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.

45 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.

    1. Wait, no! Calling it any form of hypothyroidism would pathologize it. How about just “Non-specific symptoms”?

        1. As the RD for Peds Endo and Pulm I am always glad to refer back to you MD’s as out of my scope when a mom states their child is >99% in BMI because they need their thyroid checked. In Pulm I hear that the weight gain is due to inhaled steroids. Delving deeper into the family life I am usually able to discern the culprits, but it is hard to work on behavior change when blame is placed inappropriately.

  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.

  7. Thank you for summing up what I needed to hear. I haven’t gone down the whole thyroid road yet, just stumbling around in the dark trying to figure out why I feel breathless most of the time. All the specialists have not been able to diagnose me with anything that would cause this, but as you said, (sort of) I am still short of breath so something is out of whack. Now it’s up to me to examine all those basic areas of life that contribute to good health and start fixing the broken ones. Thanks again.

  8. does the author have any scientific or medical background?
    even when tsh is in normal range but there are antibodies the activity of thyroid will create immune response
    that means that giving thyroid hormones orally will reduce natural thyroid activity -> will reduce immune response -> will increase patients well being.
    you don’t need to treat number, you need to threat the cause and if that is not possible then the mechanism.
    If the mechanism is that thyroid actvity causes immune response then the thyroid avtivity should be repressed.
    also, most organs continue to work fairly well even when they’re damaged. it means the numbers can stay okay, until the very end when the organ completely shuts off. that does not mean the patients should not get any medication before the organ completely shuts off.

    1. Yes to your question as to whether the author has a medical background. No to most of everything else you wrote. If you are indeed a doctor, I’m wagering you’re not an endocrinologist, internist, or any specialty remotely connected to the endocrine system.

      1. so would you kindly explain where I was wrong and what’s the right mechanism of things where mine was wrong.

    1. Some valid points in this article, some overly dramatic over statements. If the implication here is that telling someone “it’s not your thyroid,” while simultaneously validating their symptoms and looking for a root cause, is sexist, then obviously I disagree. But I’m just guessing at the implication since all you provided was a link.

  9. Great post, and I like how you used lament terms for people who may not understand hypothyroidism that well. So long story, I’m 32-years-old and I have congenital hypothyroidism. Up until a few months ago I’d been taking 125 mcg of Levothyroxine with normal TSH levels for the past ten years, if not longer. I’d noticed some classic symptoms of fatigue, hair loss, cold feet, foggy brain the last few years or so, but have always thought it was “my normal” and all my tests said normal, too. I decided to ask my doctor to switch me to Armour last November, since a nurse mentioned it to me as a better alternative to Levo so he agreed and put me on 60 mcg of Armour. I felt great for about a month then even more sluggish a couple months later. Not satisfied with the results I had my levels retested and my TSH was high at 8.6 and my Free T4 was low/normal. Since one month ago, I’ve been and continue to suffer from menorrhagia and I went to see an endocrinologist and she put me back on levothyroxin 175 mcg and 5 mcg cytomel. I’m still suffering from classic hypo symptoms as well as weight gain, bloat, and leg cramps. They had me do an ultrasound which showed nothing out of the ordinary aside from a 17 mm thick endometrium and a heterogeneous hyperechoic ovoid which had no definitive vascular stalk. No fibroids found either. My Endo is convinced everything will balance itself out soon and everything will go away, but only time will tell, I think. Anyways, as for all the websites that promote alternatives to Levo, I can say first hand that it’s not always what it’s cracked up to be and truthfully, I’ve never felt so irresponsible about my own health as when I decided to take advice from a stranger and telling my doctor to put me on something I knew little about at the time. Thanks for keeping it real and providing some factual truths about hypothyroidism.

  10. It is quite refreshing to hear from a medical practitioner on this, invariably there is a lot of volume from online ‘experts’ but no discussion with the qualified professionals. I do agree we have to be wary of online ‘experts’ however I also feel that perhaps most MD’s (or GP’s in my case writing from the UK) are less invested in finding a solution than it sounds you are. There is a definite sense here in the UK that practitioners just want you to get out of their office, and so of course out of desperation we resort to our own diagnostics and seek advice from online bloggers and forums from equally desperate people.
    For 8 months I have been suffering from sever fatigue, unbalance, dizziness, numb hands and feet, the list goes on. My symptoms seem to align exactly with those on the list for hypothyroidism, but I have been told my thyroid is normal. Once MS and now thyroid problems have been ruled out the diagnostic attempts have stopped, and I have been sent away to ‘think about’ anti-depressants. I have seen multiple GP’s (you can never get an appt to see the same one here) a neurologist and two endocrinologists, all of whom have said ‘you are probably depressed I can write you a presecirpion’.
    Ok so perhaps my thyroid is normal, but does that mean their quick response to medicate me with antidepressants is the right thing to do? (I am not depressed btw! Aside from the ongoing frustration at feeling like cr*p 24 hours a day I’m actually very happy and am fortunate to have a nice life!)

    I suppose what I’m trying to say -in a rather long winded way- whilst I appreciate the frustration medical practitioners must feel when faced with an accusatory patient, can you not also appreciate the frustration and sheer desperation patients feel when they can’t find an answer to their feeling so unwell?
    Until 8 months ago I was a keen marathon runner, now I can barely get up the stairs without feeling like I’m going to pass out. In short I am baffled and to date no one has shown any real interest in trying to help. As a result I desperately google and search for answers as to why my body is not working properly. Most patients who face you in that accusatory way are not behaving that way because they think they know better. But because they are desperate.

    1. Abigail, I’m sorry to hear that you’re having such a rough time. I absolutely appreciate that many of the people I see are desperate for answers, especially those who have had an abrupt change in their health. To go from running marathons to barely being able to climb stairs is clearly not normal and, frankly, does not suggest that depression is the sole diagnosis (I’m not offering an opinion about whether your docs are right or wrong about suggesting depression; I’m just noting that anyone who experiences a physical decline as marked as what you describe probably has something else going on).

      In my practice, I tend to see very few patients who have had such an abrupt shift in their health status. When I really dig into the history, there are typically signs that problems have been brewing for a long time, which is why I am inclined to think that many of these folks have unaddressed lifestyle problems, as opposed to measurable organic/hormonal pathology. When they insist that it must be the thyroid, or adrenal fatigue, or a “hormonal imbalance,” despite all evidence to the contrary, that’s when I become frustrated. They don’t have the diagnosis they want, and they’re not willing to hear what they need to hear. So they leave my office unsatisfied, and I also feel lousy that I couldn’t help.

      To put a finer point on it, these types of encounters are totally different from encounters with people who clearly have something more unusual going on, which could be a common presentation of an unusual disease or an uncommon presentation of a common disease. These situations are really hard, really subjective (who determines that what they have isn’t “just” a lifestyle problem?), and really difficult to sort out sometimes, since the patient may not get to the right kind of doctor for a long time.

      Interestingly, I listened to an episode of the Reply All podcast a couple of months ago, in which they profiled a company that crowd sources perplexing medical cases. Basically, the person with the problem pays a fee to the site, uploads all their info, and then the crowd (doctors with side gigs, retired docs, other health professionals) digs in. The “winner” gets a portion of the fee, with winning being determined by the person with the problem (i.e. do they get the answer confirmed by their local doctors doing the workup or not). While I see all kinds of problems with this model, I do think it has merit in some cases, and could potentially help people with perplexing cases either get answers or at least advance the diagnostic process.

      1. Thank you for your comments. I’m not sure where to go from here, I guess I have to keep trying and hope to get a diagnosis from somewhere.
        Crowdfunding is an interesting concept for health diagnosis, though slightly sad that it has resorted to that! I suspect with NHS demands rising but UK residents unwilling to pay more into our national insurance we will probably start seeing similar approaches here!
        Thank you

  11. It was recently discovered that I have a benign, (per FNA biopsy) multi-nodular goiter. Two of the nodules are greater than 2.5cm.
    My TSH is 3.6. (normal)
    On one hand, I’ve had all the symptoms of hypothyroidism all of my life – especially, the cold when others are warm thing. The symptoms have gotten worse in the last year. But all of my thyroid numbers have always been normal.
    On the other hand, my lifestyle needs severe change. I eat like crap, don’t exercise enough, and drink too much. I am very obese. These problems have also gotten worse in the last year.
    Back to the first hand, though, how did I grow these nodules with normal thyroid hormones?
    And both hands (confused) what is causing what? Is the bad lifestyle causing hypothyroidism-like symptoms; or is a thyroid problem making it harder to change a bad lifestyle?
    I am not Patient X. I’m going to change my lifestyle, regardless. But should thyroid hormone be a part of that change? How about iodine?
    I am Patient X, in that I’m an Internet researcher who has become very confused.
    Thanks a million for any info or comment!!!

    1. Kat, though my policy is to not give individual medical advice, I can comment in general terms. First, I recommend checking out this post, if you haven’t already: The Ultimate Guide to Thyroid Function Testing – Hypothyroidism Edition. I think it will help clarify a couple of your questions.

      Next, thyroid nodules are very common and their presence/growth usually runs a course that is independent from one’s thyroid hormone levels. In other words, the function of the thyroid and the structure of the thyroid are usually two separate issues.

      Third, when people tell me (which they do, often) that they have had hypothyroid symptoms their whole life, 99.9% of the time their symptoms have nothing to do with hypothyroidism. Congenital hypothyroidism should be caught in infancy or early childhood due to failure to thrive. In the civilized world, there’s no way somebody makes it all the way through infancy, early childhood, puberty, adolescence, and early adulthood with undiagnosed congenital hypothyroidism.

      Fourth, bad lifestyle, while not good for one’s body, does not generally cause hypothyroidism.

      Last, iodine supplementation – in iodine-sufficient areas of the world – is typically not going to be helpful for thyroid function. In fact, people who take mega-doses of iodine can suppress thyroid function.

  12. First, I want to say thank you for saving me $1,000’s of dollars going down the wrong rabbit hole. I was so ready to throw in the towel with my endo and go see a naturopathic doctor. After reading this blog post, I won’t consider that route again. I think my biggest frustration is that because I am obese, any symptomology I have is always dismissed as “you just need to lose weight and you will feel better”. Even my own 8yo daughter was a victim of this kind of dismissal-we went to a gastro because of constipation issues who basically said her bowel movements are fine but her BMI is too high. After making significant dietary changes and still not seeing a change in her constipation, I went for a second opinion and guess what? She has hypothyroidism which can cause CONSTIPATION! (We haven’t tested her for Hashimoto’s yet.) I have lots of other questions for you but I want to read some of your other blog posts first and see if they are answered. In the meantime, I thank you.

  13. My personal experience with subclinical hypothyroidism was made easier because I had a family history of low thyroid function AND my primary care physician is a specialist in internal medicine with a fantastic ability to build rapport with patients. Few people are so lucky.

    I had convinced myself for a few years that it was just being in school for engineering that was exhausting me. A rough sleep schedule and a lot of stress. Toward my last semester, however, there were days when I sincerely hoped I wouldn’t wake up, I was constantly tired, and ended up completely unable to cope with typical stressors that I once would have laughed off. This is clearly a character flaw! I’m just crumbling under stress. Or at least that was what I thought. I felt terrible and a little crazy for feeling terrible and judged myself as lazy. If only I could get more sleep I’d perk right up.

    Fast-forward six months after completing my classes. I should feel refreshed, right? Still nope.

    I knew I had a problem when I was already eating a perfect diet and still experiencing extreme fatigue and hypersomnia — to the point where it was exhausting to do basic household chores or take my dog for a walk. I was constantly in a state of mental fog that made decision-making or basic mathematics impossible and driving out of the question. This kind of exhaustion gets treated as “depression” or a mood disorder in women quite a lot. No, I’m not depressed! I’m angry and frustrated that I’m so tired all the time for seemingly no reason.

    Being on medicine and being not on medicine (even a tiny 50 mcg dose) is night and day for me. The minute I was put on levo my brain fog started to recede and I began to notice other positive physical changes in my hair and skin that let me know my doctor and I were on the right track. We’re still working together to monitor levels and track progress.

    Consider my case: normal, otherwise completely healthy young woman with a recently-discovered family history of oddly underactive thyroid (not autoimmune, possibly genetic), perfect diet, normal weight, not an exerciser beyond regular walks with her dog of about 1-6 miles.

    It’s open and shut, right? Or at least easy to get someone to test levels and, even on the ‘low’ end of normal, closely monitor a tiny dose to see if the weird fatigue dissipates and there aren’t side effects.

    Now imagine that you’re presented with a different case: an overweight young woman without a perfect diet, maybe not a family history, and a host of other allergies and inflammatory conditions. She gets a lot more exercise than her normal-weight counterpart but still can’t lose weight.

    It’s EASY to find and diagnose and treat hypothyroidism in me because I’m not exposed to other biases. I’ve been roughly the same weight (within about 10 pounds) since college. But I also eat a perfect diet and my case in hypothyroidism terms is mild — I take a very small dose of replacement and the effects are noticeable.

    But my case also points out that diet and exercise, as you have so aptly blogged, is not a replacement for thyroid treatment if you need it. Unfortunately, sometimes you need thyroid treatment and the doctors have trouble looking past your weight, gender, and other medical problems to do the tests that would actually help you. My doctor couldn’t prescribe diet because I was already doing that. Could prescribe exercise, but first I needed to be able to stay awake to do that.

    The difference between my physician and many other physicians I’ve met is that my doctor actually ordered a full blood panel, a urinalysis, AND a thyroid test in order to make a diagnosis and to get an idea and didn’t blame my lifestyle for the results.

    What I’ve found is that lifestyle changes typically just make underlying medical issues easier for doctors to diagnose, but they don’t and can’t make those underlying medical issues go away.

    I can only imagine how difficult it is for people who have not yet made extensive lifestyle changes to be taken seriously. It only took my family and I a decade to switch over to a non-processed, high-fiber, low-glycemic, mostly home-cooked diet.

    I find it unrealistic to expect people to change their lifestyles before they can get a real (or at least basic) hearing about sudden changes in their fundamental feeling of well-being.

    I can say, however, that the overall health benefits of making extensive lifestyle changes have been real — because when my family and I experience health problems they are DEAD OBVIOUS to doctors and dead obviously in need of intervention.

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