When Your Thyroid Medication Isn’t Working

Let’s start with two thyroid facts: 

The diagnosis of hypothyroidism (low levels of thyroid hormone) is missed by most physicians. Patients arrive with obvious symptoms of hypothyroidism every doctor learned in medical school, among them sensitivity to cold, weight gain, dry skin, fatigue, and constipation. The doctor listens, sometimes attentively, and then orders a TSH (thyroid stimulating hormone) blood test. TSH does not come from the thyroid itself, but rather from the pituitary, a Wizard of Oz sort of gland that controls your thyroid from behind its curtain.

Understand that a high TSH test result indicates low thyroid function. Think of your pituitary churning out the hormone in an attempt to stimulate your thyroid. If your TSH is within normal range (currently 1.0 to 5.0), you’re told that low thyroid is not a problem and you’re sent on your (less than) merry way, tired, cold, sluggish, and depressed, thinking “I thought it was my thyroid.”

What your doctor should be measuring are your actual thyroid hormones, T3 and T4, and testing you for the common thyroid autoimmune disease called Hashimoto’s thyroiditis. She also should know that many endocrinologists now believe any TSH test result above 2.5 should be treated as an indicator of low thyroid. Probably 20% to 30% of adults drag around with their TSH higher than 2.5.

 

On the opposite end, patients themselves over diagnose hypothyroidism. If you go online and start reading websites devoted to the thyroid gland and underactive thyroid, someone somewhere has attributed every possible discomfort the human body can experience to low thyroid.

Take being overweight as an example. Let’s face it: a single daily thyroid tablet for weight loss would be a whole lot easier than eating healthfully and boarding your elliptical. It’s human nature to pray that the villain of your middle-age spread is an underactive thyroid rather than an overactive fork.

Early days
The first physician to point out that hypothyroidism was likely being badly underdiagnosed by doctors was Broda Otto Barnes, MD, a Rush Medical College-trained physician and professor at the University of Illinois College of Medicine. Noting the consistently low body temperatures of low-thyroid patients, he standardized a basal body temperature self-test you can find here. Barnes drew the line at 97.8 (recently changed to 97.6) and felt that any temperature lower than that in a person who also had symptoms of low thyroid merited a trial of thyroid hormone treatment.

The Barnes self-test never caught on with a majority of physicians, mainly because TSH was discovered at about the same time and seemed more scientific. These days, an increasing number of you bring your basal temperatures to your doctors as evidence of self-diagnosed hypothyroid status. It’s likely your doctor hasn’t a clue about Barnes and his work, but to reassure you your doc may actually order a TSH test. If it comes back normal (below 5.0), you’ll hear “Your thyroid’s fine,” but in your heart you know better.

With perseverance, you’ll eventually locate a physician to write a thyroid prescription based on your symptoms and basal temperatures.

Ineffective thyroid replacement: what next?
But what happens when you take the prescribed thyroid replacement and nothing happens? Your hopes are dashed. You’re still cold, tired, and, worse than anything, you haven’t lost an ounce. What went wrong? Don’t give up! There are several avenues for consideration:

  1. Your dose isn’t high enough. A definite possibility, but don’t increase it on your own. Dose adjustment is not DIY healthcare. Let your doctor adjust your dose by listening to your symptoms and tracking the results of a full thyroid panel (TSH, T3, T4). Some patients feel best being a scoatch under hyperthyroid (a scoatch is slightly less than a smidgen), but going around in a self-induced overactive thyroid state (called factitious hyperthyroidism) is simply unhealthy.
  1. The thyroid replacement product isn’t right for you. Conventional physicians have been brainwashed to prescribe Synthroid/Levoxyl, a synthetic T4 that replaced Armour’s dried (desiccated) pig (porcine) thyroid in the 1960s (older Chicagoans still remember Armour as a meat-packing company). T4 triggers cells outside the thyroid to make T3, the active form of the hormone. Some people have better T4-to-T3 conversion systems than others. The original Armour thyroid was a blend of T4 and T3 and very similar to human thyroid. Several years ago, Armour was acquired by a Big Pharma company that changed the manufacturing process and bollixed it up.

The name of the best natural thyroid is easy to remember: Nature-Throid. Other excellent thyroids are WP Thyroid and ERFA. If your doctor adamantly refuses your request for NatureThroid, consider Liotrix, a blend of synthetic T4 and T3 in the same ratios as NatureThroid. Or find a different doctor.

  1. You may have an issue with T4 altogether and may need pure T3 (liothyronine, Cytomel) added to your T4 as a separate prescription. Since T3 is much more potent than T4, your initial dose will likely be quite small, on the order of 5 mcg (mcg stands for micrograms, one millionth of a gram or one thousandth of a milligram). If you’re prescribed Cytomel, never ever self-treat (“Oh, I’m feeling so fat today, I’ll just take a few extra Cytomel”). Yikes! Too much Cytomel can trigger very unpleasant side effects and potentially dangerous heart arrhythmias.
  1. You may be taking Cytomel (T3), but feel an afternoon crash. This is because T3 has a short half life and disappears quickly from the body. You might feel better if you spread your dose throughout the day–e.g., 5 micrograms three times daily. There are also capsules of slow-release T3 available, but you’d need to get these from a compounding pharmacist. It can be expensive and is rarely covered by insurance.
  1. You may have forgotten about your adrenal glands. Your thyroid and adrenals are both pituitary-controlled, stress-responding glands. When you’re under chronic stress, both can become fatigued. If you start treating for low thyroid, your increasing metabolism may place an extra burden on your adrenals. Symptoms of adrenal fatigue can mimic hypothyroidism. Take an adrenal support formula when starting thyroid hormone replacement. If you still feel thyroid symptoms and your lab tests are good, have your doctor order an adrenal test, which measures salivary cortisol throughout a single day.
  1. You may have overlooked selenium. It’s only recently been shown that diets low in selenium can induce hypothyroidism. You needn’t add another supplement for this. Just eat some selenium-rich foods—they’re all quite tasty. This first list is for meat and fish eaters, the second for vegetarians (pescetarians, please scan both).
  1. Familiarize yourself with Janie Bowthorpe’s website Stop The Thyroid Madness. The more I read her, the more I’m convinced she knows more about thyroid than 99% of physicians practicing in the US.
  1. Don’t increase your thyroid dose without professional supervision. I’m well aware of Denis Wilson, MD’s, work and his “Wilson’s Temperature Syndrome,” which is essentially Broda Otto Barnes revisited along with time-release Cytomel in place of desiccated porcine thyroid. But Cytomel is simply too powerful for you to play with on your own.
  1. Remember that fatigue is one of the most common problems people bring to their primary care physicians. There are dozens of causes of fatigue. If your pursuit of hypothyroidism doesn’t pan out, don’t give up. Keep researching, at our WHC blog and elsewhere.

Be well,
David Edelberg, MD

Tagged with: , , , , , ,
22 comments on “When Your Thyroid Medication Isn’t Working
  1. A says:

    WHAT do you think about *NP Thyroid Brand , made by Acella

  2. Dr E says:

    It is excellent

  3. Nelson says:

    Eureka! You diagnosed me with sub clinical hypothyroidism from my basal temperature in 2010. Through the years, my energy has returned with a health coach, improved diet and gluten free options. Grains are not my friend at all. I’ve relocated since my treatment where my primary care doctor informed me that my health was perfect, but the gas, constipation and bloating remain a mystery until today…
    I will be requesting a SIBO next year

  4. Pawan says:

    Excellent Article Dr. E.
    I have a question. My basal temperature is continuously low when I take it first thing in the morning around – 97.1. But my blood report for thyroid is normal – TSH, T3, T4 and hashimoto antibodies under normal range.
    But have symptoms of low thyroid specially low energy and sensitivity to cold.
    Does the NatraBio, Thyroid Support with real thyroid can help.
    Does low thyroid can cause lowT.

    Appreciate a reply.

    Thanks

  5. Dr E says:

    Hi Pawan
    Quite a few doctors (myself included) start prescription thyroid based on a combination of symptoms and low basal temps. Unfortunately the over the counter supplements are not always helpful

  6. Teresa says:

    I am on lifelong thyroid replacement due to treatment with radioactive iodine. The TSH test has been the bain of my existence. My thyroid dose has been lowered lowered 30% over the years to match the decline of my TSH tests. My health has suffered greatly because of this. I finally have found a doctor who is willing to look past the TSH and look at the free T4 and free T4. So many doctors refused to do this because they were worried that their license would be revoked for putting my bones and heart at risk. I finally found a doctor who agreed with the opposite logic–too little thyroid also harms the bones and the heart. He understands that you need the right amount–not too little,not too much. He also looked at my pulse rate of 60 He said that was indicative of someone who should not be on a lower dose.

  7. Teresa says:

    I want to add to my post above–my TSH has mysteriously gone down to .3 and lower in the last ten years. I know STTM site says this might be a pituitary issue. My basal temp during the worse of it was 95. I tried to tell my the doctors it was my thyroid medicine. They refused to listen. I’m now on two grains of naturethroid and I feel great. I had been on one and a quarter grain.

    Dr E, have you ever had a case of low TSH, hypothyroidism, and pituitary tumors?

  8. Dr says:

    Hi Teresa
    I’ve seen low TSH hypothyroidism (a/k/a secondary hypothyroidism) due to pituitary “fatigue,” but not due to a tumor. However it is a possibility and if there are other signs of pituitary insufficiency, the possibility of a tumor merits investigation

  9. Sarah Hemmer says:

    Dr. E., please, you didn’t mention Acella’s NP Thyroid — any experience with it? My insurance provider forced me back to the corner of overpriced and underserved (Walgreen’s) and they filled my Armour prescription (which is ~ $1 a pill) with the Acella instead — I’m hesitant to start down this road, since the Armour has served me well enough. Is Acella more like ERSA and NatureThroid, or more like Synthroid?

  10. Dr E says:

    It is virtually the same as NatureThroid

  11. Sarah Hemmer says:

    Thanks very much, Dr. E!

  12. Lili says:

    Dr. E I was prescribed generic synthroid My blood level was 20..the medication is NOT working after four months, confirmed by subsequent blood tests, why?

  13. Dr E says:

    Hi Lili
    Synthroid is pure T4 and needs to be converted by your body to T3. Some people have difficulty doing this. Ask your doctor either for pure T3 (Cytomel) or a mixture of T4 and T3 (called WPThyroid, formerly Nature Throid)

  14. Lauren says:

    Hi Doc,
    This is a great article. Very easy to understand. I’m subclinical hypothyroidism. I went to a functional place and they only like to give NDT so I tried that.. even built it up very very slowly and I’m just too sensitive to it so I went to an endocrinologist who put me on levothyroxine. I feel like death warmed over after a week ok the levo. When can I expect to feel better again?

  15. Dr E says:

    Hi Lauren
    It sounds like you felt much better on NDT. Why don’t you go back to the functional med doctor and return to NDT. Your response to Levoxyl is not at all unusual

  16. Lauren says:

    Hello Doc,
    Thanks for your response. Unfortunately I can’t tolerate NDT. It amps me up so much I feel like I’m manic! And this is on a half of a 1/4 grain. The traditional endo I went to also doesn’t want me taking T3 containing meds because I’m trying to conceive? Since the NDT makes me freak out (and I’ve worked on my ferritin, B12, and took Ashwaghanda for a year for adrenal support), and the T4 puts me into a coma, he basically said well you can just stop taking meds if you want. I’m so lost and confused. I have no idea what to do next.

  17. cliffmaurer says:

    Hi Lauren – In reading your comments, I wanted to pass along a case about which Dr. Edelberg wrote a few years ago. It involves someone who struggled with thyroid issues and actually wanted to completely avoid any kind of prescription. He worked with Mari Stecker, one of our acupuncturists and Chinese herbalists and after a series of treatments, continues to do well. Here’s a link to the case; perhaps something to consider given your history of dealing with this stuff: https://wholehealthchicago.com/2011/09/27/hey-doc-when-are-you-going-to-write-up-my-case/

    Hope this helps!
    -Dr M

  18. Lauren says:

    Thank you!

  19. Leanna Havell says:

    I’m on NP thyroid and even though I feel like it’s helping my hair loss is still out of control. Help…!

  20. Aelxa says:

    Hi Doctor E,
    Thyroid can be complicated by having a MTHFR gene variant such as I have.This gene affects the methylation of folic acid, but many people do not realize it affects ALL vitamin and hormone conversions, like turning T4 into T3.
    I was on Synthroid and two Cytomel a day and still hypothyroid. It was only when I went up to three Cytomel a day (taking one every eight hours) that I got my T4 & T3 levels into the mid-range, but my temperature still was below 97.5F all day long. By taking half a 5mg Cytomel every four hours my temperature is now finally hitting above 98.1F and I no longer feel cold all the time, and can also tolerate heat and cold temperatures better.
    A second benefit of being in the mid -range is that my body is starting to produce growth hormone again, which is a miracle. Back in 1998 they did a IGF-1 test on me and it was only 29, and after the in-hospital IV challenge test I had to start taking daily growth hormone shots. In January 2018 my IGF-1 was 168, after getting my thyroid levels in mid-range my IGF-1 is now 248 and I can look forward to decreasing my growth hormone that I have to inject every day. I checked on PubMed (the NIH. gov site) and found that endocrinologists know that if you get the thyroid levels at mid-range then the body’s production of growth hormone will increase, yet my doctor never tried to get my levels to mid-range! Sometimes you have to adjust the timing of the medicine to get good results, not increase the amount of medicine. As you said the medicine does not last long in the bloodstream,turns out it lasts about four hours. Now my smartphone alarm goes off every four hours and I carry around a glass bottle of water to take that half tablet of 5 mg Cytomel and I am feeling better and better everyday. Better temperature tolerance, my hair and eyebrows and eyelashes are growing back, and my mood is getting better too.Turns out your brain needs T3 to make serotonin, and my chronic pain levels dropped from 7-9 down to 2-3 enabling me to cut my pain medicine by one half after only three days on the every four hour routine. Your brain needs T3 to make dopamine,more dopamine and serotonin, less pain signaling in the brain.
    Taking Cytomel every four hours is a pain, but the benefits are great. I have not had any weight loss, but perhaps my metabolism will get better over time.Years of eating less than 1000 calories a day has made me so I can not get below 205 lbs.
    However, now I am finally getting better and it is all due to timing. The sad part is I had to learn about endocrinology and make the changes in timing myself, my endocrinologist did not and is not interested in talking to me about my improvements through timing. On the other hand my pain management physician is fascinated and trying to find an endocrinologist to send his patients to for treatment, to get them in the thyroid mid-range.He has found almost all his pain patients are hypothyroid and barely in the so-called “normal” range. The benefits of being able to take much less pain medicine and having better pain control at the same time at that lower dose is one he would like to see all his patients have, if possible.

  21. Aelxa says:

    Doctor E,
    Now that my temperature is finally getting above 98.1F, when can I expect my metabolism to get faster and to start losing weight.I have been above 200 lbs for 20 years. Is there anything else I can do to help the process?

  22. Dr E says:

    Find a functional medicine doctor in your area and ask about intestinal bacteria and their relationship to obesity. Several studies have linked gut bacteria to obesity and if the gut ecology can be altered weight loss is easier

Leave a Comment