have had a very sore mouth at times for a long period of time that was severely painful felt like someone sliced the inside of my mouth and tongue with a razor blade last month I asked the Dr. could I have a B 12 shot well I have been walking and jogging a little ways never ver was into jogging ever but I will be going back once a month for the B 12 shot and have a super B complex vitamin that is USP verified which mean that the US pharmacopeia inspects the production and standard for the vitamin is the same inspections and production potency is done by the same as for drugs produced in the US The Dr. says that he was taught in medical school that the B 12 injection is the only method of resolving the deficiency he asked me to check with the local vitamin supplier what is the best supplement they have so I have just done my research and ordered USP verified which verifies the actual benefit of the vitamin while researching pernicious anemia for my sister wow I was looking at leukopenia because she hs recently been told that she has it and sure enough it is commonly misdiagnosed and this is not what she has obviously she has never gotten treatment for pernicious anemia now she is having face tremors her head and face have a no no movement back and forth movement of her face and head I see the tremors listed for the diagnosis I am very excited because for many years I have been treated for Bipolar illness and I recognize all the symptoms though severe symptoms for the diagnosis I will be Facebook page mentioned and I will continue to come back to this site for more information please anyone being treated for mental illness please let me know if this hs happened to you
Frederick Howanitz
I have recently been advised I have low B12 levels by my G.P and started injections. I started with swelling in my Right hand and joint pain. Sometimes my hand goes cold and blue. Pain and swelling has started in my left hand along with pain in both knees, feet and ankles. It feels like my skin is too small for my joints. Pain is worse first thing in the morning. Can all of these issues be from B12 deficiency ? I feel like i’m getting worse each day.
Kelly Jeanes
Hi Kelly – It sounds like this deserves some additional investigation to make certain that something else isn’t going on. It’s possible that these symptoms are linked to B12 deficiency but other causes should be ruled out by your doctor.
Best,
Dr M
cliffmaurer
Is there any doctor who help me to resolve my health problem and get well kindly make contact me I will send my vitamins and xray’s report . My WhatsApp nmbr 009203035883425
Muhammad
HI Muhammad – unfortunately we do not offer this kind of service over the telephone. Where are you located? Perhaps we can help you find someone near you.
-Dr M
cliffmaurer
My level is 480. I have lots of symptoms of tingling, depression, brain fog, gut issues. I know the normal range is 200-900 but would raising that level be beneficial?
Brad
It’s possible that raising your level would help, but treatment should be based on a thorough evaluation to find out if there are other causes to these symptoms such as thyroid or other hormonal imbalances. If you’re in the Chicago area, any of the doctors at WHC could help.
Best wishes!
Dr M
cliffmaurer
Thanks for your suggestion DR E..
My age is 25.. I had this shaking problem from the last 3 years.. For first 2 years it was little bit.. At first i thought that its a tremor.. But from last year it was increased.. Soo i went to doctor again.. He told me to take the test for b12 And i got 99 in the results level.. I took this test 2 weeks back in this month.. He gave me 5 injections for five consecutive days,, medicines tetrafol plus for 4 months.. And he also gave me betacap 40 mg for tremors.. While im using betacap.. Im feeling dizzy and im becoming sooo tired of this betacap( proponal).. I dont think its because of tremor. i think its because of b12 deficiency… What would u suggest for me is mediciens are good or injections.. Please help me on this.. Im soo afraid about my future.. I dont know the shaking problem is because of essential tremor or b12 deficiency..?. Please clearly explain how to cure this shaking problems.. How many months it wil take to cure this shaking problem.
Suresh
Hi Suresh
The extent of nerve recovery depends on how long you have had symptoms AND maintaining B-12 at high levels. I would suggest getting tested for the MTHFR gene because if you are “positive” you may do better with methylated B-12 injections that the usually administered cyanocobalamin. Whichever you use, get the injections weekly until you are at about 2,000 and then every 2 weeks to maintain there
Dr E
I have low b12 levels of 99 and I have tingling and numbness in my arms and hands . Iam soo worried about this shaking hands.. .. I took b12 injections for five days five injections 1000 mcg.. My Doctor gave tetrafol plus medicine for 4 months to improve b12 vitamin..and also i took Tremarogram test it shows 9-11hz essential frequency.. And im a software engineer.. My work is always on computer.. Somtimes,, using keyboard and mouse is little bit difficult for me.. im soo worried about my future because of this..Im going to depression because of this.. How long do I have to be without sleep and suffer from tingling and afraid in my arms and hands ?. If my b12 levels back normal after this medication,, then this tremors go away or not..? I will appreciate any advice and whats my real problem and how to cure this.. Thank you
Suresh
Hi everyone. My symptoms started the day after the birth of my 3rd baby. Flashy lights in my eyes. Paresthesia in my left hand. Left side of face mouth teeth tongue. I get tingling in hands feet arms. bright light hurts my eyes.brain fog. Bad memory. Kidneys are also under strain. Due to see a neurologist in Feb.
Jo
Tracy,
There are genetic markers for B12 issues and it may be that you have one or more genetic SNPs (snips – or anomalies) that disrupt the pathways for B12 conversion and related metabolic functions.
B12 is incredibly complex and there are a range of genes that can cause B12 absorption and conversion issues in the body. B12 goes through about seven conversions in the body BEFORE it can be used metabolically to drive crucial metabolic processes (primarily the Krebs Cycle (aka the Citric Acid cycle) and the methylation cycle). A genetic SNP can disrupt absorption of one or both active forms of B12. One active form is methylcobalamin; the other is adenosylcobalamin.
You may want to look into metabolic testing for MTHFR (folate metabolism) and relevant B12 metabolism issues to understand better what’s going on and then get genetic counselling if anything shows up (highly likely if you’re having B12 issues). 23andme may do these tests in the US, or, if not, then you should check to see what companies offer them.
Based on your family history, there could easily be a problem with your absorption of adenosylcobalamin, which would cause disruptions to the central nervous system that happens over years or decades. A lot of neurodegenerative diseases have at least some B12 issues involved — some are almost entirely B12 related.
Ailsa
I was contemplating going vegan (after being pescatarian for two years) so asked to have my B12 levels checked at my last physical, as a baseline. I was shocked to find out it was 225. My 83 yr old mom has started b12 shots due to dementia symptoms. Her level was 280. I also found out her mother and sister were found to have low b12 in midlife. Her mom had Parkinson’S. I also have low D, 28. My Dr seems pretty unconcerned. I know I could supplement, but I’d like to know WHY my levels are low.
Tracy
Being vegan is not the healthy option that people think it is. Besides being deficient in B12, you are also not getting DHA, vitamin K2, and others that can have devastating effects on your health. My husband had been vegan for years, and now he has Parkinson’s, osteoporosis, and severe insomnia. He still refuses meat in the belief it will hurt him. It almost seems like what he has is an eating disorder, since he continues on this diet even though his health has nosedived. He ingests a ton of supplements, though.
Teresa
Greg,
I also have a MTHR defect, so I have to avoid synthetic b vitamins. Vegan or not, I have to stay away from synthetic foods, like enriched bread.
Teresa
My b12 issues started slowly after going vegan with my husband. Started with gut and stomach issues, then fatigue, then balance problems, then face paralysis and numbness/tingling in face. Taking b12 has reversed all that after three years. I tried to stop using the b12 for two months and all the symptoms returned. I take 5,000 mcgs of methylcobalamin daily (steer away from cyanocabalamin), 15mg of methylfolate (steer away from folic acid), and a fully active b complex.
Teresa
I imagine going vegan meant that you would have to take supplements to make up for the lack of nutrients you would normally get from meat, etc. Removing meat etc would very likely lead to deficiencies.
greg
I was a vegan for over a year and I regret it now it’s an incomplete diet and lacks key nutrients . I have been eating meat as recently as 3 months but I think I’m deficient in b 12 because I’ve been weight lifting daily and suddenly I was getting tingling sensations on my feet and hands and I feel exhausted and very weak with gastro intestinal issues with stomach aches so does anyone who has had low b12 think that this is my issue . I also feel a bit blue and I was born with thalasaemia minor which is a low haem count so I’m thinking I’m down in b12
Vasilios
Has anybody suffered nausea with low b12,I’ve started injections today first of 5 and I’m hoping soon enough I start to feel more me again!
Angie
Teresa…good point re: taking B12 and testing…would imagine it would throw off tests…would love a dr’s point of view
Greg
I’m not a doctor but I’ve read a ton about B12 supplementing. Taking oral supplements jacks up the amount of B12 in your blood stream pretty quickly, and it will show up in your blood serum levels. My level went from 280 to 1100 in just a few weeks on oral supplements. That doesn’t necessarily mean the B12 has fixed your deficiency by that point, either. If you want a true idea of whether you have a deficiency, unfortunately you are supposed to be off oral supplements for several months before the test.
Lindsey
I just found a Dr’s post that said you should wait 2 to 3 weeks after stopping the active b12 before you get tested.
Teresa
I’m so glad I found this page. I’ve been having some strange symptoms the past 2 years now. It started with being sick and having diarrhea every day then the anxiety set in. I’m feeling some weird type of dizziness, my legs and back hurt all the tine and feel kinda shaky when I walk. I’m exausted all the time but can’t seem to sleep. I’m waking up at least 3-5 times at night after I do finally fall asleep. My short term memory is horrible, I feel weak and bruise easily. My doc took a blood sample 6 months ago and said everything was fine and it’s just anxiety but I really don’t think so.
Lannie
Teresa – if you were tested when taking B12 supplements, the test would have not been accurate but reflecting your supplementation. You were – and still are – most likely B12 deficient. Maybe get yourself checked for H. Pylori as well, it’s very common and can be a root cause for the B12 deficiency. And may explain the stomach issues.
Any
I was tested for H Pylori and it was negative. I don’t have diabetes. I did have an endoscopy which showed chronic gastritis. It was thought that I might have celiac, but that test was negative. I was put on PPIs for awhile, but now I take betaineHCL with pepsin at every meal. Could be hypothyroidism from radioactive iodine treatment for Graves disease. My replacement dose keeps getting lowered because my TSH keeps going lower. Is this all related? No one ever tested mr for pernicious anemia. Probably because my serum b12 was always high, even though I had high MCV tests starting 10 years ago.. Now I know that was MTHFR talking. I have an appointment in December. I’ll let you know what happens. Meanwhile, I’m taking 10mg of sublingual methycobalamin a day. I’m feeling much better. Low b12 is seriously bad, and as in my case, it is most definitely a missed diagnosis. Thank you for this forum.
Teresa
How long should you stop taking b12 before a test? Does taking b12 throw off a pernicious anemia test?
Teresa
Have you been tested for diabetes. Diabetes 3 is my culprit. And with it. B12 is a real no no. And i only weigh 99 lbs. I just keep losing. Also have had ibs for 25 years. Be checked 4 diabetes.
Krazy korny
So glad I stumbled on this site. Have been dealing with pins and needles for weeks. Fatigue for years. Sleep apnea with CPAP machine but still exhausted everyday. Mental fog for a long long time but worse lately. I have gastro issues and take proton pump inhibitor. Worried now that it’s affecting my body’s ability to breakdown food properly. In addition to symptoms above, I have autoimmune (psoriatic arthritis) issues, nail pitting, splitting, etc. Was put on low grade anxiety meds years ago as well (after stomach issues) and now wondering if this all relates to B12. Will be pushing doctor this week for extra testing.
Greg
I just had an interesting experience. I had been taking 5,000mcg of sublingual methylcobalamin, plus 15mg of methylfolate for over a year to treat MTHFR and nerve/stomach/balance issues. I went to an endocrinologist in early September, she measured my b12 level and it was over 2000. She panicked and told me to stop taking the methylcobalamin. After about 7 weeks, I started to have a lot of digestive issues that I chaulked up to something bad I ate. I began a diet I’ve used in the past to get my gut under control, but it wasn’t working. This week, my mouth became painful and I started not being able to sleep. I began becoming very tired. I started wracking my brain, trying to figure out what was causing my health crash. Then I started to get a nerve sensation in my cheek, and then it dawned on me. It might be the b12. I started taking it again, and my symptoms are resolving. I looked up the symptoms for B12 deficiency and my symptoms match. During my research, I also found out I might have pernicious anemia, on account of the fact I have another autoimmune disease: Graves. My question is: can low b12 symptoms come on that fast after just 8 weeks off a year of taking high dose sublingual methylcobalamin? Would it be reasonable to ask to be tested for pernicious anemia?
Teresa
Teresa. I’d recommend you consult with your PCP regarding your symptoms, research and suspicions (pernicious anemia). Getting your B12 tested again is certainly worthwhile and would give you more information to go on.
Dr. R
Your total Vitamin B-12 level may have been within the norm however, it is important to test your active B -12 not your overall vitamin B-12. I would request methylmalonic acid (MMA) and holotranscobalamin (holoTC) blood test be done. These will give you a more accurate result & represent your true levels. The norm numbers are ridiculous, by the most go below the norm everyone has chalked you up as a mental case!
My all time low B12 was 216. I could no longer work, worst right side face, neck, and shoulder pain, major balance issues, often had falls, I struggled to get out of bed, (but when I was there, I couldn’t sleep) my tongue felt like it was vibrating all the time, No short term memory and so on……. Once found, my neurologist started me on 1000 mg injections daily for a week and now weekly along with 1000 sublingual daily. Within 3 weeks my levels are over 1000! I feel so much better, physically and emotionally! I am just happy my friends and family stuck by my side when all test showed nothing and my primary doctor told me it was in my head! Only damage found thus far is crevicle issues; bulging disk and herniated disk. Now onto physical therapy- Rd to recovery! Don’t give up, my battle was over 2 years long and someone finally showed me the respect I deserved and listened to me. My hero is Dr. Sorab at U of M!
Sherry
Hi Dr
I’ve had low b12 months ago it was 230 ( active b12 was 32 ) I was getting numbness which has subsided after monthly injections.
The last 4 months I have had chronic pain in my mid thoracic back around the ribcage. My ribs make loud snapping sounds when I raise my shoulders and I am in pain every day. Had X-ray but nothing showed. Is this a damage caused by b12 defiency? Or what would be your opinion?
Daniella x
Daniella-Rose
I’m only 20
and I have severe vitamin b-12 deficiency
It was missed for years out of my blood tests and when jchanged GP it was noticed immediately
I started getting injections there and then but a few months after my exhaustion had gotten worse and I had numb feet a sore tongue wasn’t extremely pale and constant pins and needles
A full year after I got properly diagnosed with perperhial nerve damage I can barely walk
My balance is so bad I’ve to get help to the toilet
I’ve had so many falls and now getting a wheelchair
I’ve bad degeneration of the spinal cord and don’t know if I’ll ever heal
They are still investigating the cause but seen to think it’s a mixture of diet and stomach absorption problems as it runs in the family aswell
Just said I’d share my story
Ava
Are you also being treated for folate deficiency? Ask your doctor to test you. You might want to add methylfolate to what you are doing.
Teresa
Just stumbled across this, I have vitb12 deficiency and I am meant to get injections every 12 weeks but my symptoms of pains in my hands feet come back at around 8weeks, had to practically beg my gp to give me injection early she compromised at 10weeks. Is it common to need injections sooner? Is it harmful to get them sooner? It helped so much when I got it at 10 weeks, but I’m at 8 weeks again just now and it’s agony!
Gillian
Get yourself some sublingual methyl b12 tabs and take them to prevent the symptoms. They work as good as the shots, and are much more affordable.
Teresa
For everyone on this thread, I recommend checking out the Pernicious Anemia/B12 Deficiency group on Facebook. It has loads of information and thousands of people talking about their symptoms and treatment. You do not have to have pernicious anemia in order to join the group. They talk about B12 deficiency caused by other things, as well.
Lindsey
This post is very correct. Doctor misdiagnosed my B12 deficiency as depression & he prescribed me antidepressants & anxiolytic. Another neurologist prescribed me vit. 12 & i was completely fine without antidepressants.
Saanjh
Hi Jen,
I had similar symptoms and it took well over a year for the symptoms to go away. I have a MTHFR genetic mutation, so I was taking methylcobalamin 5000 mcg daily, along with methyl folate. Both should be taken together.
Teresa
Hello, I’ve been following this thread for a while as a lot of my symptoms match with a B12 deficiency. Since May I have had tingling, pins and needles, some numbness and increased floaters in my vision as well as generally tired eyes but I can see ok. My B12 was at 204 but my doctor doesn’t think that is low, really, just a little less than ideal and I m waiting for an MRI to check what’s happening so I am hoping that will be ok. I have been taking 1000mcg a day of B12 for a month now, and wondered how long it normally takes to see a difference in Neurological symptoms…? Also, I have actually stopped taking it for a few days as the symptoms appeared to worsen – I had quite a lot of facial tingling, particularly in my hair line and more burning in my foot than normal. Could these be side-effects of taking a B12 supplement? I have stopped taking them to see if it improves and it does seem to have done. Thank you for your advice and thank you for this blog, it’s very useful indeed.
Kind regards
Jen
I cannot tolerate injections- if there is an alternative – which in the event of B12 deficiency I choose B12 Oral Spray – contains Methylcobalamin which is highly recommended. Doctors are not aware of these – you need to purchase the sprays – don’t expect to get them on script!
Jean Elizabeth Gittins
I stumbled across this thread while searching my symptoms. I have had many low B12 symptoms over the last few months (although I didn’t know that’s what they were) but they have gotten bad in the last couple weeks. I am exhausted – being out of bed for more than an hour or two at a time wears me out. My head feels heavy and just weird (I described it to my doctor as being dizzy but it’s not really dizziness – more off balance), my eyes are spaced out and tired (but I can see fine), I am having brain fog, and my hands and feet go to sleep easily. I had an MRI that I am still waiting on the results of and the bloodwork my doctor did came back normal except he said my B12 level of 382 is low and told me to supplement with 1000 mcg daily. I should also mention that I have a 3 month old baby that I am exclusively breastfeeding. I bought 2500 mcg sublingual methylcobalamin that I have been using twice a day for the last few days. My doctor wants me to follow up with a neurologist as he says a b12 level of 382 wouldn’t be causing the symptoms I’m having. In your experience, can a level like mine be causing these symptoms? After doing some research, it appears that many doctors think the minimum normal levels in the United States for b12 are set too low. I am a busy mom of 3 and don’t have time to be down so much of the time! I am going to call my doctor in the morning and beg for a b12 shot. Would a shot help me immediately? Any insight you can offer will be much appreciated.
Kristin D
Hi Kristin –
Your B12 levels can, in my opinion, cause symptoms like yours, but of course you and your doctor should rule out other causes (the MRI your had and your blood work should be a good starting point for this). B12 levels can take weeks, even months to increase. Injections of B12 can help, but rarely are results immediate. If you’re in the Chicago area, we’d be happy to help if you feel that you’re not getting results.
Best of luck to you!
Dr M
cliffmaurer
How much b12 can you take a day before you overdose. lve been taking 3000mcg a day.
Gaye Jones
Gaye. It’s probably best to be tested to determine your B12 levels.
Dr. R
Hi Sue
The low B-12 you had may take months to repair. It can be a slow and frustrating process and unfortunately rarely the damage cannot be reversed. However, for most people, full function is restored
Dr E
My vitamin b12 level is 1900 and before that was 154. The question is why I still have tingling in my legs and feets? Even though the vitamin b12 being corrected
Sue
I have been suffering with mouth dryness, mouth ulcers, Hand and leg weakness, eyesight weakness, tingling in head and face, Gone through MRI of Brain and Spine only themal sac indentation from c-4-c7 and in Lumber spine l-4to l-5 was diagoned , After going through 5 Vitamin b-12 injections my level was 439 after which i have gone through 5 more injections in feb this year but now the tingling and ear burning has returned again this year in august. I am very nervous my reports are normal but things are not improving much since last year. Please help me .
Shekar
Hi Shekar – it’s not uncommon for symptoms to return as your B12 levels can rise and fall. Best to consult with the doctor who is ordering the B12 injections. If you’re in the Chicago area, we’d be happy to provide a second opinion. Myself, Dr. Rubin, Dr. Edelberg or our Nurse Practitioner Maureen Milota could all help with this. Please let us know if we can be of assistance. Our office can be reached at 773-296-6700.
Best wishes,
Dr Maurer
cliffmaurer
Hi
I had b12 deficiency in past but was able to regain the levels after regular intake of b12 supplements before I left taking it. Since last couple of weeks there is an extreme pinching sensation in an area of palm size on upper back. Also, I feel dizzy at times. Are there signs of getting deficient again? Pls help.
Vipul
Hi Vipul,
These could be related to B12 levels, but the upper back pinching could also simply be an irritated spinal joint or pinched nerve, and one of the most common causes of dizziness is a harmless but annoying disturbance of the inner ear. Best to have these things looked at in person by your doctor, or if you’re in the Chicago area, I take care of patients dealing with similar issues to these all the time. Our Patient Services can be reached at 773-296-6700.
Best of luck,
Dr Maurer
cliffmaurer
Having muscle problems soreness for 9 months can it be my b12?
Carol
Hi Caron – Muscle soreness can be related to B12, but may also point to a magnesium deficiency, lack of hydration, lack of exercise, vitamin D deficiency, and a lot of other causes. Best to have it looked into by your doctor. Best of luck in sorting things out.
-Dr M
cliffmaurer
Thanks for helping! ???
Birgitte Goetzsche
I have been taking methylcobalamin 1000 mcg (lozenges) a day for 2-3 weeks now. In the beginning I took it 3-4-5 times a day, but got symptoms of hypokalemia (a bit scary!) Take potassium supplements now and only 1000 mcg b12 a day. Is it normal to have some of the deficiency symptoms (eg balance problems, incontinence, burning feet, brain fog, joint pains) intensified for a couple of days and then replaced with another? Scares me a little….. I am on Levothyroxine, but haven’t reach the full dose yet….
Birgitte Goetzsche
Hi Birgitte – While it may take some time for symptoms to get better, it might be a good idea to look into other causes of the symptoms you’ve listed. Does your physician know about everything that’s going on? She or he should be able to give you some idea of how your symptoms should get better, how long it might take, and they’ll be able to look into other possible causes if necessary. If you’re in the Chicago area, I or any of the other physicians at WholeHealth Chicago would be happy to see you for a second look. Patient services can be reached at 773-296-6700. Otherwise you could try this link to find an integrative physician: https://acam.site-ym.com/search/custom.asp?id=1758.
Our best to you,
-Dr. Maurer
cliffmaurer
It’s funny you say this. Just this week, my doctor flipped out on me because my b12 blood levels were over 2,000mcg. I have taken sublingual methyl b12 5,000mcg for about two years now. It cleared all my scary neurological symptoms. Should I cut back to 1,000mcgs now, like she angrily suggested?
Teresa
Hi Jennifer
A B-12 of 150 is certainly low.It will probably take several weeks to clear the neurologic symptoms. You can speed things along by adding B-12 chewable tablets (available in our apothecary and most larger healthfood stores). B-12 is extremely safe so you don’t have to worry about taking too much
Dr E
OMG…..reading the above article ….everything it said sounds exactly like me…I had my first b12 injection today …I suffer from stomach problems weight loss.. panic attacks..tingling …fatigue..yellow/pale face….for the past 5yrs …only just got diagnosed with low b12….
vicki
I have low b12 levels of 150 and I have tingling and numbness in my arms and hands . The tingling and numbness is unbearable at night especially. I cannot sleep because I can’t get comfortable with all the tingling and numbness in my hands so no rest for me ! I have started taking b12 injections . I take one 1000 ml shot once per week for four weeks and then once a month and have b12 levels rechecked after three months. How long do I have to be without sleep and suffer from tingling and numbness in my arms and hands ?? I will appreciate any advice .. Thank you
Jennifer
Hi Sue
My bet is that when your B-12 gets into a healthy range, the tingling will stop and you’ll be able to stop the Lyrica.
Remember that Lyrica isn’t “curing” anything. It is simply used to relieve symptoms.
Dr E
Hi doc,
I have low b 12 that is 154 and taking lyrics to calm my tingling in my leg, feels,arms and hands and also has b12 shots for 2 months and will continue for another once in 6 months, I also take methyl b 12 5000mcg. The question is can I taper off lyrica and just depend on vitamin b12 shots and supplement?
Sue
I have been taking 5000 methyl b12 for a year now. My last b12 test came in at 2000. Should I stop taking it. Is this dangerous?
Teresa
As it is mentioned here shortness of breath can be a sign for vitamin B12 deficiency. I had fatigue and shortness of breath for a while. I did multiple blood test and respiratory tests. Test showed I am allergic and due to this fact specialist prescribed me with asthma medications. However my symptoms do not improve so much. Can B12 deficiency be a reason while my Pulmonary function tests shows 65% that is not normal?
Amir
Great article
Rosemarie Anthony
lve been taking 1000mcg of b12 chewable every 4 hours l dont seem to be getting any better, how much b12 can you take. my symptoms are back before the 4 hours are back.
Gaye Jones
Hi Gaye – You may want to speak with your physician about B12 injections. The problem may be that you’re not able to absorb oral B12. Ensuring that other causes of your symptoms have been investigated is also a good idea.
Best of luck to you!
-Dr M
cliffmaurer
I was suffering from typical B12 deficiency. After three months of grappling with brain fog, blurred vision, high pulse rate, depression, my blood test confirmed B12, Folate and Iron deficiency. Now, after two months of injection as prescribed by Doctor, there’s an improvement. However, I feel that now I am not yet as good as normal. There is that brain fog that comes and goes. How long will it take for me to be normal again?
Aanand
I have a low B12 of only 19 but my doctor then got my Active B12 checked and it was ok so she is not worried. I get a lot of pins and needles in my feet (not just from sleeping) but get a lot in my arms and hands too (when sleeping). I also have high iron levels and ferritin is up slightly too (246). I sometimes get light headed and my heart races. Could this low B12 be a problem even when my active B12 is ok?
Kate
Hi Jess
Oral B-12 is absorbed differently so the side effect you felt, though not common, is certainly possible. Ask you doc for weekly B12 injections until your levels have normalized
Dr E
I take 5,000 mcgs of sublingual methylcobalamin or methyl b12 every day. Keeps the symptoms away. I don’t need shots.
Teresa
Hello, I have had symotoms of tingling since May, almost like pin pricks mainly in legs and feet but sometimes in arms and hands. I also have a burning sensation on the bottom of my left foot. I visited a neurologist and I have had an MRI of lower spine (showed a minor bulging disc) and blood tests (so far normal). I haven’t yet been tested for B12 deficiency. In the last two weeks I have started feeling a little lightheaded/spaced out. I can see fine but it’s almost like my eyes are tired and I can’t focus as well as normal although sight isn’t impaired. Could this be B12 deficiency? I’m obviously very worried about MS, and wondered if low B12 could present these symptoms too? Would megaloblast cells show up some way in a routine blood test? My iron levels are normal. Thanks for any help you can give.
Jen SCS 2016
Hello Jen – It’s very possible that your symptoms are due to B12 deficiency, and sometimes mild deficiencies do not cause megaloblastic anemia on a blood count. But a blood test for B12 and folate deficiency should be ordered. Other causes should also be investigated as well, but B12 levels are easy to examine.
Our best to you, Jen.
-Dr M
cliffmaurer
Thank you for your reply, Dr. M. Yes I am definitely going to ask for a test for B12 this week, as well as continuing investigating other possible causes. Just one more question for you if you don’t mind: if the deficiency was mild, so as doesn’t show up as anaemia in a blood test is it still possible to have these kind of symptoms? (I was under the impression that tingling etc. Would be more advanced side-effects of a serious deficiency). Thanks and kind regards
Jen SCS
HI Jen – Yes, patients can still have symptoms even if they are not anemic. If your B12 is toward the low end of normal, you can still have symptoms associated with B12 deficiency.
Best to you,
Dr.M
cliffmaurer
Hello,
I posted the comment below back on the 5th August and you kindly replied to me:
(Hello, I have had symotoms of tingling since May, almost like pin pricks mainly in legs and feet but sometimes in arms and hands. I also have a burning sensation on the bottom of my left foot. I visited a neurologist and I have had an MRI of lower spine (showed a minor bulging disc) and blood tests (so far normal). I haven’t yet been tested for B12 deficiency. In the last two weeks I have started feeling a little lightheaded/spaced out. I can see fine but it’s almost like my eyes are tired and I can’t focus as well as normal although sight isn’t impaired. Could this be B12 deficiency? I’m obviously very worried about MS, and wondered if low B12 could present these symptoms too? Would megaloblast cells show up some way in a routine blood test? My iron levels are normal. Thanks for any help you can give.)
I have since had my B12 levels tested and my results were 200 picog/ml (range 197-866) – this obviously doesn’t show a clinical deficiency as such but could 200 be low enough to have the symptoms I mentioned in my earlier post? They haven’t really improved and I have also had tingling/buzzing in my thigh since then and the odd twitch in other places too. Doctors are obviously looking into other things too and the neurologist has prescribed me a ‘nerve protector’ as she called it which also contains 1765mcg of B12. I have been taking this for 8 days, how long would it take to see a difference from a B12 supplement like this? Would I already have noticed a difference? Thank you for your help.
Jen
Hi Jen – A level of 200 can certainly cause symptoms like this, though it’s hard to say having not met or examined you whether or not this is definitely the cause. It can take 4-6 weeks or even longer to see symptoms improve even with supplementation, but it sounds like your doctors are doing a good job of considering different causes of your clinical picture. I’d recommend asking your neurologist how long she or he expects before you see improvement and also get a good understanding of what else they have in mind so you can keep up with the testing they recommend.
Hope this helps, and best of luck to you.
Dr. Maurer
cliffmaurer
My B12 level is 79, I have had 5 injections and felt a little better for a few weeks but am now back to feeling tired and low. I am due some more blood tests but don’t feel as if the doctor understands how I feel and the possible implications if I do not get the treatment.
Linda lee
I was diagnosed last week with a B-12 and iron deficiency. Received a 1000 mcg injection yesterday, not scheduled for the next until next month. In the meantime, I took a 1000 mcg pill, and am now feeling crazy tingling and a bit lightheaded after about an hour.
What? Am I supposed to feel worse? I had no reaction to the injection, other than possibly feeling a bit better!
Jess P
Hi Julie
Yes: get your levels measured
Hi Nicole
Skin lesions of all sorts can occur with B-12 deficiency, including eczema. Get the B12 level up!
Dr E
Ive seen varied information on b12 and skin problems. I have all the typical symptoms of low b12 (level was 146) but have struggled with eczema along with these other symptoms. Is this something people commonly see?
Nicole
Can b12 cause twitching randomly all over the body?
JulieB
I am a pretty strict vegetarian and I do not routinely supplement (mistake I know). I started having odd sensations soon after becoming a vegetarian (heart palpitations, increased anxiety) which after years I started getting peripheral vision flickering once in awhile and then also hand pains (sporadic piercing pain with just a strange sensation in my forearms). That started about five years ago. I have been a beg for nearly 10. Recently the pain I experienced in my hand was felt all over arms and legs sporadically… Just not as piercing. More annoying. Also RLS. I started supplementing with oral b12 pills and then a week later had my serum levels checked. They were 386. My dr did an injection. Since then my symptoms got strange. Now I’m noting on and off tingling (almost a numbness tingling but I’m not actually numb) in my arms and legs that comes and goes. Never impacts my motor skills and my neuro exam by my PCP is normal. I also have experienced a migraine last evening (only ever had one other that was about two months ago). I’m really freaked out. Any ideas?
JulieB
Hi just had blood test waiting to get results, l have had ringing in ears, tremors in left leg, burning feeling in toes, fatigue,looking pale, hard to walk at times, heart palpitations, could it be iron or b12 deficiency or folate
Gaye Jones
Hi Gaye – B12, folate and iron problems could cause these symptoms, but they could also be caused by a myriad of other health issues. If your doctor knows about all of these symptoms and your health history, he or she can investigate all causes and hopefully come to some approach. If you’re in the Chicagoland area, we can also help.
Best of luck to you.
-Dr M
cliffmaurer
Your symptoms are caused by Vitamin B Complex deficiency which commonly happens when you are either a coeliac or when you cannot digest wheat and gluten properly.The jejenum (part of the alimentary canal)is damaged by the grains you are eating and therefore cannot absorb your nutrients, particularly the B vitamins (1 through to 12)
Take all grains out of your diet, including the hidden ones in sauces,sweets,sausages etc. This problem is basic Bio Chemisry. Try it…it doresn’t cost you anything to eat grain free for a month to see if it works for you. Also look up each individual B vitamin and compare your symptoms against the list of problems caused by B complex deficiency. Also a good wheat, gluten and dairy free multi vitamin will help while your digestive system repairs.
Jane
You all need to go on a gluten and gliadin free diet.
B vitamins are not absorbed if you are coeliac or gluten intolerant.Check out all of the excellent information on line regarding gluten/gliadin intolerance.
Jane
I am having vitamin b12 under 200, low vitamin C, low testestorone, low TSH which caused hypothyoridism.
Currently I am in lot of stress due to my employer and possible fear of job loss.
I feel like I am in depression.
Taking levithrixine and predistine.
Please help me if these medicines are correct.
Sunil
Hi Sunil – Difficult to say if you’re on the right medications without knowing your full clinical picture. We at WHC would approach this from the standpoint of wanting to work on your body’s ability to absorb stress, deal with depression and anxiety while also ensuring that your B12 issues are addressed and your thyroid medication is appropriate. If you’re in the Chicagoland area, our nurse practitioner Maureen Milota would be happy to see you for a second opinion on these issues as she is quite expert in helping patients deal with them. If you’re not close to us, finding a good integrative practice would be beneficial.
Best,
Dr M
cliffmaurer
I have low normal vitamin b 12 with lots of symptoms of defiency with weak legs, burning knees, loss at exertion. Lots of tests. Neurologist does not think it is from vitamin b 12 as leg issue in thigh and calf not feet. Could that be?
Cynthia
Hi Cynthia – Thigh pain can come from such a vast array of causes that it’s difficult to determine. Typically a vitamin deficiency will cause symptoms in a variety of places; not just one location. While a low vitamin B12 level might stall your healing, it’s best to make certain that your thigh pain is diagnosed properly. Most chiropractic physicians can help with an accurate diagnosis (pinched nerve, slipped disc, referred pain from muscle issues, etc), and seeing your neurologist is also a good place to start.
-Dr M
cliffmaurer
I’m with all of you. Been looking for an answer to my fatigue, tingling leg, burning skin feelings, tummy trouble, etc. for about 9 months. First B12 test came back at a level of 250. Supplements helped, but I stupidly stopped taking them and symptoms came back with a vengeance. I won’t stop again, but that at least showed me it must have to do with my B12. Here’s a question: How many of you are on proton pump inhibitors? I’ve been on them 10 years and am working to get off. My GP scoffed at that idea, but I read articles EVERYWHERE that substantiate the fact that they can cause this problem. Now I am going to a natural therapy doc. I think my B12 problem is a symptom of a larger problem, possibly those awful drugs’ impact on my body’s ability to absorb nutrients. I would be interested in any other comments about PPIs. It’s worth considering whether that is a factor for any of you.
Lindsey
I’m on a very low does ppi but have just found out I have coeliacs disease so I know what’s been causing all my problems now.
Bex
I feel better knowing I am not alone. Have been battling with tingling of lower limbs. Started treatment (injections) in January & felt much better. The tingling then developed 5 months later and I am so distracted!
Cathy
Hi
I’m 25 y/o
Ten days ago I woke with the left side if my face numb and after spending done time on google I thought it might be B-12 deficiency because I’m built thin 122lbs so I went and got a bottle of B-12 supplements . So far the numbness went down to my left upper lip and left nose gate … The question is should I still go get checked or am I doing fine so far?!!
Thank you
Nova
It’s good to hear that the numbness has gone down, but if the symptom persists, you should definitely get it checked out.
Best,
Dr M
cliffmaurer
Intrinsic Factor Supplement
does irt work
frffffd
I am 35 and have been diagnosed with b12 deficiency of 115….so tired and my body hurts. Starting injections in July 3 times a week for a fortnight, then every three months. When will I be well again? I have also gained 3 stone? Is this usual?
Jess
Hi Jess – Not unusual symptoms for B12 deficiency at all. You should start to see some improvement after about 8 weeks of therapy.
Best of luck to you.
-Dr M
cliffmaurer
Hi Dr M
I was diagonised with vit B12 deficiency last November after suffering for years. 6 weeks ago I started oral vit B12 treatment (2000mcg per day) but my symptoms persisted. Last week my haematologist found that I was magnesium and phosphorous deficient as well and gave me magnesium sulphate intraveniously. I feel so much better and stonger now. I am wondering what the connection magnesium deficiency has with vit B12 deficiency, if any.
Ps. I’ve been through a bunch of neurology test with negative results and psycological treatment which didnt help at all. So for those who are freaking out about MRIs and such, don’t worry. Its probalbly just the pesky vit B12!! Who knew a vitamin could cause so much trouble 🙂
Maluba
HI My b12 is just a little a bit low and I am waiting to have a antibody test to find the cause.I have tingling in my feet and hands and joint pains.I also have low vitamin D and folic acid which I have started taking tablets for.One doctor I saw said the my b12 was not low enough to cause tingling and aching and dismissed my low vitamin D levels (27) as not causing the aching so have been sent to see nueroligist in August !Very worried now!
jenny
I have been experiencing tingling hands especially when I sleep. I had to beg my physician to get my B12 checked. It is 243. Since it is between 211-910, my doctor says I’m fine and will not give me B12 shots. What can I do on my own to raise this level? I do eat meat regularly so I must not be absorbing it. What is the best way absorb B12 through supplements and how much?
Mallory
Hi Mallory – Making certain that you’re on the right type of B12 is essential. A simple blood test can tell if you need methylcobalamin or cyanocobalamin. Looking for a sublingual form (one that dissolves under your tongue) can also boost your absorption. Best to start with the dose on the bottle.
-Dr M
cliffmaurer
Hi Bex
If you have a copy of your lab test. 141 is very low. It’s virtually impossible to overdose on B-12 so getting 2-3 injections a week until you’re in the “upper normal” range seems the best thing to do
Hi Dani
It’s possible low B12 is causing these symptoms. Have yourself tested
Dr E
Dr E
Hi. My B12 is definitely 141. I’ve had 12 loading jabs & GP Sx have referred me for an endoscopy. They will not give me any more jobs so I’ve bought some sublingual lozenges to see if they help. If it gets too bad I’ll just have to go back until they get fed up with me.
Thank you for the reply!
Bex
Hi I’m just wondering if my low b12 is causing a feeling of popcorn kernels being stuck on the left far back of my tongue. I do suffer anxiety so i am convincing myself it is oral cancer 🙁 my GP did have a quick look just by tongue depression & said she couldn’t see anything sinister. I am still worried. Could it be my b12?
Dani
My B12 is 141 & am getting bad joint pains. I had 6 loading jabs and because symptoms of tingling & fatigue returned have been given 6 more every other day. After that they won’t give me any more even though guidence is to continue with injections. What do I say to my GP to convince them?
Bex
Please beware that B12 deficiency can present itself as MS on an MRI in the form of white matter lesions. Very misleading, wasting patients time and money like they did me for over a decade.
Liz
My husband has white areas on his brain,was a vegan for years,is MTHFR C677 homozygous, and now has a tremor.
I wonder if his lesions and tremor were caused by b12 deficiency? And if they were, at what point is it irreversible?
Are you on b12 now and is your condition improving?
Teresa Strong
I actually tested with very high B12 and folic acid. I was tested because I had macrocytic anemia. It wasn’t until I was tested for MTHFR that I realized that I can’t convert non-methyl forms of B vitamins. Once I started on the right b vitamin supplements, my symptoms started to go away. The facial numbness has lingered the longest, and every so often I feel a barely perceptual little twinge. This is two years after initiating treatment. The immediate things I felt was my stomach felt much better and I started to salivate again. After about two weeks, I noticed my balance and agility coming back. It could be that you need to take all the b vitamins to get the results I got. And make sure your b vitamins are labeled active, coenzymated, methyl versions. This made a huge difference to me. I also had to take iron. Have you tested for ferritin levels?
Teresa
It took about a year for the numbness to go away—slowly
Teresa
Hi Dani
You need your B-12 at least weekly, although twice weekly during the first month would be fine. 270 is VERY low!
Dr E
Thankyou dr E yes I really thought the same I don’t know why my doctor has me on monthly, I will go back today and get another 🙂
Dani
Hi I was having numbness in right side of face and MRI came up fine. My b12 was low 270 (active b12 36) so I had my first b12 injection 3 weeks ago. Today I am feeling the numbness in my face all over again. My question is should I be having my b12 injections more often? As my doctor had told me once a month. I feel as though I may need it sooner than that.
Dani
Doctor where do you practice? Not sure what is wrong but tonight and some times and I am shaking being cold, when in room is so hot… Was shaking being cold the whole night and had heart palpitations … Heart palpitation I having almost every night… And is happened when I lay down… When I stay or sit doesn’t feel that much… What it could be? Also have some times numbness in my feet too? And suggestions and recommendation on which Doctor I should visit in Washington state, great Seaatle area, please? My family doctor I visited last time is a joke… Please help, thanks
Lina Pastars
Our practice is in Chicago, Illinois. I’m sorry to hear that you had a bad experience in Washington State; luckily the Pacific Northwest is full of exceptional integrative practitioners. I’d suggest getting the opinion of a Naturopathic Doctor. Washington is home to one of the best Naturopathic colleges in the country; Bastyr College.
-Dr M
cliffmaurer
I am having facial numbness tingle right side of temporal area that comes and goes. Very weak and when I got to the doctor nothing shows. I am compound heterozygous Mthfr and not on any b vitamin afraid to start due to all of the bad stories and side effects of it. I have been unable to find a doctor who knows how to treat it. I am looking for a doctor in WV. How and what kind of vitamin to start with?
Suebee
I have been getting flu like symptoms after exercise that last from hours to days over the past year. The symptoms are getting progressively worse. I was doing treadmill at 4.4mph at 9% grade then swim 8 laps for years. All of a sudden the symptoms developed. I have had blood tests visited many DRs and nothing can be found wrong. Now I find it difficult to just walk without getting sick later. Could B12 deficiency produce these symptoms?
jef
Best to have lab work performed to determine your B12 status.
Dr. R
My B12 is 397, on the lower end of normal 211-911 pg/ml. Could that be considered deficient?
jef karchin
Hi Jef – 397 is not technically deficient but it can, in some people, cause symptoms. Best to discuss this with your family physician. If you’re in the Chicago area, our doctors (medical, osteopathic and chiropractic) would be happy to help.
All the best,
Dr M
cliffmaurer
How that blood test to find out in you low on anemi? Because I was checked for B12 test and it shows good but what should I ask to test to find out? Bc I have all the symptoms for megaloblastic anemia and also have gastro and digestive problems … If you would help me… Done many blood tests and cardio and Doctor cannot find the problem… ND Doctor …
Lina
Hi Lina – Difficult where to say you should go next. I’d recommend finding an integrative physician at the Academy for Advancement of Medicine (acam.org) or the American Holistic Medical Association (https://www.healthy.net/scr/PractitionerSearch.aspx?AssocId=36). Both sites have search pages to find a doctor near you.
Best of luck,
Dr. M
cliffmaurer
I am 36 and recently diagnosed with B12 deficiency too. I have numbness on my tounge, right palm and also right feet. Given an injection last week, seems to have some improvement. Advised to take 3 in a row for 3 weeks. Hopefully can cure my problem. Doctor said reason for my deficiency is due to Leaky Gut.
Evelyn
I have had a big loss of B12, anemia, gastritis. I was at count of 30 B12. I think I should have been in a hospital but toughed it out. I am getting B12 shots every 2 weeks, taking B12 Vit.s and Folic Acid (every day). When will the pain and numbness finally leave my body?
Kim
Hi Kim – If B12 is the cause of your symptoms, it can sometimes take 6 months or more for you to see lasting results.
-Dr M.
cliffmaurer
I had symptoms of B12 deficiency and my doctor told me I was fine a 134. In Canada >133 is acceptable, however my sleep specialist told me I was deficient. Went on Bcomplex 1/2 yr. later began feeling off. Figured out I have MTHFR so began taking Hydroxocobalamin. This makes me unwell, constipation and head aches. I suffer through to improve the tingling hands for a time and then back to square one. What could possibly cause B12 to shut down motility? Thank you
Jackie
Can symptoms of a vitamin b-12 deficiency be unilateral vs bilateral? Or is it usually present in both sides/extremities?
NEW MOM
My symptoms were always on the right with the stumbling/falling and the facial numbness. I felt the tingling in both feet and hands. I couldn’t believe it was b12. I had religiously taken supplements since I was a vegan, but since I have the MTHFR defect, cyanocobalamin and folic acid don’t work for me. I had high levels of both in my blood, but they were in unusual forms for me.
Teresa
how can you tell if you are not absorbing it, and if so, do you need injections forever?
Jo
Hi Joey
Yes, you probably aren’t absorbing it correctly.This really is not an uncommon situation. Your doctor can test you for this and treat your low B-12 with injections
Dr E
I just got a blood test done and i am deficient in vitamin b12. I have low testosterone, insomnia, and acne. I eat a ton of meats, probably too much. I don’t get how i can be deficient in b12. Maybe i dont absorb it or something… any thoughts on this?
thanks
Joey smith
Dan,
Did you get any results back yet?
Trish
I did! Yes thankfully it was a normal result! So my doctor now believes that is indeed my borderline deficient b12 level. When they tested for active b12 it was 36 which said is the beginning of pernicious anaemia. I will be starting injections this week and hopefully they take effect soon. I’m not sure how many injections people have before feeling any better
Dan
I also experience tingling and numbness to various fingers… thumb, index & muddle or pinky, ring and middle to both my hands. It happens every morning or middle of the night when it wakes me because I can’t feel my fingers. It started to radiate to my forearm yesterday afternoon for hours and my hands felt cold as well. I then felt numbness to my right side of the face by the lip area. I took 2 baby aspirins to thin my blood for better circulation and felt better. I also took the aspirin cause I thought that I was having a stroke but evaluated myself at the mirror by making faces looking for facial droopiness. Everything looked symmetrical so I did not worry. My pount is… Theres alot of us who go through the same medical issues as you so dont feel like you are alone and start panicking. I am in the medical field working in a hospital so I am very fortunate to have access to knowledge without having to schedule an appt. B12 deficiency is the possible culprit everyone says… Youre MRI script is most likely to check for a cervical nerve impingement which is a common thing. Good luck and stay calm
tingly
Thanks so much for your advice. I did get my MRI results back as normal which I was SO relieved!! Although my MRI was very quick as I suffer from severe claustrophobia & anxiety. My doctor is going to start my b12 injections this week as she now thinks it is my b12. I noticed though that after finding my MRI result was normal my symptoms have improved already so I think anxiety also played a big part in my symptoms.
Dan
I also had numbness on the right side of my face, plus a couple of boughts of pain that felt like I had slammed into a corner–right side of my nose through my lip. I also started to stumble to my right. One of the first noticed when I started on methylcobalamin was that my balance came back. The numbness comes and goes, just a second or so between months of not feeling anything.
Teresa
Teresa are you on b12 shots? I have a prescription from my doctor for 5 shots but she said that I needed the MRI as she does not think the facial numbness is caused by my b12. Agh my head is a mess I can’t eat or sleep.
Dan
Dan,
I have been taking 5,000 mcgs of methyl B12 sublinqually for 20 months now. On top of that, I take 15 mg of methylfolate. Have you ever been tested for MTHFR? That’s my issue. I was b12 and folate deficient, even though though my blood tests showed that I had high levels of b12 and folic acid. I still had the nerve damage, sleep issues, and macrocytic anemia. I never had the b12 shots. The sublingual tabs is all I needed. I felt the effect immediately. Hope this helps.
Teresa
Teresa so far have not been tested for anything other than a blood test which showed b12 was borderline defiency, I’m also low in iron, but the doctor sent me straight for an MRI for tumours or MS which is why I’m so scared. I’m really hoping I can rule those out and just start on the b12. Getting my results in a few hours. Thanks for your reply it helps to hear from people going through the same symptoms xx
Dan
Hi Sarah
Yes
Hi Dan
Yes
Get B-12 injection until you’re 600-700 and see if this helps
Dr E
Thankyou so much Doctor E. My doctor sent me for an MRI even though I showed her my b12 levels. I’m now in a panic waiting for my results. I’m 33 year old female and I’m scared of tumours and MS. Really hoping my face numbness is just from the low B12. What do you think?
Dan
Hi Dan. I went through the MRI tumour and MS scare too. Loads of other test as well. All came out negative. I still dont know why my B12 levels keep dropping and symptoms persists. But at least I can tell you that you are not alone.
Maluba
Thanks Maluba it eases my mind hearing people have been in the same situation, glad things were all clear for you, I get my results tomorrow, praying it’s just by b12 also x
Dan
My b12 is level 270 and I am so tired. Also some numbness in my right hand and right side of my face. Would these symptoms be due to my b12 levels?
Dan
Hi, please help if you can. My B-12 level was 300. But my hands, feet and face are completely numb and have been for a week or so. I have had trouble digesting many foods for at least the last year and throw up within minutes of eating sometimes. Any chance my numbness is from low B-12? I have seen multiple doctors and none have been able to help so far. Thank you!
Sarah
Hi Kendra
This does not sound like a B-12 issue. I suggest locating a physician who knows functional medicine and check your son’s digestive system with a test called Comprehensive Stool Digestive Analysis (Genova Labs). Food sensitivities are another possibility. The usual culprits are: dairy, egg, corn, gluten grains, citrus and soy. If it’s possible to eliminate these for just about a week, you be able to tell if food sensitivities are a possibility
Dr E
My 3 year old son has a speech disorder called apraxia. He also has frequent pains in his legs that he often cries about at night as well as being very shaky intermittently and having frequent loose stools (up to 3 times a day). His speech has improved greatly by adding fish oil and a nutritional shake, which lead me down the path of pursing a nutritional issue as the root cause. I recently had his b12 levels checked in an attempt to pinpoint a nutritional deficiency and his level actual came back high around 1500. The CBC and diff looked fine and his bit d was slightly low as well as his bilirubin. I am leaning towards a functional deficiency of b12. I’m having a hard time finding a dr that is knowledgable of bit b12 deficiency in the absence of low serum levels. Any advice on further testing? Thank you!
Kendra
Cipro is a quinolone which can cause all sorts of mischief in people who are sensitive to it. the symptoms you’re describing should subside but yes, get your B12 measured
Dr E
Hi ! So I have had a history of anxiety and panic attacks but was 100% symptom free until 6 weeks ago when I took the antibiotic cipro for 4 days . Now I am so tired , anxious,lightheaded and having extreme fatigue and weakness in my legs . The more research I have done it is saying that cipro could have wiped out my b12 and cause these problems . Have you heard of this ?
Michelle
Hi Saleh
If the numbness is caused by low B-12, it does take awhile to improve even when your levels return to normal. I think it would be helpful to see a neurologist to make sure the numbness is due to B-12 deficiency alone AND a psychologist to help with your anxiety
Dr E
Dr.R,
Problem is that the majority of doctors won’t even read articles like this if you show them. They write a prescription because that is mainstream Medicine except for Functional Medicine Doctors.
Sam Barbary
Just want to add two things even though it has nothing to do with B12 a person mentioned collagen:
1. A copper deficiency can cause collogen and connective tissue issues. Arteies are susceptible to aneurisms. Besides getting an RBC copper test collogen repair responds well to L- carnosine.
2. A copper deficiency can mimic anemia or iron deficiency. Do, if you doctor prescribes ferritin for a suspected iron deficiency, a test for copper deficiency should also be done. Why? If the anemia is actually caused by a copper deficiency, supplementation with ferritin will do more harm especially in diabetics.
Sam Barbary
Hello
I have been experiencing symptoms that seem consistent with a vitamin b12 deficiency- tingling, numbness, etc. I had levels checked and the b12 level was 474. Folate was 38. I am 31 and 4 months postpartum. Symptoms started about 5 weeks ago. Is my b12 level low enough to cause these symptoms? I didn’t think so but in getting conflicting advise. I’ve been taking a prenatal vitamin that includes a b22 supplement for about 16 months. I have a history of vitamin d deficiency (19). I am breastfeeding and lost all pregnancy weight (25 pounds) in about 4-6 weeks. Now currently under my prepregnancy weight by a few pounds.
New Mom
New Mom. It’s probably best to get lab work to determine you B12 and D vitamin levels prior to supplementation.
Dr. R
Hi doctor,
If Doing B12 test during menstrual cycle..does it affect the B12 result??
Sondos
Sondos. Shouldn’t make a difference.
Dr. R
Hi Doctor E,
This blog is very useful, I have b12 difficiency and my treatment is under going getting per day injection of methyl cobalamin for 7 days, and then three injections I have to take for three week then per month for a year.
My question is I am still feeling numbness, tingling, stress and anxiety now almost 6 injection done with taking pregabalin 50mg per day with omeprazol 20 mg but still not feeling comfort… Feel little bit headache, 15 to 20 min high anxiety after that tingling needle started in hand and feet.
Let me know should I continue the treatment or I should consult with psychologist.
Many thanks in advance looking forward to hear from you,
Best Regards,
Saleh Khan
Saleh
Hey,
I have a strong feeling that I am experiencing the effects of B12 deficiency. I have a huge amount of fatigue, lightheadedness, brain fog, headaches, heart palpitations, weight loss, dizziness, and reduced peripheral vision. I have a doctor’s appointment next Friday. Since I think this is the cause of my problems I got B12 yesterday and have so far taken 2mg (2,000 mcg) over the last 24 hours. My fear is that if this is the case, then taking the B12 might mask my deficiency to the doctor during blood tests and I will show up a negative. While I know the psychological symptoms will last longer, I do not want to stop taking my B12 during this time because the doctor said I didn’t have to.
My question is, should I stop taking the B12 until I get a blood test so that I can show accurate levels in my blood and prevent a false negative?
Dave
Dave. It’s always best to know your levels prior to supplementing so that you can dose properly. It is extremely important to recheck levels to determine if the supplementation is making appropriately changes. Work with your doctor to determine a course of action based upon both clinical assessment and lab testing.
Dr. R
I am 32 years Male, (pls bare with my English is poor)
Two weeks before i have been diagnosed with Low level of Vitamin B12.
My B12 is 175 pg/ml (Std is 211-945 pg/ml)
since last 4-5 years my life become miserable as I have been suffering with various different issues /symptoms. (now understood those all are related to B12 deficiency) mostly of digestion, bowl movement (constipation + diarrhea), Muscle pain at neck, back & knee, anxiety, fatigue, weakness, bizarre tongue, vision loss, little bit tingling numbness etc..
I made visits to many doctors/Specialists but never i voluntarily explained neither doctors asked me for such bunch of other symptoms. So all and every time i was treated against particular symptom and never diagnosed for B12 deficiency.
Now since last two months i am started having Sexual dysfunction also (not getting & unable maintaining erection)
Currently i have been prescribed for 10 injections of B12 (Methylcobal 500 mg) one every alternate day. Out of which 7 I am already done with, rest 3 will be completed by this week.
So far i have not observed any change in my miserable life.
Sir/ Mam – pls help me to understand when will I get relief, or shall able to fell the change due to treatment?
also pls tell me if my Sexual problem is related to this vit deficiency or not ?
is this some kind of irreversible damage happen to my nerves ?
should I visit again some specialist for Sexual dysfunction ?
Pls HELP me
thank you very much
-Loki
lokesh
Hello,
I have been vegan for 3 years and used to take B12 1000mcg cynocobalamin (oral tablets) up until December I switched to 2500 mcg methylcobalamin sub-lingual (no reason for the switch, I actually didn’t realize it). Within 2 months I was super speedy, losing weight rapidly,shaking,anxiety. Bloodwork showed B12 = 1534 and a slightly overactive thryoid. I stopped taking the B12 after bloodwork (end of January) and have been drinking it in fortified coconut milk. Bloodwork in Feb. showed normal thryoid and B12=844. All the symptoms above are gone but now I have insomnia, heart palpitations, anxiety, nausea, lightheadness,brain fog, increased blood pressure and at times I feel food runs right through me. A lot of the symptoms seem like a B12 deficiency. Can this be from my level almost dropping in half in 2 weeks? I just started seeing an Endocrinologist and he said no.
Elaina
Hi, I found out yesterday I am B12 and D deficient (213 and 13 respectively.) I have a collagen disorder (Ehlers Danlos) as well. I’ve been on probiotics for 3 months as my digestion has been my main symptoms, and things had improved although in the last week my system has become disrupted, somehow. My doc is giving me Vit B shots and he advised me to take D supplements. I’m 47, take exercise and have a good diet. All my bloodwork was ‘fine’ and I don’t have anaemia, although I’ve always had slight macrocytosis. I wondered, are low vitamin levels a long standing thing – i.e., is it something I’ve likely always had (I suspect malabsorption in my case??) or can they fluctuate? I suppose if it takes time to get them back up to acceptable levels, it figures that it takes time for them to get so low??
Thanks for all your excellent advice on this blog.
Jo
Hi Sarada
As a vegetarian you should simply stay on a B-12 supplement. If you don’t you will eventually develop a deficiency. Yes, low B12 can affect your periods
Dr E
Hi doctor E,
This blog is very good. I got to know in detail that wt I was having (fatigue, mood swings) are really symptoms. I have been diagnosed as difficient in bit b12. I am a vegetarian. I have been advised to take pills for 2months.. In order to maintain my levels wt should I increase in my diet. Does this defiency also cause light periods?
Sarada
Candida overgrowth can cause similar symptoms. Have you been checked for it?
Terri
My B12 was 130 and symptoms of tingling and coldness in the feet and hands. Injections each month for past 5 months but symptoms remain. B12 now 400 told nerve recovery could take 6 months to a year does this make sense to anyone please?
Amery
Hi Amery –
Nerve recovery can take, in some cases, at least 6 months and sometimes longer. It sounds like your B12 levels have recovered pretty well. Investigating other causes such as an under-active thyroid or a host of other causes might be worthwhile. I suggest checking with your doctor to see if she or he has checked other causes for your symptoms. Additionally, checking to see if you have a methylation gene mutation (MTHFR – essentially a malfunction in how your body handles B12) would be a good idea if this has not already been done. It’s a simple blood test and can help determine if a methylated form of B12 would be more appropriate for you.
Best wishes,
-Dr M
cliffmaurer
Hi Brent
Have your doctor test blood levels of zinc before supplementing
Dr E
Thanks, Dr E-
If I may, my Zinc levels (per urine) were quite low. Cooper was fine. Never did a blood test. Supplement away? 30-50mg? How long ’til levels restore, you think?
Grateful for your response.
Best,
Brent
brent peterson
Hi
You probably should simply stay on weekly injections–perhaps your doctor would allow you to self administer these at home.I think you will feel better once your B12 is not only normal but remains steady
Dr E
Hi. My B12 levels were 126 and my doctor gave me four weekly B12 injections after which my levels went uo to 856. I continued to feel sick however. A month later my levels were back dow to 141. What could be causing thus drop? My symptoms are getting worse too.
Maluba
Hi Brent
Your B-12 is normal but your symptoms could be related to an imbalance of zinc and copper.
Dr E
Hi. 3 years of anxiety, poor sleep, brain fog (bad), low energy, tingling legs and feet, and ringing in my ears. Bunch of antidepressants didn’t work. My B12 is 619. TSH testing normal. Could that B12 level be low and cause problems? Took a complex b but it often makes me more nervous.
Brent
Thank you! I like Thorne products and read that folate was better than folic acid. Many of the good brands have methyl folate, not folic acid.
Is there a product you recommend for hair and nails? My hair is quite brittle, nails are dry and splitting. I have been taking a b complex, coconut oil (1tbs in my coffee) b12, vit C and iron for the past 3 months with no noticeable change. I know it’s not enough but I feel like I have pills everwhere! I eat very well, but clearly malnourished and not absorbing the vitamins from my food. Hoping the enzymes will help with hcl.
Smitty
Hi
Thorne is an excellent product but it may not be right for you. Return to your usual product with your B-12 and for iron try Feosol Carbonyl Iron one daily. Discontinue iron when levels are good. The Critical Digestion is fine
Dr E
I love your website and want to thank you so much for your feedback!
My b12 levels continue to rise with sublingual supplements…I went from 95 to 598 on a recent test, within 3months. Ferritin is not coming up as quickly though.
I tried using Thorne’s B Complex, and I reacted badly to the product. It has folate 5-methyl, 400g, which is the only diifference I can see compared to my usual product that has folic acid 400g. Any ideas why I would react…palpitations and felt very “wired” the next day. Obviously I stopped taking them, but I am currious for the reason(s). Any thoughts?
I always take my b12(1000g) sublingual with my b complex.
Also, I didn’t realize it but I started taking Critical Digestion and I realized it has lipase enzymes derived from fungus? Is this safe to take for people with a history of Candida/yeast infections?
Smitty
My hemoglobin and hematocrit are normal. B12 is 426 but I have lots of deficiency symptoms. I’m also hypothyroid. Sublingual tablets have been advised but they make me sleepy. Any thoughts?
Samantha
Hi Samantha – Many symptoms of B12 deficiency can be attributed also to hypothyroid. Even the sleepiness you’re experiencing could be more of a thyroid issue than a B12 problem. I’d recommend that you make certain that your primary care physician knows all of your symptoms and that you fully discuss your thyroid problem with him or her so that the cause of your symptoms can be determined.
Best wishes,
Dr M
cliffmaurer
I have a b12 level of 62 and a haemoglobin level of 113.0 I feel so very ill.
Claire
No weight gain from B-12 injections but make sure you get your level to at least 400
Dr E
hi DR E,
i checked the B12 levels i have 163 while the normal being 187 and the doctor have advised injections as supplement.
All i wanted to know is will these injection lead to weight gain??
Rose
What does low red cell count mean
Dennis rich
Hi Dennis – A low red cell count can mean anemia and can arise due to a variety of circumstances. This should be discussed with your physician.
Best wishes,
-Dr M
cliffmaurer
Can B12 Deficiency cause hot feeling in toes
Gaye Jones
Hi
You can use Critical Digestion with Betaine. Adding the pepsin is unnecessary
Dr E
This blog is really fantastic! I’ve learned more here than from my own specialists and doctors.
I suspect that my low b12/ferritin absorption is caused by GI problems, specifically low stomach acid. The product “Critical Digestion” has really helped, thank you for the recommendation.
I stopped using the ppi Dexilant that I was prescribed for Silent reflux(LPR). I am experiencing a rebound which is not fun, but I’m pushing through it. It was making my digestion worse, although it did help my throat. I’ve been using it for 10 weeks.
My question is can I use Critical Digestion with HCL? Also, which product should I use…Betaine HCL with Pepsin or regular Betaine HCL?
Smitty
I found that taking methylcobalamin got rid of my need for ppi medications. And I now believe these antacids partly caused my B12 deficiency. I don’t have any stomach problems at all since taking methylcobalamin, 5 mg sublingual daily. And I had stomach issues all my life.
Teresa
Hi Rajni
You definitely need weekly injections until your B-12 gets to about 700. Your doctor should run tests to check your B-12 absorption capacity. When the B-12 levels gets as low as yours there is often a problem with your body’s ability to absorb it
Dr E
Hello dr E
Normal range on my lab report is 180-900 pg/ml
Rajni
Hi Rajni
That level is extremely low based on current standards. Take a look at the “normal” range on your lab report. These are a pair of numbers between parentheses and let me know
Dr E
I have b12 level 56 ,what should i do ..i should take injections or methycobal tablets ?? Please hep me
Rajni
Dr. E…thanks so much for your information.
On December 1st, my b12 was 95 and ferritin 22.
I was not offerered shots even with a family history of pernicious anemia (my mom has it). I started taking 5000g of b12 methylcobalabin (Natural Factor) in the am with a multivitamin with iron and another 2000g in the evening. My diet is high protein and has been for a few years, so diet is not a factor.
My recent test this week has my b12 at 502 and ferritin at 30. How real are these results given that I am supplementing? Is it still possible that I have pernicious anemia, since I can’t move my b12 up on diet alone?
I did not supplement the day of the test, but I did the day before.
Smitty
Hi Smitty –
It’s likely that your test results improved because of your supplementation, which is its purpose. The diagnosis of pernicious anemia requires other indicators, not just B12, and if you had pernicious anemia it would likely not improve with supplements alone; it typically requires B12 injections to bump the B12 up. Sounds like your levels are improving though, which is great.
Best,
Dr M
cliffmaurer
Hi, I was diagnosed with pernicious anaemia last summer following a long period of misdiagnosis of anxiety/depression. I was being treated for trigeminal neuralgia at the time and the doctors prescribed antidepressants alongside my pain medication. Luckily a change of doctor gave the correct diagnosis and suggested my nerve damage could have even been caused by the lack of b12. My level was extremely low and I was unable to walk up the stairs without hyperventilating, which was put down as panic attacks by previous doctors. So thank you for spreading the message! I do have one question, I’ve been receiving injections since last summer and until my last one I’ve felt great, however most of my symptoms have suddenly returned over the last couple of weeks, my doctors seem at a loss as my blood tests (b12/folate/iron/thyroid) are all normal. Could this just be a blip while my body is repairing long term damage or is there anything you could suggest testing for? My diet is good and healthy so I wouldn’t expect another vitamin deficiency. Thanks in advance, Julie
Julie
Hi Julie – This could certainly be, as you say, a “blip” but be sure to discuss your symptom return with your physician, noting any new issues that may have arisen. It’s possible that additional work-ups should be ordered, and the proper course of action comes from a thorough conversation with your doc.
Our best wishes to you,
Dr M
cliffmaurer
Joanne:
Gluten sensitivity is associated with low B-12 and I would suggest weekly injections for a month. If no improvement you need to have your doctor consider other causes for your symptoms
Lara
At 700, it is unlikely B-12 deficiency is the culprit so you need to have your doctor look for other causes
Dr E
I have been experiencing tingling on the soles of my feet for about 4 weeks, started in one foot and now both. It comes and goes, more prevalent when I’m sitting still, I don’t notice it when I’m moving. My doctor checked my B12 and it was in the 700s, however I had started oral supplements about 5 days before (1000mg). Do you think the oral B12 could’ve raised my level that much so soon, or is it more likely that i didn’t have a deficiency. The symptoms are continuing, so if it was the B12 deficiency causing it, how long would it take for the tingling to subside? Thanks for your help.
Lara LeRoy
Hi: I have had numbness in my legs for about 2 months now and a lot of other symptoms that could be attributed to B12 deficiency… (problems waking in morning… very foggy, very disconnected…)… in December blood work showed that my B12 were around 1078 and 3 weeks later when I had stopped gluten, they went down to 600 something… I started tablets of B12 however, seem to be reacting to something in them (I am sensitive to many foods) – my lips get very dry but seem to be feeling better and I wonder whether letting go of gluten has resolved issue although my legs are still numb but mind getting clearer… there appears to be a link between gluten and low B12 not showing in blood work… I now wonder whether I should press to get shots and if so, how many – frequency? my doctor is not at all concerned with B12 unless it goes below 200 range but my instincts are telling me that there is an issue there… your advise would be appreciated… thank you…
Joanne
Hello, I have been diagnosed with Vit B12 deficiency and now Vit D too. I have had four injections of B12 some weeks ago and am waiting for intrinsic blood tests to check for Pernicious Anemia? I am also now on Vit D.
My symptoms, fatigue, achy weak muscles and general feeling of poor health, but I also suffer vertigo which before the other symptoms came was thought to be Menieres Disease, although I wondering now whether the vertitgo and and all the other symptoms could be all part of the deficiencies, what are your thoughts?
If I am found to have Pernicious Anemia would it still be beneficial to B12 supplements too or will me body not absorb them?
Many thanks
Heidi Davies
Heidi Davies
Hi Dr R, I wrote last week and had a few additional questions. I don’t have any doctors that are very educated on b12 deficiencies so I appreciate your help so much.
I was the one whose Dr began treating her prior to doing a level so now I cannot be diagnosed. I am going to ask to see a neurologist as now I have weakness in my arms and legs, occasional tingling, and lots of muscle spasms and extreme bouts of lightheadedness. I have had 3 B12 injections over the course of the week, I felt better initially the first three days now the spasms have increased and I’m still very lightheaded, I’m a nurse and it’s getting difficult to work. I have read some people alluding to the B12 crash in my reading, I was wondering if you could explain this a little more. Could this be what I’m experiencing? Also, is it possible having this many shots so quickly could cause hypokemia which could explain the increase in muscle spasms? I’m experiencing these spasms pretty much everywhere, in my hands, arms, upper leg, and occasionally stomach and back. I’m just wondering if there is still hope that this is what this could be? I’m so scared its something more. I haven’t read of anyone with this many neuro symptoms only attributed to b12 deficiency. I also have very little appetite, food doesn’t taste as good as before.
Thank you so much.
Melissa
Melissa. Please consult with your primary care physician and/or neurologist for follow up on your symptoms. Clinical and laboratory evaluations are essential.
Dr. R
Hi i have just been diagnosed with b12 and recieved my first injection today on what will be a two week course followed by one onjection every three months. My systems were feeling low, tingling, lightheaded, pain in head, ears, cold sensation going up my legs and awful flushes. Is this normal? Ive found it difficult to go to work over last two weeks. My shakes and lightheadness was so bad. Ive just had bloods done today to see if my body can absorb b12. Any support advice would be great.
lissa bridge
Hi Lissa.
The B12 injections ought improve your symptoms. Once your on a maintenance routine you might want to consider an oral B12 based upon your lab results. Methylcobalamin is the active form of vitamin B12 and you should look for it in an oral supplement.
Dr. R
Having been very recently diagnosed, should I reduce exercise for a time? If so, how long? Doctor has me on injections (1 monthly for 10 months) and I’m taking a multivitamin. I also have an autoimmune disease. I started feeling better and picked up a second martial art, but it’s more intense than my other one and I’m wondering if I could be obstructing my own healing of the deficiency.
Anne
Hi Anne
B12 deficiency may be more difficult to detect in people who exercise regularly but that isn’t an issue with you. I would suggest consulting with your physician but typically as long as you are being treated and eating well, you should be okay. Pay close attention to fatigue or signs of slow recovery from your exercise. Back off the exercise if that should become an issue.
Dr. R
Hi Smitty
See my suggestions for GERD here
https://wholehealthchicago.com/2009/05/05/heartburn/?from=knowledge-base
Sometimes you can actually treat GERD by increasing stomach acid, using Betaine with every meal
Dr E
Hi Melissa
It is GREAT that your symptoms are improving and I think you’ll continue to improve. In our practice, we recheck levels just before the shot is to be administered
Dr E
Thank you Dr.E for your quick replies.
I’m going in next week to get my b12 rechecked. Do I need to stop taking my supplement to get an accurate reading? If so, how long before the blood work?
Also, do you have any articles or ideas about getting off ppi’s for LPR? I reduced from 60g of Dexilant to 30g. My throat is more agitated, but not horrible. I ordered the Critical Digestion, I’m taking DGL before meals and bed. I do not have typical GERD unless I take the 60g of Dexilant. Only then do I get heartburn/indigestion. I can’t help but think that low b12 and GERD are related and not sure how to go about fixing the problem. Unfortunately I do not live in your area, and the only suggestion from my doctor was to try a different ppi. My understanding is that low stomach acid might be the reason the LES doesn’t close properly, allowing acid to move to the throat. Not sure if this is true? Thanks again!
Smitty
Hello – I have gotten two B12 shots the last week for numbness/tingling/spasms in arms and lightheadedness. My dr didn’t do an initial level because it was before a holiday weekend, she just went ahead and gave me the shot, I did my lab work a day after the first shot which showed high levels >2000. I’ve been taking methyl cobalamin b12 as well and will be getting some serial shots the next few weeks. I have two questions…how long should I wait after shots to check my levels for it to be more accurate? And is it normal for my symptoms to now come and go? It’s been a week since I started treatment and some days my arms felt almost normal and other days the numbness/tingling/spasms come back along with the lightheadedness. My doctor is great but really just going by when I want to be given the shots so Im asking for two a week for a few weeks just based on some reading I’ve done along with oral supplementation but It’s really just a guess. I’m guessing it’s a good sign my symptoms are improving somewhat?? Thank you so much.
Melissa T.
Hi James
Tingling can occur at 255. Take B-12 either orally or by injection and get it above 700. Symptoms usually take weeks to resolve
Dr E
Hello- I started experiencing tingling sensation randomly (all over the body, but mostly extremities) for the last 3 weeks. I’ve met with my primary and a neurologists to rule out anything major, but after performing several tests, all roads seem to lead to B12 as the culprit. My sugar (113) was high after the holidays, so thought that may be a problem, but Endo doesn’t think so. I’ve since worked on diet and exercise.
My B12 is 255 (211-946 range)- just to confirm, can tingling symptom occur at 255? In the above article, it appears that symptoms can occur around 350. Also, if B12 is corrected, how long does it take to relieve tingling symptom?
Many Thanks!
James
James Adams
Hello Dr.M,
Thank you very much and appreciate your recommendation and as per your good advise, I consulted my physician and had my B12 and folate tested. The readings were as follows;
B12 – 568 pg/ml
Forlic Acid – 14.3Ng/ml
The doctor explained that these results were normal and there is no need for medication. However, I am still suffering from dizziness, tinnitus, poor concentration, off balance, weak muscle especially both my feet.
Can you please suggest what other tests should be done to diagnose my condition or should I do a retest elsewhere to determine my b12 and folate ?
Thank you again,
Lee
Hi Lee –
I would agree that your levels seem normal and at this point I would recommend looking for other causes of your symptoms. Has your primary care physician recommended any additional testing? These symptoms can arise from a variety of causes and should be fully investigated after taking your complete medical history and a physical examination. If you’re in the Chicago area, I or any of our physicians would be happy to see you for these concerns to help determine their cause. If you’re not in the area, please make certain that your primary care physician is aware of everything that’s going on with you and see if he or she would recommend that you meet with a neurologist. This would be the specialist I would suggest if you’re not getting any answers from preliminary testing.
I hope this helps and wish you the best while you investigate these issues.
-Dr M
cliffmaurer
Hi Smitty
Most available digestive enzymes are good products. I recommend Critical Digestion which is available in our apothecary. Take one capsule with a small meal, two with a large one
https://store.wholehealthchicago.com/shop/critical-digestion/
Dr E
My B12, is over 2000
For the past 4 years
But my symptoms are like deficiency, I got tested every 2 weeks then every 6 months.
Liver function is fine
Kidney function is fine
What it bothers me the most is my memory loss,and I can’t focus.
Is like the B12 is in my blood but my cells are not absorbing it.
Maria Castillo
Thank you Dr. E and Teresa! Nobody is taking me seriously because I am not fatigued or have any common low b12 symptoms. I am also very fit and have a very good diet already. I was told to eat more meat, but I already eat 130g at least a day.In Canada, under 133 is considered low and I actually was told that I’m not that low. So sad:(
I have been supplementing 5000mg of Methylcobalamin for over a month with no better effects on my stomach. In fact, I am convinced I already have low stomach acid and the Dexilant just makes my digestion worse. I tried reducing Dexilant from 60g to 30g this week and the throat problems returned (more mucus, hoarse voice, thorat clearing,sinus symptoms), but my stomach felt so much better.
Dr. E..Can I take digestive enzymes with my ppi? If so, which one do you recommend? I was told to try a pancreatic enzyme and digestive enzyme, but there are so many, I’m not sure which ones are safe to take with ppi’s?
Smitty
Hello Doctor, I had this ringing in my ear (tinnitus) accompanied with dizziness occurred last May 2015. I consulted a ENT specialist and had my blood tested plus audiometry and MRI. The results were all normal. I was prescribed with Tebonin Forte 120mg and Betaserc 24mg. I started to take these tablets since June 2015. However, it has only improved a little and the dizziness continues to hit me especially when I move / walk around. Fast forward till to-date, it seems after consuming the meds for more than 6-7 months it has not yield any improvement to treat my dizziness let alone the tinnitus.
I do my regular exercise 5 times a week with healthy diet control.
After reading this website, I am wondering if lack of B12 deficiency is the main cause ?
Your valuable advise is highly appreciated.
Thank you.
Lee
Hi Lee –
It’s very possible that B12 deficiency might contribute to or cause symptoms like yours. It would be a good idea to see if your B12 levels have been tested; if not, consult with your physician to see if you can get your B12 and folate tested. Given your symptoms, if they have persisted and if you also experienced any hearing loss, you may be exhibiting signs of something called Meniere’s Disease.
Hope this helps!
-Dr M
cliffmaurer
Hi Smitty
Ask your doctor to start B12 injections weekly and then retest after 6 weeks or so. A b12 of 95 is quite low
Dr E
Hi,
My vitamin b 12 level was found to be 195. physician suggested to take injections, i asked him for some capsule i have been given a 3 month course for one capsule daily, but i steel feel numbness in my palm what should i do should i take the injections
prateek
Hello – If your doctor has recommended injections and you’re still having symptoms after taking the capsules, you should speak with your physician about the injections as these would help raise your levels more quickly.
-Dr M
cliffmaurer
Hi..I have recently had blood work done and have a B12 level of 95.
I do not have any “typical” symptoms of low b12, and quite frankly feel good but I started getting LPR symptoms, not GERD. I am supplementing b12 but I’m wondering if these two are connected. My doctor has prescribed the ppi, dexilant which is helping my throat, but not my digestion. I really don’t want to take them, but they are working. Any thoughts?
Btw..I was not offered shots:( I am taking 5000g a day, sublingual (Natural Factor). Is that good enough?
Smitty
Smitty,
When I started supplementing with 5,000 methylcobalamin, I immediately felt the impact on my stomach. I had been on PPI meds too. You may also may have a low ferritin level too from low stomach acid from the ppis. Make sure you use methylcobalamin.
Teresa
First, thank you for answering our questions. Second, I am a 42 year old female with a B12<175 for two years. I am experiencing neurological symptoms. I have loss of coordination, depression, speech issues, lethargy, blurred vision, numbness in my extrmeteties and a host of other issues. I am having a difficult time at work, it is quite embarrassing. Does this ever go away or is this permanent neurological damage? Also, as a newly diagnosed patient what tests should I ask for to get to the cause of the B12 deficiency, none were offered.
Regina
Hi Regina – Provided that your symptoms are from a B12 deficiency and nothing else is going on, once you’re on proper treatment your symptoms should start to improve over a few months. Common tests associated with symptoms like yours include a blood count, complete metabolic panel, complete thyroid panel including thyroid antibodies, B12 and folate as well as a genetic mutation screening test called MTHFR. Sometimes variants in the MTHFR gene can prohibit you from utilizing B12 and folate, requiring a special type of B12 and/or folate supplement that is the “methylated” form. All that said, with your symptoms it’s important that lab testing follows from a discussion with your doctor about your symptoms and medical history to ensure that any additional testing is ordered based on your unique clinical picture. Best of luck to you; we hope this helps!
-Dr M
cliffmaurer
Hi Patricia
I would suggest you get a test for small intestinal bacterial overgrowth syndrome (SIBO). This tests your breath for excessive hydrogen and methane and your doctor can easily order this. If he is unaware of it, go to the Genova Lab website and insert ‘breath test’ in their search engine. It doesn’t sound like a B12 issue
Dr E
None of these testimonials seem to have my problem. I do have numbness in my fingers but I have a big problem with Gas–Flatulence, as soon as I eat something, the gas begins–no odor- it goes thru too fast. I also occasionally have systems of IBS. Will B-12 help? I can’t hardly deal with the Gas problems. Can’t socialize or eat out.
Patricia Wisniowski
B12 injections are not painful, if you get them in your top upper arm muscle. The nurse at my doctor’s office administers my B12 shots, and I barely feel them.
J Hoskins
I have all these symptoms but my blood test result for vitamin b12 is 1142!
Kamo
Hi Jenny
I think you’re not getting your B-12 level back to normal quickly enough if you’re getting an injection every 3 months and the symptom you’re experiencing is B-12 deficiency itself. Since the injections are painful, ask your doctor for a prescription for EligenB12 which allows you to get the B-12 levels up without any shots. Take one EligenB12 twice a day and get your level retested in 8-12 weeks
Hi Jaswal
Like Jenny, your doctor is moving too slowly on these deficiencies. For the D, get BioD Forte and take 4 drops daily for a month, then get retested. For the B-12, get the EligenB12 mentioned above or ask your doctor for weekly injections of B12 until your levels are better
Dr E
Hi,
I was suffering from dizziness,numbness,not able to concentrate,blurred vision.my doctor asked vit b12 and d3 tests.
B12 was 208
D3 was less than 10.
Doctor prescribed me
Remylen D , vitanova sachet once a week, D 500 tab.
I was feeling better after 15 days but suddenly after a week i am having same symptoms.please guide me what is the reason
Jaswal
I found i had low vitamin b12 march this year my levels was reading 133 im on injections every 3 months but the last couple of times of having the injection i am having really bad pains in left leg it starts in my lower leg & works it way up to my carf & knee this is happening every night only when i lie down with numbness going all through my leg is this normal
Jenny
Hi Nilesh
You need to get your B-12, folate and Vitamin D levels measured by your doctor
Dr E
Hi Dr M, really good and helpful forum.
Im a 33yr old male based in the UK and about 3 months ago I began to feel very tired and also anxious, with tingling in my hands and feet plus feeling spaced out or with a foggy detached feeling. I went to the doctors and had a full blood test for everything and came back I had very low B12 and also lack of vitamin D.
I have always thought of myself as a meat eater, im not vegetarian, but perhaps realised that I eat alot of pasta and pizza etc and probably dont have the best diet in terms of fruit and vegetables – which may make a difference? I begun a course of 4 B12 injections over 3 weeks and also vit D tablets, this seemed to help and felt fine for about the last 6 weeks, then suddenly at the beginning of the week it suddenly came over me again in a wave and felt very sick and very dizzy, more dizzy than I had felt previously a bit like an unsteady seasickness sensation, i put it down to lack of sleep and also perhaps some stress at work. I have then felt like this for the past week and am finding it difficult to sit at a desk and look at my computer as I feel this unstable feeling and am worried it will continue to effect me.
I have been for another blood test now to see how my B12 levels are now doing, the dr wasnt very empathetic or helpful and pretty much asked me ‘what should we do about it…’ (!) which didnt fill me with much confidence. I can deal more with the tiredness but its more the foggy feeling and dizziness that im more concerned about. Is this normal?? I realise perhaps my stomach isnt absorbing the B12 and maybe I may need regular injections?
I have bought over the counter b12 vitamins 2 days ago and started taking but no real effect yet and know maybe they are not strong enough. Do you have any thoughts on this or advice? I’ts just making me feel more anxious the more I think of it and also how its effecting my daily routine and not sure who to speak to about it.
Thanks for your time! S
SS
I had a similar experience to yours. It turned out that I had MTHFR c677tt, a genetic issue that effects b vitamin metabolism. It’s taken me about 1.5 years to get straightened out. I was iron deficient as well. Good luck to you. It took me years to figure all this out.
Teresa
Hi nilesh says,
I have got a epilepsy problem I take folvite tab 5 mg along with 1 tab of eptoin morning after breakfast & other 2 in the night after dinner. From past 3 months I have observed that after every 10 to 15 days time I face tremor problem with my legs, hands & neck as well. Actually my family doctor had advised me to take vitamin d3 tablets( once in a week for 3 months ) & b12 tablet 1 daily for 2 months. I have finished d3 course properly but took b12 tablet hardly 20 tablets in 3 months time. Now I face nerve problem back side of the neck as it was beginning. Now I am wondering is it a problem of parkinson? Or a deficiency problem of vitamin b12 or other vitamins? I have started exercise under the physiotherapist observation . I have cough also plz advise
Nilesh joshi
I have recently felt unwell and have experienced some vey strange symptoms. A tingling, stinging sensation in my tongue and mouth . My doctor arranged blood tests with a result of borderline b12 deficiency – reading 185 . The doctor suggested I return in a 4 weeks time. I guess to take another b12 test. Why do I have to wait. The symptoms are getting worse. Surely I should receive a b12 injection to alleviate my symptoms.
Alina Fletcher
Hi Alina – You should definitely let your doctor know that your symptoms are worsening. You may also want to consider a second opinion in this matter. If you’re in Chicago, Drs. Edelberg, Kelley, Donigan, Rubin and Maurer are available to you and can decide with you the best course of action. You may want to consider finding a doctor on the Academy for Advancement in Medicine at ACAM.org if you’re not close to our center.
Best wishes to you, Alina.
-Dr M
cliffmaurer
Hi
I am male 37 year old
Last 6 years have cholesterol patient
last year diagnose IST problem
that time deficiency D-3 lavel -8 and B-12lavel-115
now every three month complete blood screening.
My new blood test report are:-
D-3 lavel 45 nmol/L
B-12 Lavel 122 Pmol/I
ALT- 45 U/I
Alkine -135 IU/L
I use Rovista Tab 10mg once a week.
Bukhtiar
Hi Jaymin
How long did it take the shivering hands to go away and how long were you on treatment? I have the same situation as yours and have been on treatment for two weeks now but the shivering hands is still there…
Kofi Debrah
Hi Melody
The product EligenB12 is supposed to obviate these issues.
Dr E
Hi Kim
Yes, indeed,each individual needs vary. Every one of us is biochemically unique.
Dr E
My daughter age 23 has experienced tingling, abdominal distress, shortness of breath (sighing), ocd/depression/irritability, fatigue for years, off-and-on. I’ve advsied her to take B12 megadoses and the tingling and sighs go away–for a short time, as she always stops the B12 when she feels better. She eats very little meat, fish, or dairy, and only 1-2 eggs a day. (We do notice a remarkable, short-term, postive change in her personality if she eats a meal of steak or high-quality red meat, it’s as if she becomes another person!) Recently she was in such bad shape, couldn’t walk for more than 20 feet without stopping to rest, sighing heavily, irritable, tingling all over, very bad fatigue, and wanted to be left alone. Took her to the doctor (she was too faint to drive herself) to the doctor, who did a complete CBC. Everything was normal except the B12, which came back at 350. Doctor suggested 2000 mcg of B12 to bump her up to B12 level of 500, which is a good start. Also suggested a referral to a specialist.
However, the specialist just called and was very adamant that 350 is a perfectly good level, and no additional increase in B12 is needed, as he sees plenty of patients with levels in the 200-300 range who are fully functioning and require no supplementation.
This makes me wonder if each individual’s needs are different, i.e. absorbtion into red blood cells. Since birth my daughter has had all sorts of immune system problems and was in intensive care for 2 months as an infant because she was unable to digest proteins daughter. Likewise, she has an overactive immune system which reacts to many stimuli (i.e. she has had mono 2x, chicken pox 2x, has reactions to every vaccination, etc.).
Really, I am looking for confirmation that every person’s body is different and optimal health levels are variable, depending upon the individual.
kimmiedallen
right now i am taking vit d 50000ui one pill weekly for 12 weeks
melody tombs
i have had b-12 and vit d defieciency for years i took shots for a couple years then they stopped them i took again for about a year i started shots again about 6 months ago i took 3 shots in a month i broke out with a rash they did a patch test and told me i am allergic to nickel and cobalt. they told me cobalt is in b-12 supplements and shots so they quit the shots my b12 is still low i dont know what to do they are afraid to give me shots or pills because of the allergy to the cobalt do they make supplements without cobaltmy arms and hands and sometimes legs are numb and tingly so now they have me on nothing and the last one i had done i think was 219. any ideas what i can do to raise them i have stomach problems they called it gastric delayed emptying
melody tombs
Hi Melody Tombs,
Have you tried sublingual or liquid B12? You can buy them over the counter and they don’t contain any bad fillers, depending on the brand you buy. Plus they shouldn’t have nickel or colbalt in them.
You can get sublingual with active B12, Methylcobalamin, at 5,000mcg per dose. If you need something that high. And you can find liquid Methylcobalamin at 5000mcg a dose, or 1000mcg a dose, etc… Liquid would allow you to adjust your dosages easier than sublingual, but if you need a higher amount, liquid could get a bit expensive. Seeking Health has a good Active B12 sublingual. I use it and really like it. It has 4000mcg of Methylcobalamin and 1000mcg of Adenosylcobalamin. But you can buy sublinguals with Methylcobalamin if you want. It’s more common to find it with just Methylcobalamin. iherb dot com has a variety of liquid Methylcobalamin drops. They have one by California xtract which comes in 5000mcg per dose. Another one I like is by California Natural, but only has 1000mcg Methylcobalamin per dose. Both of these have no bad fillers or preservatives.So, I really like them. I would say subingual or liquid drops under the tongue are probably the next best thing as effectiveness than shots.
Michael (NW)
my b12 lavel 125
my other reports
uric acid high.
d-3 lavel 75.
bukhtiar
I am sure I am B12 deficient, having been a strict vegetarian for the past 27 years and experiencing a variety of symptoms over the past couple yrs… tingling on skin, muscle twitches (mainly eyelid), fatigue, palpitations, brain fog amongst other things. I had bloods taken; B12 was borderline, RBCs were fine, iron was ok and no antibody present that can inhibit B12 absorption. It was put down to anxiety disorder. I accepted that diagnosis until more recently, when I learnt that the B12 test generally used here in the UK is not very accurate as it doesn’t differentiate between active and inactive B12. Also, I understand that the threshold level in the UK is lower than in many other countries, where I would have been classed as deficient with my result anyway. So, about a month so ago, I started taking supplements. Shortly after starting them, I discovered that they were the cyano form which apparently is inferior to the methyl form. Also, up to that point, everything I read said you couldn’t OD on B12. So, I bought a mega high dose (2.5mg) supplement of sublingual methyl-B12, which I started taking every day to try to boost my levels. A couple days into use and my energy levels soared. However, two days on and I am now experiencing tingling on and off in different areas, especially hands, face and lower legs. Also, the eye twitch has returned. Now I am concerned that I may be affected by the high levels of B12. Yesterday, I read about neuropathy caused by excess B vitamins. I don’t know what to do for the best; my doctor just thinks I’m neurotic!
Maria HD
Hi Maria –
First of all, I would recommend getting tested for the genetic mutation of MTHFR; Methy Tetrahydrofolate Reductase. This will show whether or not you have a genetic predisposition of not being able to utilize cyanocobalamin. The results of this test may indicate that staying on methylcobalamin is the best choice. You may then wish to reconsider the dose; if you back of the the 2.5mg dose your symptoms will likely subside quickly. Sometimes jumping from too little B12 to a mega dose is simply too much for your system. Lower yet still effective doses can be found in products like Active B complex (https://store.wholehealthchicago.com/shop/active-b-complex/). Naturally, let your physician know what you’re taking, and always consider a second opinion if you feel like you’re not making progress. Hope this helps!
Best,
Dr M
cliffmaurer
Hi Niks
Although those vitamin levels were quite low, there are other causes of balance issues. If you live anywhere near a big city, there are specialists in this.
If not, a good ENT specialist might be able to help.
Also, try to get your B-12 up around 700-1000. Your doctor can order EligenB12, an oral B-12 that bypasses the need for injections
Dr E
Aged 30, I was diagnosed with Vitb12(160) and vitD(13)deficiency almost 2 years ago. I am having balance problem( feel unsteady all the time ) and suffering from fullness in ear even with minimum physical exertion. I had taken 6 b12 shots of methyl cobolomine immediately after diagnosis for 6 weeks followed by monthly once inection for 10 months along with remylin D tablets on n off. My recent b12 is 358 n still suffering from balance problem. What shall I do?
niks
Hi Olivia
Unilateral is a possibility. I would suggest getting your B-12 retested and make sure its well above 500. You might also consider a chiropractic evaluation to make sure there’s no issues with pinched or irritated nerves
Dr E
Hi I was wondering if symptoms of numbness with b12 deficiency can be experienced unilaterally ? I have had low b12 over 1 year now and have recently been experiencing for the last 2 days constant numbness /-altered Sensation in my LF and RF left hand only. I am 24 and female. I have been trying to improve my b12 with diet last 2-3 months. I am also an occupational therapist and will also be considering other causes of symptoms. Would be very greatful to hear your thoughts. Thank you. Olivia
Really appreciate your help.
Olivia
Please send me information to read abut the B 12 deficiency.
susan Adrien
I previously posted, my level was 216, I asked my doctor, now she’s saying im a hypochondriac. I started taking a store bought otc b12 vitamin and im starting to be less dizzy. My doctor says it’s a plecebo, swears 216 is perfectly fine and I could never have symptoms. She’s making me feel horrible about myself, and for asking.help?
Kim
Hi Kim –
I remember your post, and rest assured, we hear this kind of thing a lot, especially from patients coming from conventional docs. On one hand, she’s right; 216 is a level that will likely not result in actual disease, but you may still experience unpleasant symptoms (dizziness, headaches, low energy, etc.). Taking a little B12 is almost always safe, and if you feel you need a different opinion on your health care, please feel free to see one of our physicians or a like-minded doc in your area for which contact information can be found at the American College for the Advancement of Medicine’s website, ACAM.org.
Glad to hear that you’re feeling better.
Dr M
cliffmaurer
Hi, I wanted to know if I should be concerned with my health..
My doctor put me on iron about 2 months ago and I take them daily, my iron level was 8. And my D3 level was low as well so she put me on 5,000 D3.
I just had a follow up and my iron has actually dropped even though I’m taking my pills every day. I’ve maybe missed 2 or 3 days total.
My doctor (actually a nurse practitioner) keeps ordering blood test but nothing is changing.
Should I find a different doctor?
She told me she was concerned with my family history of leukemia.
Keep in mind that Im only 17 years old, and I’ve already had my gallbladder removed and spleen taken out..
I’m a nursing student at LSU and a professor told me to research immune deficiency syndromes that fit my symptoms, if you could help I’d appreciate it.
Hunter Nicole
Hi Rosie
B12 does not cause weight gain. Because it is involved in neurotransmitter production, low B12 can cuse depression and anxiety
Dr E
Does a b12 deficiency cause weight gain?? And how does it affect anxiety?
Rosie C
Hi Lisa
Your B12 of 124 is VERY VERY low and likely responsible for a lot of your symptoms. You need to continue your B-12 until your level is about 700. Your symptoms also sound like underactive thyroid and this should be tested as well
Dr E
How long does it take to replenish low B12 levels? I’ve read that the liver stores anywhere from 2-3 years worth of B12, is that true? If we are very low, how long will it take to restore those levels? I have the MTRR methlyation issue, and my Spectracell test showed I was low. And even after taking B12 for some time, I was still low. I’m assuming my body is using it up as much as I’m putting in. I have gone up to a higher dose and am feeling better. I will probably need to take B12 myself for all of my life due to the MTRR defect.
Michael (NW)
Hi I wanted to know if I’m lacking B12. I’ve been feeling really weak numbness in my face itchy skin muscle pain warm feeling all over my face also chest pain and lack of braethless.
marcy
Marcy. Start by getting some simple lab work to determine your B12 blood levels. Correlating symptoms with laboratory tests is the best place to begin.
Dr. R
Hi there iv been diagnosed with very low b12it’s 124. after years of being told that it’s down to my back problems and the medication I have to take, the symptoms I suffer are tried to the point I can’t wake up even tho iv sleep all night ( take now it’s 1.38 pm and I’m absolutely sick tried iv just woken up yet went to bed at 11.30 pm last night. I have foggy brain all the time. Iv cold hands and feet which I have pins and needles in. My fingers tips go numb. I suffer with depression and mood swings.weight gain I also get acid all the time. My muscles achieve all over but it’s my legs that are bad, anyway doctors found i have this and have just stated me on five injections every other day then going to do a blood test and see how I am I also have a vitamin d defisenty so been put on some tablets. I feel so down and just want to sleep people think I’m lazy and rude. This upsets me so much. I don’t know how much more I can take feeling like this. Lisa rolls how long will it take to start to notice the change.
My doctor said ok range is 184 to 900 is this right
Lisa
I am a 57 year old. I recently went to a specialist for an EMG. This is the 3rd Dr. I have gone to on the numbness from my knees down and now in all my fingers. 2 of them have said it was from diabetis but my A1-c is 6.2 and my sugar has never been over 111.I have been on gabapentin for 3 years and neurotin.This new Dr. is the only one that has mentioned B-12 deficiency.My balance is way off and I fall down 1-2 times a month. I also keep seeing things.
Gary Davis
Dennis=
Here’s the link to EligenB12
https://www.eligenb12.com/patient/
Dr E
Hi Dennis
I agree that 315 is low. I suggest you ask your doctor for a prescription for EligenB12 (see link) an oral B-12 that is as effective as getting injections. Just tell your doctor that you’d like to see if your symptoms improve with a B-12 about 750
Dr E
I have constant spells of lightheadedness along with some fatigue, I also have numbness and tingling in my legs and arms but always associated those with my various back issues, but now I wonder. I have been thru a battery of testing, Ears, Heart, brain MRI’s EEG’s the list is long.. Everything Normal except B12 is low last tested 2 days after an injection level came back at 315.. The dr says it with in the normal range.. I’m convinced this is my problem, I eat what i consider a normal health diet.. How do I get my dr to listen and what is the best way to up my level
Dennis
Hi Dennis,
Personally I wouldn’t recommend “EligenB12” only because it’s in the cheap form as cyanocobalamin. Some people can’t process this form into the methlyated form, the form the body uses. Actually there are 4 forms of B12, methylcobalamin, Adenosylcobalamin, Hydroxocobalamin and cyanocobalamin.
Depending on whether you have any methlyation issues such as MTRR, you may not be able to convert cyanocobalamin to the other active forms, or at least to methylcobalamin. This could be why you are low in B12. But there are other factors I’m sure that cause low B12. Some people have digestive issues that prevents absorption of B12.
Anyway, I used to get B shots which included cyanocobalamin. After a while I felt worse. I then had a test that showed I had HIGH levels of B12, yet other tests showed I had a HIGH need for B12. One of them being the Spectracell test. I high recommend this one. It doesn’t just look in your blood to see what you got floating around, anyone can have high B12 after getting a shot, but it will tell you what is getting into your cells, that’s what counts more for some nutrients. I had LOW B12 according to that test.
I started taking higher doses of methylcobalamin either orally or via shot, and I started feeling better. You can get over the counter methylcobalamin (Methly-B12) capsules, liquid drops (best absorbed) or sublingual (well absorbed). You can get them in 1000mcg up to 5000mcg or maybe somewhere inbetween.
I’d start low and work your way up as needed. You might even be able to find a lower dose of methly-b12 to start out with. Or, get the drops and you can make up your own dose.
Anyway, just thought I’d throw out my 2 cents worth.
Michael (NW)
Can you be deficit in b12 and not have anemia? Is 216 a normal level or b12?
Kim
Hi Kim – yes, patients can have low levels of B12 and have other symptoms (numbness and tingling, muscle pain, brain fog, balance problems, frequent colds and flus, just to name a few) without having anemia. 216 is very close to the low end of the “normal” range, but we usually prefer to see higher levels in healthy patients, usually above 500. I’d suggest talking with your primary care physician about this relatively low level of B12, especially if you suspect that you’re having symptoms associated with B12 deficiency.
Best,
Dr M
cliffmaurer
Hi Michael
Yours is a good question. I have not seen any clinical evidence of adrenal fatigue in any patients when boosting their B-12. The effect of B-12 is fairly gradual and not a stressor to our “fight or flight” response system
Dr E
Hi,
I have a high need for B12, in methylcobalamin form as I’m MTRR. But, I also have Adrenal Fatigue, and some people say that B12 stresses out their Adrenals and makes them worse. I haven’t seen that with myself and I’ve taken anywhere between 2000mcg and 5000mcg methylcobalamin.
Just wondering….we need B12 for energy, methylcobalamin, and adenosylcobalamin which apparently helps with energy in the cells? Anyway, I wonder if having MTRR most of my life and being low on usable B12, would that put strain on my Adrenals since they are having to work harder to provide energy in place of B12? Just wondering if you had any insight to that….
Thank you!
Michael (NW)
I’m 24 male. I had this major panic attack 3years back and it all started after that.I have this symptoms that i cant feel oxygen into my lungs and in my tissue..i can’t even yawn properly like it’s not kicking back. Now symptoms are getting worse i feel light head dizzy weak tired all the time can’t feel my spine properly. I am afraid that what’s gonna happen next. Please somebody suggest me what kind of doctor should i consult and what medicines should i get.
mickey
Hi Mickey – You should certainly consult your primary care physician about this. I would also recommend that you seek out a good psychotherapist who could help address the mind-body connection surrounding your panic attack and resulting health concerns. If you’re in the Chicago area and have access to our office, I would suggest taking a look at Dr. Meghan Roekle’s biography (https://wholehealthchicago.com/about/meghan-roekle/). Our Monthly Mindfulness Group (https://wholehealthchicago.com/2015/07/02/monthly-mindfulness-group/) would also be a good way to address some of the anxiety symptoms you report and help regain a connection between your mind and physical body. If you’re not in the Chicago area, your primary care physician should be able to help you connect with similar resources in your area. We wish you the very best as you address these concerns. -Dr M
cliffmaurer
Anyone being treated for anemia even if hemoglobin is low should first rule out a copper deficiency. A copper deficiency can mimic anemia. If iron supplements are given to someone who actually has an copper deficiency there may be severe side effects. So, ask your doctor to rule out a copper deficiency.
Sam Barbary
I didn’t start to see real improvement of my nerve symptoms until I started to supplement with both methyl b12 AND methylfolate. A lot of people have functional folate deficiency because of they cannot break down the synthetic folic acid that is put in a lot of our foods. Try avoiding folic acid in your diet (along with cyanocobalamin) and supplement with active forms of B12 and folate: methyl B12 and methylfolate. Start low on the methyl folate–400mcg and work your way up. See mthfr.net
Teresa Strong
Hello,
I was suffering b12 deficiency in 2013…it was treated and even blood levels were brot to 11.. Bt still i hv. Continuous complaints.of body ache tingling nerves nd memory loss or forgetfulness…mean while in january 2015 i had an abortion….nw my complaints are doubled and i.am conceived again 2 months …i worry wil this deficiency affects the baby? Do i to suffer life long?o
Rajeshwari
Hi,
I was deficient in B12, but it wasn’t until I started treating the functional folate deficiency that I started
Teresa Strong
Hi Cynthia
Get tested for MTHFR, folate and methylmalonic acid. Your functional issue may be due to your MTHFR status. As recommended by another reader, go to mthfr.net and read about this
Dr E
Hi Patricia
You should get tested for B-12, folate and methylmalonic acid if you’re concerned about B-12 deficiency. Even if your B-12 is borderline low, you should ask for B-12 injections or at least a prescription for EligenB12, tablets that raise B-12 in patients who have problems with absorption
Dr E
Dear Sir,
I have low iron and low haemoglobin, currently taking ferrous sulphate daily. I have had this problem most of my adult life off and on. I suffer various symptoms and my mother also has low B12 with symptoms and two of my three daughters also have low iron and B12 levels, and one of my daughters also has vitiligo, my sister too and my mother, also my daughter has psoriasis and joint pains, I at times also have joint pains, but our Gps who are at different practices, never seem to take this on board and only treat with pxs of ferrous sulphate. Can you advise. Many Thanks Patricia Manley
Patricia Manley
The MTHFR mutation can leave you with a functional B12 deficiency. Go to mthfr.net for more info.
Teresa
I was having shivering hands. I went to a neurosurgeon and he diagnosed that I have essential tremors. When I asked further, he said its something not researched yet, so google it. I don’t understand why is he a Doctor….
I was so worried, but after sometime while surfing on internet, I came to know that it was due to deficiency of vitamin D and B 12.
I underwent a treatment and I’m okay…
So, if someone talks about tremor, please tell him to check his vitamin levels.
Jaymin Brahmbhatt
I’m curious about functional levels of B12 (inside the cell, or “active” B12).
Many years ago, I had megaloblastic anemia. B12 shots seemed to fix it. I haven’t supplemented for years and a blood test came back with B12 levels in the 1400s. (Doctor said to stop supplementing, even though I wasn’t.) I got a Spectracell test done and found that I was functionally deficient in B12 (less than 14) inside the cells. I am very symptomatic, so I don’t know how to proceed.
Can you have a B12 deficiency, even though blood levels are high?
Cynthia
Hi, in 1997 I was diagnosed with M.S. but my B-12 was low. At the time I was eating healthy and exercising. Any way the Dr. sent me to a neroligist. The gave me a mri and said I had M.S.( I had no scaring in my brain and it took 45- 1 hour to find any scaring in my spine) So I was only treated for M.S. the steroids did nothing but make me gain weight. But my family Dr. gave me 2 B-12 injectios at the time. But once I was told it was M.S. they stopped the injections. a year later I changed Dr. and, my heart started acting up and that Dr. had me tested for b-12 and found I was almost depleated. So I was wondering if It was lack of B-12 and not M.S. I have not had an M.S. attack since 1997. Still no scaring in my brain.But I do know that B-12 damage does not heal right??
susan swim
Hi Jo
Your B-12 level at 703 is normal but may drift downward without the injections. I suggest sharing your concerns with your doctor saying you’d really prefer continuing them. If he/she is adamant, ask for an oral B-12 called EligenB12 which has a substance in it that makes it equivalent to B12 injections
Dr E
Thank you so much for your comments, I appreciate your response and I will do all that you recommend x
Jo Stott
Jo Stott,
Have you ever been tested for hyperparathyroidism? It can caused extreme fatigue and low vitamin D. Go to parathyroid.com for more info.
Teresa
Hi, I’d appreciate some advice please. I have been getting B12 injection every 8 weeks for roughly 7 years. I have recently felt unwell and my doctor did blood tests including Vitamin D and B12 and folate. The test came back that I am vitamjn D deficient (23) but it also said that my B12 levels are 703 and consequently my doctor wants to stop my shots as she feels I no longer need them. I’m so worried about this as I have Chronic-fatigue-syndrome and I dread to think how this will affect my health and well being. Can you please advise me if the doctor is right to do this, I’m at a total loss what to do.
Jo Stott
Hi Michelle
I agree with Teresa. Get her tested for MTHFR genetic variants
Dr E
New to this site. Hoping for help. 3yr old daughter has chronic constipation and is on Miralax, spooned shaped toe nails, has trouble fighting infections and has been hospitalized 3 times for high fever and bacterial infection of kidney from UTI. She is only 29.5lbs and almost 4yrs old. Very tiny compared to others. Neurological type movements that look like Steriotypical Movements. Labs show red blood cells slightly larger than normal, very high b12 and high folic acid. We give her a good multi vitamin but have not been consistant. Could she have functional b12 deficiency? Is this possible? It’s like these vitamins are just storing up in blood and not getting to where they should go. With her chronic tummy troubles I’m wondering if she cannot absorb nutrients properly? Any ideas welcome. Her doctors are no help and we are seeking another provider. Thank you.
Michelle
Michelle,
Have you looked into your daughter’s genetics? MTHFR mutations inhibit a person’s ability to break down synthetic forms of B vitamins folate, b12, and b6. Go to mthfr.net to learn more.
Teresa
Hi Joyce
Ask your doctor to locate EligenB-12 and medical food that will raise your B-12 without injections. Just take one pill daily
Dr E
I recently quit taking B12 injections (my insurance doesn’t cover) and I have started taking the sublingual liquid. I am gluten and lactose intolerant so getting what I need from my food is almost impossible. Just wondering how much I can safely take daily? I’m currently using 5000mcg and don’t seem to have the energy that I had with the injections.
Joyce
Hi Cindy
Generally low B-12 is linked with low potassium. I would have your doctor treat the low B-12, either with injections or the oral medical food Eligen. High potassium is commonly linked with kidney issues so his kidney function needs to be checked. Where Decrum’s fits in is anybody’s guess
Dr E
What would cause low B12 and high potassium levels? My husband suffers from Dercum’s Disease (genetic lymphatic disorder) that causes painful lipomas to constantly form across his torso and press on his nerves.
Cindycbl
Hi Lilly
Yes B-12 deficiency can cause both anxiety and depression
Hi Andy
I agree with your naturopath
Dr E
So has anyone here heard of being B12 Deficient even though your levels are consistently high? (1100+) A couple of years ago, docs discovered my iron and D were extremely low and I have to get infusions as over the counter remedies didn’t work. But my B12 level was over 1100 and still stays there even now. I don’t take vitamins and I am mostly vegetarian. I also don’t have any of the blood test markers for any liver problems, so a Naturopath I saw today suggested that she thinks I am actually not processing B12 properly and wants me to start eating a lot more meat and taking methylcobalamin B12. Does anyone else have any experience with this theory?
Andy
Could vit B12 deficiency cause anxiety? I eat a diet similar to vegans, but with a little meat and fish every once and a while. I haven’t had my levels tested because my doctor never takes any of my complaints seriously. I started taking very small doses of a B-complex in February to help with fatigue (I couldn’t handle much more than 1/8th of a capsule per day) but then a month and a half ago I stopped because I went out of town. I started to feel like my digestion was off, and that’s continued until today, when it’s even worse. But the last few weeks I’ve felt really severe anxiety. It’s something I’ve never had before, at least this strong, and it causes my muscles to tighten and me to want to shake because my heart feels like it’s beating too fast and strong. I’m trying to think of anything I can do to fix it, because it’s been weeks and I can hardly sleep and often feel too nervous to do things. I’ve ordered some supplements, but I thought I’d check since anxiety isn’t one of the symptoms listed here.
Lily
Hi Jennifer
Ask your doctor to prescribe Eligen-B12. This is a brand new medical food that can normalize B-12 levels without an injection.
Dr E
I see an endocrinologist every 3 months & have extensive blood work done. I have low blood sugar & a reactive blood sugar problem. Essentially, most people with low blood sugar eat more often to bring it up, with me depending on what I eat I will raise my level temporarily, feeling better, then I produce too much insulin & my blood sugar level is even lower than where I started. I am constantly exhausted. One thing that has come up, is my B-12 level is always low; I take 10 mg of Biotene daily, a multi-vitamin & I get vitamin B-12 shots monthly, it still registers low every doctor visit. My doctor advised I could easily take 2 shots a month, there was no worry with my levels low. A) I am considering a new doctor, I have seen this one since I began having problems 6 years ago with little progress B) what are some things I should be asking to help narrow down why it is low C) any other suggestions would be greatly appreciated
Jennifer
Hi Tammy
Although I like SpectraCell, it is not perfect. If you’ve been taking B-12 either orally or by injection, and your levels are good, then you need to have your doc consider an alternative diagnosis for your symptoms
Dr E
I have been taking b12 for a long time. I had several test done around b12 (blood serum, sMMA, IF, PA, etc). All these test have come back normal for months. I finally did a spectracell (testing at the cellular level). What would make an adult be deficient at the cellular level yet all the other test come back normal? I have started injections now. Though my symptoms were dizziness, confusion, and blance issues. Thanks!
Tammy
Hi lena
These symptoms do not sound like a consequence of B-12 deficiency. If you have seen both a rheumatologist and neurologist and all your tests are “negative,” you need to consider the possibility of fibromyalgia (which is notorious for ‘negative’ tests). If you go to our website’s “Knowledge Base”, you’ll find several articles on fibro, including a self-diagnosis questionnaire.
Dr E
I was diagnosed with severe B12 deficiency ( 36 pmol) in november 2015, after experiencing extreme migrating pain. since then i take b12 injections (intially 2 per week, now 1 per week).
after 9 months i still suffer from extereme body pain, and i dont see any improvemnt. i have seen reumatologist, neurologist, but all the doc are puzzeled about the pain i am experiencing.
i start to think that maybe my pain iwas not caused by b12 in the first place, or maybe it takes a long time to repaire the damage…
did any of you experience a simmilar problem?
lena
Dear Dr E,
This is Khim from Cambodia. Interesting to go through text and the discussions above. My wife who is 34, goes hungry and tired after eating 2 hours even with good food. Going to bed at 10 pm she always awakes (and can’t sleep anymore) at 2 am. Reading stuff on the Internet, I think my wife’s problems may related to B12 deficiency. I contacted a doctor and I was told that there is no blood test for B12 in the country. Shall I let her try to take B12?
Best
Ouk Lykhim
Dr.. E – What about HIGH levels of B12, as measured in blood test (along with high serum folate?) — does this actually signal a deficiency? Does this mean that B12 and folate are not getting into cells? If so, how to confirm? Also, is there another potential medical condition that could be causing these high levels?
Tania
Dorthy, have you tested for mthfr ? 60% of the population has a problem processing folic acid.
Jackie
Has anyone heard of Eligen B12? It’s a prescription oral tablet I recently read about that works as well as the IM B12 injection, even if you don’t have intrinsic factor. Apparently it came out a month or two ago
Charlotte
Charlotte. We speak about Eligen in this updated Health Tip on B12 Deficiency (second to last paragraph). Good luck. https://wholehealthchicago.com/2015/04/27/b12-deficiency-still-americas-1-missed-diagnosis/
Dr. R
Great, thank you! I’ll be sure to check it out.
Charlotte
Hi Sharon
Both your D and B-12 are low. I suggest BioD Forte, four drops daily (from health food store) and a new oral version of B-12 called Eligen. This requires a prescription but will raise B-12 without injections.
Dr E
I have been experiencing extreme fatigue and close thinking. I had my TSH and T4 checked and regular blood work. All normal. Sr said I just needed to exercise, but I was too tired. Went to a specialist, and I have low testosterone, although my TSH and T4 are normal my T3 was very low. Also had low vitamin D at 9. My B12 was 272…is that OK or do I need a supplement?
Sharon Brown
Dr. E,
I am finally getting B12 shots laced with glutathione. It’s hard finding a doctor to work with.
Teresa
Hi Dede
The body’s absorption of vitamin B-12 is very complex and there are several possible points of breakdown. They are totally unrelated to your intake of B-12, vegetarian or not. The commonest breakdown point occurs in your stomach which for reasons not known stops producing a substance called Intrinsic Factor, necessary for B-12 absorption. Why this occurs is not known but it does mean you do need B-12 injections for the rest of your life.
Dr E
I was diagnosed with a B12 deficiency in January 2014. My B12 was so low it didn’t even register. I had to get shots every day for 2 weeks, then once a week for 2 months and then once a month for the rest of my life. I was told my body just stopped processing it. Why after 40 years would that happen? I am not a vegetarian, as a matter of fact, we even eat liver on a regular basis. I lost feeling in the bottom of my feet and seen as it has now been over a year, I was told the chances are I will not get it back but the odd thing is, the numbness seems to be spreading. What else could be going on?
Dede
Have you investigated your genetics for MTHFR? You could have a mutation that keeps you from metabolizing B12 correctly, especially the cyanocobalamin form.
Ms Teresa A Strong
Hi Rick
The unexplained weight loss with all the other symptoms you’ve described PLUS basically normal blood tests suggest a different cause of your issues than B-12 deficiency. Ask your primary care doc to refer you to a neurologist who will do more sophisticated testing than that done during your routine annual exam
Dr E
Dorothy..Sally Pacholok’s books are great. Are you on any FB pages dealing with B12 Deficiency? What is your folate? Won’t be able to utilize the B12 as well without good ferritin, folate and potassium levels. With neuro involvement, you probably need injections. Does Pernicious Anemia/B12 Deficiency run in your family? All the best….
Bev
Since mid January I’ve just kind of fallen apart and thought for certain based on symptoms of b12 deficiency listed here that was the problem. Been on acid inhibitors (Prilosec) for years and have erosion of stomach lining. In last two months I’ve lost 25 lbs. have developed numbness and tingling in both feet and now starting in hands. If I run my fingers thru my hair my scalp tingles. Blood test came back today indicating b12 was mid range,iron was good, and all other related (anemia etc.) were ok. Have an appt with regular doctor in a month for yearly checkup. It’s like everything tingles. Now what?
Rick K
Hi Dorothy
1. Your symptoms sound suspiciously like mild hypothyroidism. You might try this self-test and discuss it with your doctor.
2. If you are indeed even slightly hypothyroid, this will interfere with B-12 absorption.
3. If your thyroid is completely normal, the symptoms are likely from your low ferritin
4. Overall, my guess is that you would improve with a small dose of natural thyroid, B-12 injections, and an iron rich diet
Dr E
Hello.
I ”self diagnosed” with b12 deficiency last June based on symptoms and help from Sally Pacholok’s book. I was very sick. I had had a hgb of 45 four yrs ago and I was diagnosed with cameron lesions so i thought all my ongoing symptoms since were iron related..my hgb is alright now but low ferritin of 10. I take iron but it never improves from this low number and is sometimes less than 10. I was told my b12 was fine..it was 140..i started lozenges on my own and instantly it helped last summer. I take vit d drops. iron and 2-3000subling methylcob. every day but i am so tired again /tinnitus/muscle pain and burning again/ nerve ending pain and some parasthesia and i have very cold, cold hands and feet. I also have a rdw that indicates macrocytic cells. I find when i take a subling lozenge now i have more nerve pain and joint pain and increased ringing in my ear within 20 mins or so/ I am now frustrated and confused by this and don’t know what to do. I would be so grateful for any explanation or advice. Thank-you in advance/ d.s.
DOROTHY SHEWAN
Hi Jenny
Yes, this is a reasonable test to get. However, why not ask your doc to start B-12 injections to get you in the upper range of normal?
Dr E
Dr E
Hi, I was wanting some advise. I have been suffering for 5 years of symptoms that sound like I have a deficiency in b12. My doctor tested me via a normal blood test.
My result should that my Vitamin B12 level is at 531 & in 2011 it was 457. My folate is 54.0 and my platelets are 177. Do u think I should request for a MMA as I have done some reasearch to suggest that it is more accurate. Thanking you Jenny.
Jenny
Hi Sam
The methylmalonic acid test is indeed a good one for early B-12 deficiency
Hi Amy
Just ask your doc to test B-12 and even methylmalonic acid. These should be covered by your insurance. The gummies do work to raise B-12
Dr E
Dr E
The test was for my mom. The doctor felt the methylmalonic test was not necessary. So I paid for the test out if pocket. It came back as a positive for low b-12 even though his B-12 test was low normal range.
Thank you for getting back to me.
Sam
sam
I read on a website that b12 deficiency can cause aversion to meat, but I’ve only seen that one place in a very long list of possible symptoms. I’m on Metformin and read recently that 30% of people on metformin have low b12. The longer I’ve been on it, the more averse I have felt to meat, even tomato-based products (spaghetti sauce, etc.). I’m sick of making dinner for my family and then not being able to eat anything but the noodles. (And 1/2 the time, I don’t cook cause I can’t stand to even look at certain foods) Any chance I’m low in b12? (PS. I have PCOS, not diabetes — but I was well on my way to diabetes before taking metformin — blood sugar problems, gaining weight, etc.
And do b12 gummies work as well as the chewable tablets?
Amy
The only reliable test gir b-12 deficiency is the methylmalonic acid test. Insist that your doctor order that test. Yet the problem may not actually be a b-12 deficiency due to poor diet. It could be low stomach acid which can cause malabsorbtion of vitamins and minerals. You need to get yo the bottom of whybthere is a b-12 deficiency. Then it could be the thyroid issue in that the thyroid can tell the stomach to produce less stomach acid. So have the thyroid checked. There could skdo be a chronic stomach infection of H. Pylori. Best advice though is to find a doctor certified in Functional Medicine.
Hope this helps.
Sam
sam
I’ve read that a good text for a b-12 deficiency is a methylmalonic acid test. High acid levels = low b-12. A homocysteine test is not a good choice for determining low b-12.
sam barbary
Hi d g
Just the one is needed, not both
Dr E
Dr E
I recieved a homocysteine serum result of 21 umol/L double the upper limit and High;, my creatinine urine was 5 mmol/L low but within range;
These were taken 14 hours after last taking my usual methyl B12 5mg sublingual vitamin,
I felt the tiredness symptoms, muscle stiffness, vision getting fuzzy,
After the test I took one and felt normal again within a minute,
I can feel the symptoms easily every two hours during work,
Is my body uping some metabolic process from consuming Mb12 supplements often and over time or is this indicative of factors I should look into seperately ( tests?)
#What can I infer from this about my levels, do I have reason to consider a conversion problem from these levels? Cble or f or d varaint 1? My methlymalonic acid urine and serum both tested in midrange despite no adenb12 suppl within the last two weeks.
d g
if i take mb12, do i also need a little cyano b12 for any other processes?
d g
My blood tests came back today, my vit b12 level is 147. The doctor told me to start vit b 12 shots next week to get my levels up. I have long suspected that something was up. My question is does a b12 deficiency cause an autoimmune disease? Or is it caused by already having one?in which case will the cause be apparent with a full blood workup.
Thanks
Tired and confused
Patricia
Milly
Unless extremely low OR you are taking a diuretic (water pill) that causes you to lose potassium, you generally don’t need medicine for this. Eating a banana or drinking a glass of orange juice daily generally corrects low potassium. That said, if there is no apparent reason why your potassium is low, you probably should get some kidney tests as there is a medical condition called “potassium losing nephropathy” that would need to be ruled out
Dr E
That is simply not correct. A B-12 of 120 is extremely low and definitely needs to be treated. With celiac, you probably should get injections monthly (you can really give them yourself) and maintain a level at about 700-800
Dr E
I have Celiac Disease and my B12 levels drop frequently. My previous doctor recommended injections when it dropped which was about every 3-4 months. I recently moved and had blood test which showed B12 at 120 and doctor said no treatment needed get tested in a year. Is this normal recommendation when the normal level is between 135-835?
Jill
My doctor has me on vit d 50,000 IU d2 1 capsule every 7 days I noticed on my health record the other day, that I also have hypokalemia. THE DOCTOR DIDN’T ORDER ANY TREATMENT.
milly
Teresa
I agree the sublingual B-12 generally works to boost B-12 levels BUT if there has been a documented B-12 deficiency and you’re using the sublinguals as your sole B-12 source, I strongly recommend having your B-12 levels periodically checked by your doctor
Dr E
Martina,
Just take sublingual methyl b12. These are as good as the shots. I take 5,000 mcg daily under my tongue, along with 3,000 methyl folate and 65mg elemental iron via Vitron C. After 6 months, am starting to feel really good!
Teresa
Hi is it ok to use sublingual spray while waiting on my injections.. I went to the doctor yesterday for been lightheaded he checked my ears they were full of wax so I had them syringed..
martina
Also my folic acid is 6.0 and im not anemic…
martina
I have b12 deficiency and peri menopause.. I have tingling in my fingertips and im lightheaded to..on December 12th 2014 my results were vitamin b12 deficiency and peri menopause..my b12 was 160..I’ve had 5 weekly injections next one is in 3 months.. April 8th.. and every 3 months after that.. why am I lightheaded and tingling fingertips.. menopause has the same symptoms… I have asked for monthly injections my doctor said no.. I had 5 injections and am well topped up.. every 3 months now.. can I take sublingual tablets they dissolve under the tongue.. can I still get my 3 monthly injections to.. is it okay if I buy herbs from a herbal shop for peri menopause and take centrum to.. I already take centrum multivitamin for women..
martina
Hi Martina. Please read Dr. Edelberg’s response to your prior comments. Thank you.
Dr. R
Hi Martina
If your B-12 was as low as 160 it may take awhile to reverse the nerve damage and to bring the B-12 level up. You should probably have your B-12 injections more frequently. With out patients, if a B-12 is 160, we give them weekly injections for 8 weeks, then re-measure the levels. Ideally, about 1,000 is a good level. You’ll probably need B-12 injections for the rest of your life, but once your level is good, then monthly injections should be enough
Dr E
I have b12 deficiency and peri menopause.. I have tingling in my fingertips and im lightheaded to..on December 12th 2014 my results were vitamin b12 deficiency and peri menopause..my b12 was 160..I’ve had 5 weekly injections next one is in 3 months.. April 8th.. and every 3 months after that.. why am I lightheaded and tingling fingertips.. menopause has the same symptoms…
martina
Hi Jennifer
It works just as well. Just grab a roll of tummy fat and inject into it
Dr E
To Jennifer…..there are many on the PA/B12D board that inject subcutaneously into their belly fat….with good results…..it is an individual choice….some prefer intramuscular, others subcutaneous….needle size and gauge will be dictated by individual and how much injected and where injected….
B
I have a question….is the b12 still affective if you inject it on your stomach instead of your butt?
Jennifer
To Erzsebet,
Dr. E sounds spot on…….also, what I have learned from reading Sally Pacholok’s book on B12 Deficiency and the PA/B12D board, is that pregnancy can drain you of nutrients, including B12, especially if you have a tendency to be low, or have the SNPs that cause you to not recycle it well. The life cycle of red blood cells is about 120 days, so 3 1/2 months out would make sense for you to start experiencing symptoms….are you breastfeeding? Baby would not be getting enough B12 if you are deficient…..and your hormones could be off as well…..see Hypothyroid MOM….not unusual to get diagnosed with hypothyroidism after pregnancy. I was able to stop thyroid meds after getting replete on B12…..sometimes low B12 can throw off hormones….congratulations on your sweet baby!!!!
Beverly
Hi Erzsebet
You likely have a problem absorbing the B-12 in your diet so that no matter how much you eat (or swallow as pills), it is just not getting into your bloodstream. Injections of B-12 will solve this
Dr E
Dr E
I have just undergone blood tests to check for a B12 deficiency as I seem to have most of the symptoms. My question however is how could I have possibly become B12 deficient ? I eat a form of meat with every night time meal, mostly chicken, I have a lot of yoghurt and a fair bit of milk. I had a baby 4 months ago, and my symptoms started to show 2 weeks ago. I’m hoping it is b12 as the other options could be very severe but I don’t seem to fit the criteria for why I’d have low levels.
Erzsebet
B12 deficiencies mimic many other health problems. Please have your thyroid (all levels not just TSH) and a complete CBC panel to rule out anemia. Your body is most likely off hormonally due to your recent childbirth. Good luck!
Lizzy
[…] Six Commonly Missed Diagnoses: B12 Deficiency […]
Vitamin B12: I Wish I’d Known | Cindy Roy
My grand-grandfather said eat liver of goat to avoid physical weakness, vitamins deficiency.
zouhir
I have been having tingling in fingers, hands and feet for months. I have also been put on prozac due to anxiety and depression. I checked back on blood tests seeing b12 at 248 a couple years ago and was told to take sublingual b12 methylcobalalmin 5000 mg but I am still low and so is my thyroid. These sublingual pills do not seem to help me and my neurologist suggested this test. Still waiting for him to discuss my results but his office manager told me they were low.
sharon baker
Hi Sharon, on the Pernicious Anemia/B12 Deficiency FB page, there is some thought that thyroid and B12 issues may go hand in hand for potentially several different reasons. Some of the admins over there can probably explain it better. Too many are not helped with the oral/SL and need frequent injections. And serum values are not that reliable. A good doc is going to treat to symptoms. If your folate/ferritin/potassium levels are off kilter, it will also affect how well you use any B12…..best of luck to you…
B
I was b12 deficient 109.Giving loading dose feel no better numb feet shooting pains in legs.
Iris Storey
I just need to add, I am amazed by some of the comment above about using hydroxy injections and folic acid, which are inactive forms of B vitamins which not everybody is able to convert into active forms and potentially cause methylation block. They should also stay away from CyanoB12 like the plague.
People should be taking active forms, methylcobalamin and adenosylcobalamin and methylfolate/metafolin (much superior form of folate than folic acid).
If people want an alternative to injections as well there are excellent transdermal products out of Australia from B12oils. Apparently some compounding pharmacies are already trying to copy this, so something similar may already be available in NA somewhere.
Kerbox
One serious key factor missed from this article is MTHFR mutations, after suffering psychosis in my late teens then developing myalgic encephalomyelitis/chronic fatigue syndrome in my early 20’s, which I have now had for over 10 years I finally learnt last month, after all this I am Homozygous. Now at the moment I am taking a transdermal Adenosyl/Methyl once a day, to slowly build my stores back up, along with 200mg B2, a B complex once every two days, 500mcg methyfolate, 4000iu Vit D, 200mg CoQ10 and slowly getting my life back. The transdermal B12 is obviously significant though, if I am too active, get my usual burnt/washed out and cognitive symptoms taking it is like windex on my brain.
As others have pointed out as well standard B12 blood test is absolutely useless in some cases, deficiency can exist in the tissues and also in the cerebrospinal fluid (CSF) independent of blood levels and tissue levels. You can also have deficiency in either or both active forms of B12, methylcobalamin and adenosylcobalamin, in either a general body deficiency of one of the other, or a central nervous system/cerebral spinal fluid deficiency.
Kerbox
Hi Kerbox,
So glad you found some answers. In response to the hyroxo, I did Nutrahacker and several other 23andme interpretations and because of my SNPs, they do recommend staying away from methyl donors. That being said, I did try one of the methyl patches and could not tolerate it. I also could not tolerate methylfolate for very long. Everybody is different. Cyano injections did absolutely nothing for me, but I probably just did not get enough of it close enough together for long enough. There are some on the PA/B12D FB page that can only tolerate cyano…go figure…..and there are those that cannot tolerate any of the methyl donors, even though they are supposed to be able to do so. There are even some who have an allergic reaction to the cobalt and need to be slowly desensitized by docs who know what they are doing. Hope you continue to make a rapid recovery….
B
Nascobal was developed to come up with an alternative to injections and it does seem to work well but apparently quite expensive. Many people do feel “better” using injections and the Canadian product is just fine
Dr E
So the Dr office has been out of injectable B12 for about 8 weeks. I went in 3 weeks ago and complained that my symptom seemed to be returning. So he gave me a script for Nascobal a nasel spray 500mcg once a week. He also did blood work and said B-12 was normal now so I asked why my symptons were returning so he setup an appointment with a neurologist. Had a bunch of test yesterday and will find out results next Tuesday. One question I have is with the Nascobal, it seems to do nothing for me just like all other forms of B-12 except for injectable, and in the instructions it states “Nascobal® (Cyanocobalamin, USP) Nasal Spray is indicated for the maintenance of normal hematologic status in pernicious anemia patients who are in remission following intramuscular vitamin B12 therapy and who have no nervous system involvement.” So what is the deal with the no nervous system involvement when clearly I do have issues. Why is it not for those symptoms. Does anyone know? Also considering ordering injectable B-12 from Canada Pharmacy which carries B-12 from Sandoz a leading global supplier of generic pharmaceuticals. Which seems to have 3 plants in the US except none of them produce injectables. I can get 1000mcg 10ml bottle for $24.00 US. Any comments?
Thanks everyone
Rodney
Pls go to pernicious anemia/b12 deficiency FB page to join….for any neuro involvement….every other day injections until symptoms resolve…Hydroxoco lasts three times as long as cyano and gets the job done faster…need folic acid, good iron and potassium to use b12 when making new cells….best of luck…
Neb
So…. What did u find out?
Donna
I went into the doctor because about a month ago I began having tingling sensations in my legs, mainly from the knee to ankle, my scalp itches, and my hair is thin and dry. My blood work came back at 200 for B12. My doctor suspects that a borderline low RBC count (3.78) and T3 count (1.9) may all be related. She has me on weekly injections. I am healing from being very underweight (BMI 16.5) and an over excersizing/eating disorder. I have added more foods containing B12 to my diet and began a daily probiotic. How long until my symptoms improve? Should I try to get more injections every week? What can I do to speed the process up?
Lizzy
Kate
If you have actual celiac disease, its responsible for everything–the weight loss, low low B-12 and the adrenal fatigue. Going 100% gluten free plus taking vitamin supplements (B-12 by injection) will slowly improve adrenal function. You will need Deplin (methylfolate) to compensate for the MTHFR. Taking some adrenal support supplements (AdrenPlus, for example) will speed the healing process
Dr E
Thank-you very much for your advice Dr. Edelberg. It is very helpful! Started on B-12 shots. Thought I had everything wheat-free until I found 3 kinds of wheat in my shampoo…amazing!
Kate
Can severe unintentional weight loss affect b vitamin levels? I had severe stomach pain for 8 months and lost 22 pounds. Went from 108 to 86 lbs! Bedridden for 3 months. Diagnosed with severe Adrenal Fatigue Syndrome. Also diagnosed with Celiac and very low Vit B levels. Also diagnosed with MTHFR C677T and MTHFR A1298C polymorphisms. I am very confused! Is adrenal fatigue causing all my debilitating symptoms or is it lack of vitamin bs, or both? Thank-you!
Kate Dusch
A B-12 of 302 is NOT NORMAL. Using either oral supplements or B-12 injections, get theB-12 up to 900 then re-evaluate the situation
Dr E
High MCV,MCH and homocysteine(13)…rest of the cbc is okay..hematocrit good, MMA normal, folate normal, serum b12 302.
This sounds like macrocytosis but b12 and folate are normal! Any idea?
Mario
I had all those symptoms for years and finally got a true diagnosis through genetic testing. Check out mthfr.net and other sites to learn more about hereditary methylation disorders. Get your genetic raw data through 23.com for $99 and run that data through genetic genie to get real answers about your body’s chemistry. Promethease.com also has a downloadable app that gives a comprehensive outline of your genetic traits
Teresa
Great article! Last week I learned I was b-12 deficient and started on weekly b-12 injections. I had the tingling and numbness symptoms so my doctor ordered other tests (dreaded MRI) but I am optimistic the b-12 is the cause. I see my doctor in a couple weeks for follow up. Curious if you’ve heard of runners flushing b-12 out of system because of all the water taken in throughout the day. Just wondering how much is too much water. I am not a vegetarian and don’t have conditions that are associated with the deficiency. Now off to find your Vitamin D article since I am deficient in that too.
Lisa
I just got diagnosed with homozygous MTHFR C677T that prevents me from converting non-methyl versions of b12, b6, and folic acid into useable forms. It stumped my doctprs for years as I got sicker and sicker, because I had high folic acid and b12 on blood tests, yet still had megoblastic anemia.
Teresa
Rodney,
You may be undertreated. Some people with B12 Deficiencies need alternate day dosing until any neuro symptoms resolve, then on to less frequent doses after that. It is difficult to find medical professionals who are aware of this – too much of a learning curve for them. Please sign on to the Pernicious Anemia/B12 Deficiency FB page. You may be low in folate and potassium as well….maybe even iron, although sort of rare for a male. We need all of these and more to make new red blood cells, new DNA, etc. The admins may be able to help answer some of your questions….also, you might want to find the Second Edition of _Could It Be B12: and epidemic of misdiagnosis_ by Sally Pacholok, RN and her husband……all the best…..
Beverly
Hi Rodney
Some people do respond as you to B-12 injections. My suggestion is simply to take the shots every two weeks. Some doctors allow self administration. Ask your doctor about it
Dr E
I have a B12 Deficiency, I get a shot every month and for the first couple of weeks I feel great and then its like I’m on a roller coaster, mood swings, no desire, laziness, just up and down one day I feel sort of ok the next I feel fogged. Could my body not be storing it?
Rodney
Thank for this info….only time ever tested was when I requested it several years ago, age 56, after a lifetime of struggling with depression and fatigue, miscarriage, infertility, stillbirth, childlessness, etc. I was supplementing, but thought B12 Deficiency could not be reason for symptoms, because I tested HIGH, over 1500. (Did have cyano injections a few times in the past without much relief). Several weeks later, another test at the lymphocyte level showed Deficient, so whatever was in serum was not getting into my cells. Several years later I found Hydroxocobalamin after listening to Dr. Rich Van Konynenberg’s 2011 CFS/ME video series he did in Sweden. I ordered some Hydrox, switched my folate/folic acid around, and have never looked back. I progressed onto injections with even more improvement in symptoms. Someone my age who has used her hands all her life for jobs – typing, patient care, etc. – should never have experienced as much improvement in finger dexterity/typing speed as I did, but I did. Conclusion – I was deficient, and had been for a long, long time. All the medical professionals I had consulted had missed it, all my health care supervisors and co-workers had missed it. My symptoms were classic. Mother probably deficient as well. Lots of psych diagnoses in the family that were ineffectively treated.
Beverly
Did you have nose bleeds at all with your other symptoms?
gailbech
My dr prescribed B12 injections but I’ve been experiencing severe flushing and want to discontinue. Is there another form of the vitamin that I can tolerate, or is there a way to counteract the flushes?
Lisa
Vegetarians frequently have very low levels of both B-12 and D. Try to get both measured. Ideally B-12 should be 600 or higher, D 40 or higher. If B-12 is less process with a series of B-12 injections
Dr. E
The likely reason for this phenomenon can be discovered in the older name for Vitamin B-12, once known as “maturation factor.” As you know, blood is made in your bone marrow. With insufficient B-12, the young blood cells growing there reach an intermediate stage, unable to mature into healthy adult red blood cells. When B-12 is administered, all these cells start maturing at once, and very quickly. A lot of energy in the marrow is expended at this, so much in fact that you can feel temporarily exhausted by the maturation process
Dr E
I have been diagnosed with b12 deficiency. I was given b12 shots and they made me feel EXTREME fatigue afterwards for a few days. I recently found that i can tolerate sublingual b12 (1000 mcg).
I have also recently tried sublingual B complex in liquid form and I get that same exhausted effect that got from the shots.
My question is why? shouldn’t i feel more energetic instead of exhausted?
michelle mazur
This is the best newsletter! How much B12 should be taken? Does it have to be in balance with other B Vitamins? Thanks.
Beve
Hi,
I’d like to be referred to a geriatric nutritional medicine doctor who practices either in Santa Fe, or Albuquerque, New Mexico, where I reside.
Thanks!
Kasandra Clemente
We don’t have any “personal” contacts in New Mexico. You might try acam.org and search for a member doctor in your area. Good luck Kasandra.
Dr. R
Vegans do not have low b12…that is a myth. Also, meat is not a good source of b12. The issue with b12 is the body’s intrinsic factor and flora balance. The body can manufacture b12 if these 2 components are in place. Also, soil quality is important, as b12 is manufactured in the soil by bacteria as well. When u cook meat, b vitamins are destroyed, as is vit c and other vit/minerals.
So, dont eat meat to get b12. Check how ur body is utilizing b12 via the uMMa test, as serum levels are not a good indicator. Work on ur diet (ditch the animal products and base ur diet on raw fruits, veg, small amounts of nuts/seeds, perhaps small amounts of starch/beans) and u will not need gobs of supplements to undue what the SAD diet has done to our society. We are the only animals that eat cooked, processed, damaged foods that are not specific to our species (primates). Eat according to our species, and u’ll notice most of ur health issues disappear
If u need b12 while ur body heals, then consider a sublingual methyl form. U dont want to use injections, for u dont want to induce damage to the skin with the needle (sending a stress response, among other things). The methyl form is best absorbed
Hope this helps!
The Holistic Health Investigator
HHI, I so appreciate your much needed voice of reason. It is obvious to anyone willing to face it that humans are not carnivores (frugivores, apparently) and so it only makes sense that the B-12/meat connection is a lie, perpetuated by those who stand to profit by it. Thank you.
Debrajmac
Holistic investigator, you need to investigate further, Yes, humans can manufacture B12 but we cannot use it. The B12 that we manufacture is processed in the large bowel and excreted from our body along with our faeces.
B12 is found only in meat, dairy products and some fish. It is not found in any plant based diet. The form of B12 found in plants is inactive B12 or B12 analogues. B12 analogues will block B12 receptors with the end result being B12 deficiency.
A published B12 researcher.
Pat Kornic
[…] meats, it is concerning for me. I read this fantastic article that morning about B12, here is the article. You see, a B12 deficiency effects the nervous system and digestive track. Given his Sensory […]
Weightless Wednesday: Food Allergies is No Joke - Healthy Jasmine
This is good to known! My Mom is 82, her Dr has her use the patch. I had knee replacement surgery 2002, My Dr had me take B-12 pill’s each day for my knee, for the rest of my life. But didn’t tell me how many. I have all all of these symtons, I thought it was from my arthritis. I have cronic pain. & fibramyalga, & type 2 diabetes. Thank you
Bonnie Peach
Im vegan and my serum b12 levels were around 2000! Im not taking any supplements….does this mean that im not utilizing b12?
bee
You diagnosed my B12 deficiency years ago during a routine physical exam. (Thank you so much for being so thorough with this vegan.) I recently converted to oral Methylcobalamin supplements (as opposed to sublingual cyanocobalamin for years, with contintued numbness/tingling) and am impressed with how quickly my symptoms disappeared. Methyl B12 seems to have made quite a difference.
lindsay
In addition, nutritional yeast is a good source of B12.
angie
My neurologist and Internist don’t take my numbness, tingling and poor moter functions seriously.
I am tepted to handle the B12 situation on my own
Elfi Locke
Please do. I inject twice a week with B12 in my tummy. I had megablastic anaemia, not diagnosed here but abroad where my doctor is. Have a look at the Mayo clinic, they have plenty of info on there. Pills are really no good if you are very low.
Linda Thipthorp
Serum blood labs are unreliable in regards to B12….the only reliable test is the uMMa, which shows how/if the body is utilizing B12. Does ur office do this test?
bee
Hi Elfie, you can always try to B12 patches to begin with. They are very good. If they don’t suit then try another form, they also do nuggets. Blood tests for B12 are unreliable. You cannot overdose on it..
Linda