It’s Not Your Thyroid

 
Wow…you’re not terribly sensitive, are you?  What a horrible doctor!  How can you say this to me?  I know my body, and I know something’s wrong with it.  I’ve googled my symptoms, and I have almost every symptom on the list!  Plus, my aunt has hypothyroidism and she says that my symptoms are exactly the same as hers when she was first diagnosed, so…it has to be my thyroid…right?!
 
Wrong.  As an endocrinologist, I spend a fair amount of each day counseling patients that their symptoms are not, in fact, due to the thyroid.
 
Well, that’s because you don’t know what you’re talking about…you’re not running the right tests…you don’t care how I feel…you’re looking at my numbers instead of at me as a whole person…you…suck.
 
So, here’s the deal, readers.  I do care— very much— how you feel.  In fact, my job satisfaction is intimately linked to helping you achieve your goal of feeling like yourself again.  When I exit the exam room after failing to make any useful diagnosis, do you think I smugly finish my documentation of the visit, submit my ICD-10 and E&M billing codes, and pat myself on the back for being right about what you don’t have?  The answer here should be fairly obvious, but at the risk of overstating my point: no, I actually feel like crap and it typically ruins my day.
 
The problem here is that our goals don’t always align.  My primary goal is to help you feel better, whereas that is often your secondary goal.
 
Wait— what?!
 
Though you might not be consciously aware of it, your primary goal is to have me validate what Dr. Google/your aunt/your hairdresser has already convinced you is the cause of all your physical and mental ailments.  You have become overly invested in your diagnosis, and you’re not open to the possibility that your diagnosis is incorrect.
 
Honestly, the fictional patient who spat the italicized comments above is not my target audience for this post.  Until that person is prepared to truly listen, there isn’t much I can do to help.  But you, on the other hand, have stumbled upon this blog and read this far without throwing your laptop/ipad/smartphone across the room, so I will choose to interpret that as an invitation to explain why your problems may be due to something other than your thyroid.
 
Thyroid Symptoms are Nonspecific
 
The symptoms of hypothyroidism and— to some extent— hyperthyroidism, are also symptoms of myriad other conditions.  In fact, when we do studies of euthyroid (normal thyroid function) vs hypothyroid people, a surprising number of “normal” people have four or more classic “hypothyroid” symptoms.  For those interested in the source text, check out here and  here.
 
I’m not holding up these hyperlinked studies as examples of definitive, unassailable research, because they’re not.  Rather, I’m illustrating the point that your “hypothyroid” symptoms could  reflect sleep apnea, anemia, chronic stress, insufficient sleep, poor diet, depression, etc.  Essentially, there is a ton of overlap in symptoms among these conditions.
 
TSH is Highly Accurate
 
TSH (thyroid stimulating hormone) is the usual screening test to look for a thyroid problem in someone who reports “thyroid” symptoms.
 
  • I heard that focusing on the TSH alone is bad, because it doesn’t tell the whole story with my thyroid.  Usually, the TSH tells us most— if not everything— we need to know.  It can be unreliable, but these situations are rare.  Let’s assume, for the moment, that most of these rare scenarios will not apply to you.
  • But I heard that the reference range for what constitutes a normal TSH is controversial!  Yes, but not as controversial as some of the more histrionic thyroid sites out there would have you believe.  Read on.
  • Well, why do you claim the TSH is such a reliable indicator of thyroid function?
TSH Demystified:
 fullsizeoutput_440
 I realize this drawing is totally amateurish.  It came down to either this, or spending an obscene amount of time trying to paint using the computer.  Given my (lack of) tech savvy, the white board won.
 
The pituitary gland, which is in your brain, controls the thyroid.  The pituitary is very sensitive to small changes in thyroid hormone levels.  Also, note that every individual’s body likes to keep the thyroid hormone level (abbreviated here as T4, which stands for thyroxine, aka thyroid hormone) in a tightly regulated portion of the normal range.  Let’s look at the drawing below:
 
fullsizeoutput_441
 
Let’s say that your body normally likes to keep the thyroid hormone level (T4) in the middle of the normal range.  And say this correlates with a TSH in the lower half of the normal range:
 
fullsizeoutput_442
Then, your thyroid starts failing, and your T4 drops to the lower third of the normal range.  If you were to check your T4 level, it would register “normal.”  Useless, right?  We just established that the lower third of the normal range is too low for your body, which likes the T4 in the mid-normal range.  So how are we supposed to figure out that this T4 level is too low for you?  Watch this:
 
fullsizeoutput_444
 
As you can see, the TSH increases exponentially for a small, linear change in T4.  Said much less pretentiously, the TSH changes by a lot when the T4 only changes by a little.  So the TSH is a very sensitive reflection of what’s going on with your thyroid.  If your screening TSH is normal, it’s usually unlikely that you have hypothyroidism.  As with almost everything in medicine, there are very important exceptions to that statement, to be covered in a future post.
 
Thyroid Antibodies do not Equate with Hypothyroidism
 
My TSH is in the lower 1/3 of the normal range, my FT4 (free T4, the portion of circulating T4 that is not bound to proteins) is mid-normal, but my antibodies are high, and my idiot doctor told me I don’t have hypothyroidism!
 
Your doctor isn’t an idiot— at least, not because of this advice.
Antibodies Demystified:
There are many types of thyroid antibodies out there.  When it comes to hypothyroidism, though, we are usually talking about TPO Abs (thyroperoxidase antibodies).  Most people with hypothyroidism develop it because the immune system generates these TPO Abs, which attack the thyroid and, over time, destroy its ability to make thyroid hormone.
 
But, the presence of these TPO Abs in the blood does not mean that you have hypothyroidism.  It means that you are at risk of developing hypothyroidism.  If your TSH is still running in the lower 1/3 to lower 1/2 of the normal range, it is unlikely that whatever symptoms you have are caused by too little circulating thyroid hormone.  Eventually, your TSH may start to climb, and you may develop more obvious symptoms of hypothyroidism, but having TPO Abs with totally normal thyroid hormone levels is not the cause of your symptoms.
 
Thyroid Blogs Hurt People
 
I’ve done a lot of research, and I know that my thyroid is not working right.  What you’re telling me is completely different from everything I’ve read!
 
I don’t blame Patient X, above, for being frustrated.  When googling thyroid symptoms, particularly when searching for something like “doctor says I’m not hypothyroid,” you’ll get mostly nonsense on the entire first page of results.  Sure, if you keep going, you’ll eventually find something from Mayo Clinic, but there are too many highly-placed histrionic blogs promoting tests and treatments for the thyroid that are either unnecessary or frankly harmful.
 
I have a simple question you can ask yourself, which reflects upon the merit of these blogs and discussion groups.  Do the people most active in these groups seem to feel better, now that they’ve discovered the thyroid is “definitely” the problem?  No, of course not!  These blogs perform a tremendous disservice by encouraging misplaced emotional investment in a sham diagnosis, thereby preventing people from searching out (and hopefully finding) the real reasons for their ailments.  These poor folks spend years believing that if they can just find the right cocktail of thyroid hormones, they will feel whole again.  Sadly, for the majority of these people, it’s an exercise in futility.
 
If it’s not my thyroid, what is it?
 
This is the toughest question I’m asked, and I’m asked daily.  Sometimes, it’s easy to point someone in the right direction.  For example, an overweight patient who snores, wakes from sleep unrefreshed, falls asleep at her desk at work or when reading/watching TV, and feels drowsy while driving almost certainly has sleep apnea.  Diagnosing and treating sleep apnea can make someone with these symptoms feel dramatically better.
 
But what happens when it’s not this easy?  Even though it would be satisfying to find one fixable problem that could result in a dramatic improvement in symptoms, the reality is that there are usually multiple “hits” that cause “hypothyroid” symptoms.  Some of these things can be easily detected by your doctor during a workup for your symptoms.
First-line blood tests might include kidney, liver, electrolytes, and a complete blood count to look for anemia or signs of infection.  Second-line blood tests might include screening for low testosterone (men, and only if there is also loss of libido); and vitamin D and B12 deficiency, two vitamins which are pretty easy to become deficient in, and which have multiple nonspecific symptoms.  Third-line blood tests are myriad; what your doctor chooses to order will depend on what other symptoms you exhibit.
 
However, when we’re talking about multiple hits that cause fatigue, weight gain, aches, and mood changes, the most impactful “hits” usually can’t be diagnosed by objective means…
 
It’s Your Lifestyle!
 
This is the ultimate hurdle — which I typically clip with my foot as I attempt to clear it — in trying to cultivate wellness in Western medicine.  To explain: I meet many people who have seen naturopaths before me and will go on to seek their advice after I give mine.  These people almost universally “hate taking pills” and want to “get better naturally.”  What do you think would be the most “natural” way to feel better?
If you answered, “put my diet, exercise, sleep, relationships, and personal development under a magnifying glass and start addressing the problems,” you’d be breathing some pretty rarefied air.  Most people are remarkably resistant to the concept that these things are among the most important components of health!  Or, if they do accept that these are important, they refuse to contemplate the possibility that their diet/sleep/etc is the cause of their symptoms (e.g. “I’ve always eaten like this, my whole life, so it doesn’t make sense that I’m gaining weight now).
 
Sadly, until people are ready to embrace the above philosophy, they will never feel better.  They will go to “idiot” Western doctors who never help them.  They will flock to naturopaths who do $500-1000 of (mostly) worthless blood/urine/salivary testing, then put them on a shopping bag full of expensive drops, pills and creams.  These “natural” substances will nonetheless need to be detoxified by the liver which, occasionally, will be overwhelmed  and harmed by these “drugs.”
Sometimes, the drugs will “seem to help” for a few months, but when the placebo effect wanes, the patient will be back at square one.  Can naturopaths help people?  For sure.  But usually not this particular demographic of patient.
 
Entire books have been written about what constitutes a healthy eating strategy, effective exercise, good sleep hygiene, and a sensible approach to cultivating happiness within oneself and in one’s relationships.  I will not attempt to replicate all that in this post, but I will address some of these issues in future posts.  The point is, if you feel unwell and your doctor has said “you’re fine,” you’re probably not fine.
Objectively, on paper, you may look ok.  But if you do the “deep dive” into each of the aspects of life I described above, you will have taken a giant step closer to wellness.  Is it going to be harder, more time-consuming, and fraught with more dead-ends than simply taking a pill?  Absolutely.  But, when it’s not your thyroid, what’s the alternative?
 
Have you ever wondered if your thyroid is the answer?  Has it been the answer for you, or are you still searching?  What has your experience been with searching for reliable information about the thyroid?  If you’re a doctor, what’s your take on how often the thyroid is really the answer?
Comment below!
 
By interacting with me in the Comments, you agree that you have read and will abide by my Disclaimer.

20 Replies to “It’s Not Your Thyroid”

  1. Rarely is thyroid dysfunction the answer. Here’s a question for you. Have you ever heard of a naturopath saying “sorry, I think you may simply have a psychological problem. I think you should see a psychologist.”

  2. I have the sense your question is rhetorical, but I’ll answer it anyway. My experience with naturopathy supports the old adage, “When your only tool is a hammer, everything looks like a nail.” You’re right, Chris. Often, regardless of what the blood work shows, the patient gets diagnosed with a thyroid problem and gets a prescription.

    I will concede, however, that allopathic doctors like me are also not always great about broaching the subject of psychologic issues being the root of the patient’s problem. I attempt to go there sometimes, but there are many other times when I get the vibe that the patient would not be receptive, so I don’t discuss it.

    Are you in the medical field, Chris? What’s your background?

  3. @HD

    Please, I beg you–do not call yourself an “allopathic doctor”. You are an MD, end of story.

    On the matter of telling patients to consider psychological “roots”, I was told that some itching I had was “psychological” and it infuriated me. But that was because it turned out to be related to my significant allergies. The dermatologist had prescribed an antihistamine, which literally knocked me out, so I didn’t take it. She then determines my problem must be “psychological”. I proceeded to work with the allergist and have got things under control. Still, irritated as I was, I did not turn to a quack! As I told them all, I have no issue with seeing mental health professionals when I need them, but, yeah, this is a tricky issue for physicians. My advice is to be sure you have some rapport with a patient before throwing this one out there, and be sure you’ve been thorough.

      1. Thank you kindly HD, it’s nice to be heard. I understand your preference for anonymity, but I sure wish I knew where you practice : ) I have an adult daughter with a nasty case of hypothyroidism. She lives in a small town and handles it with her PCP, not to complete satisfaction. I’m NOT seeking advice, just think you must be a really good doc.

    1. Funny thing – I tend to be suspicious of doctors who call themselves allopaths, because to me that is a signal they’re into alternative medicine at least in some way, at least in Germany, where alternative medicine is ridiculously popular and there is a risk of unknowingly ending up with e.g., a GP who’ll send a patient to actual quacks – this has happened to my friends (e.g., Heilpraktiker institution is quite a nightmare, way worse than naturopaths in the US).
      Then again, maybe I’m too judgemental and some EBM doctors call themselves allopathic to avoid unnecessary confrontations with alt-oriented patients who assume the evil “Western” doctors will never approach their “dis-ease” in a sufficiently “holistic” manner? 😀

      1. You know what? I never really thought about the derivation of the term “allopathic” until you and another commenter brought it up. So I looked it up, and apparently the term was coined by the guy who founded homeopathy, to be used as a pejorative term to refer to evidence-based medicine. I hereby declare that I will never again refer to myself as an allopathic physician!

        1. Oh my goodness! I’m so glad you looked it up! I knew about the association to Hanneman and I guess I thought everyone did. Thanks for ‘splaining.

      2. Well, usually in the US, people who write skeptical blogs put “allopathic” in quotes to make clear that they don’t consider it a valid term. It looks like lovely HD didn’t know this, but happily–she looked it up and sees the harm! Yay! I like her (I think she’s a her, but could be wrong) even more!

        I have a young friend I met in Alaska (we were both tourists) who lives in Germany. She has a severely underactive thyroid and had stopped taking her meds while traveling. She had gained substantial weight and didn’t feel well at all. She said she had thought she’d “try homeopathy or acupunture, or something..”. Well, as I am at least 30 years her senior, I gave her the full on Mama treatment and got her to a free clinic to get a prescription. Turns out she’s an only child with very loving parents who wrote to thank me for intervening! My young friend has happily learned her lesson and we are great friends five years on. She is now expecting her first child and I’m hoping to get to Germany in time for the happy event. This is a happy ending, but most times I’ve tried this, I utterly fail. I can only say that this young woman was only toying with alt med and upon hearing how dangerous this could be, she came right around. Had she been totally sucked in, I wouldn’t have had a chance. She now calls me Mama J and considers me her second Mom; she even asked for suggestions for baby names! This makes all the failures worth it.

        1. Good job convincing her!
          I see people with similar ideas in health forums every once in a while, usually they reappear after some time complaining about tiredness, weight gain and depression (oh really!). The worst case I saw was an old post by another thyroidless person who had decided to take iodine supplements to support thyroid function and use homeopathic pills instead of her T4 meds, which she basically cannot live without (she didn’t want “artificial hormones”). She could have really used a full on Mama treatment, but I never saw her return to the forum. That was a really bad one.

          1. Ack! The naturalistic fallacy! I hear it all the time…”but, but…it’s NATURAL”. So is shit I tersely reply.

  4. I am a scientist and autoimmune disease sufferer, and, as both, I have been frustrated by the rampant pseudoscience that surrounds endocrine disorders and also by the medical establishment. The latter told me, when experiencing many of the hallmark symptoms of hypothyroidism (fatigue, cold sensitivity, constipation — and I had a goiter and clear lymphocytic infiltration of my thyroid), that I was simply depressed. My TSH was just below the upper cut-off for the normal range. I was left to struggle with extreme fatigue and other symptoms (which caused me to leave a PhD program four years in), until a sympathetic GP agreed to put me on levothyroxine. My TSH later spiked to 30, and I was finally diagnosed with Hashimoto’s thyroiditis, having positive anti-TPO and anti-TG tests.

    The point of the above is that there is definitely a population of people who go to their “allopathic” doctor with real endocrine disorders who are told they are normal or that it’s “not their thyroid,” and they turn to naturopaths and pseudoscience because they have nowhere else to turn. The literature* supports the idea that intra-individual TSH variation is much smaller than the population variation, which explains why I start feeling terrible at a TSH of 3 (well below the upper limit of the population range). There is a real issue with doctors ignoring (or refusing to pursue) real symptoms because the tests are “normal” (even though specialists have suggested the use of different test ranges).

    *Andersen, et al. 2002. Narrow individual variations in serum T(4) and T(3) in normal subjects: a clue to the understanding of subclinical thyroid disease. J. Clin. Endocrinol. Metab. 87(3): 1068.

    1. EM, you’re spot on. Though most people with “hypothyroid” symptoms will turn out to have an explanation other than the thyroid for their symptoms, there are others who will fit the exact situation you describe and benefit greatly from levothyroxine therapy. Look for a future post titled something like “It’s Probably Your Thyroid.”

      1. There can be a problem with GPs forgetting that the ‘normal range’ is just that and that an individual may fall anywhere along it when they are symptom free (along with a very small pecent being outside it to be symptom free). Before I moved I had the ‘normal range’ conversation with every GP in the practice I was registered with as my results for TSH, when I am symptom free, tend to be right at the bottom of the range and they start fretting about me having too much levothyroxine. By symptom free I mean things like my hair not falling out in handfuls, skin awful, sleeping all the time etc etc. Reminding them what a normal range actually means, pointing out that I didn’t have any symptoms of hyperthyroidism and finally drawng attention to my weight worked, but it was irritating to have to have the conversation every time my test results came in.. Thankfully the GP’s at the practice where I now live are rather more on the ball.

        Thank you for doing this blog, good resources one can refer people with questions to are all too rare.

    2. Hello EM–I look forward to our host’s response to this–oops! I see it’s already there, so I’ll watch for that post! I think that experiences like yours are at the crux of why, sometimes, otherwise sane and logical people will go ahead and try a naturopath. I also think that while many of the medical/skeptical blogs that I follow acknowledge this problem and say that docs should address it, nothing much happens. It is this type of situation that originally inspired Brit Hermes to become a naturopath. Hermes is a former naturopath whose blog led me here.

      https://www.naturopathicdiaries.com

      While I can identify with everything HD writes about her altie-type patient, I also have every sympathy for what you describe and have had similar experiences. I also have an adult daughter with serious thyroid disease (still trying to figure out if she has Hashimoto’s or ???). Her care is complicated by yet another failure of our system–she has very poor insurance and grotesquly high decuctibles, co-pays, etc., that make it very difficult for her to get specialist care.

      It’s all a complex problem and one of the issues for doctors, especially PCP’s , is the time factor. I sypathize with that as well, but I also sypathize with stories such as yours. I’m happy to hear you fianlly got some answers, but very sorry for the delay involved.

  5. Logarithmic growth is slower than linear growth. I think you meant to say exponential or quadratic or something else.

    I noticed this mistake throughout your blog. Might want to fix it here and elsewhere.

    1. Thanks, Joe. After reading your comment, I dug into this terminology a bit more. I’m embarrassed to say that, as a former star Mathlete, I do not understand this logarithm stuff very well. My brain does not process this very well anymore after decades of not thinking about it. I think you may be right that I have been using the terminology incorrectly for years, which means that many of my colleagues are doing the same. When I have a free moment, I’ll go back to each post and change the verbiage.

  6. I seem to be an oddball case of Hashimoto’s and have been diagnosed by an endocrinologist. My TSH had been tested a couple times because of symptoms and family history, but came back in the normal range. I went on a mission trip to help a couple of local doctors move with their kids. Being able to closely observe how cold I was when I shouldn’t have been, how tired I was, and how little I ate due to lack of appetite, they strongly suspected hypothyroidism and said if it were up to them they would put me on a low dose of Levothyroxine to see if it helped despite much TSH being in the normal range. My TSH was tested when I got home and was still normal, so no meds until a year later when I mentioned the doctors’ baby kept pressing on a spot on the front of my neck when he was grumpy and it was really tender and asked if that was normal. My PCP then ordered an ultrasound that revealed a thyroid cyst in that location, so she ordered a full thyroid panel. Despite having a good TSH level, my T3 level was almost below the normal range, so we tried Levothyroxine and it helped a lot. I later spent a year and a half with hypothyroid symptoms when the dose became too low, but we didn’t realize it because it had been helping and my TSH was still normal. We didn’t figure out I needed a higher dose until another baby found a tender spot a little over from the original and another ultrasound revealed a new cyst. My current PCP, endocrinologist, and I have found that my body does best of my TSH is at the very bottom of the normal range, but there is correlation with symptoms, rising TSH levels, and cyst growth.
    In my case, I appreciated that I had a PCP that was a little more liberal with trying a low dose of meds despite normal TSH levels, but that was also very cautious about putting patients into a hyperthyroid state. Given my experience, I think it’s possible that some people with TSH in the normal range can have thyroid problems, but there should be some evidence of meds having an effect if it truly is a thyroid problem. For example, evidence of TSH rising as symptoms return, like I mentioned earlier.

    1. Thanks for noting that it is possible for hypothyroid people to have symptoms of hypothyroidism with a TSH in the upper half of the normal range. Some will feel better with a TSH in the lower part of the normal range. In general, T3 levels are not very useful, but it is reasonable to push the dose of levothyroxine to aim for a low-normal TSH in those who feel best there.

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