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.
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?
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:
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:
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:
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.
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?
By interacting with me in the Comments, you agree that you have read and will abide by my Disclaimer.
84 Replies to “It’s Not Your Thyroid”
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.”
I did have a naturopath tell me I had a HyperParathyroidism problem and needed to see a surgeon right away, and not to continue “watching it” as my endocrinologist was doing for the last year and a half. Best $120 I ever spent for a medical records review, which I only did after every one of my physicians said something was wrong, but they did not know what it was.
I did pass on becoming a regular patient with sauna treatments , etc with the naturopath. And when the bone scan showed Severe Osteopenia, only 16 months after a Normal Bone Scan result had been done, I got myself an excellent surgeon and got that Parathyroid tumor taken out ASAP.
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?
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.
Well said, kissmetoad. I agree.
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.
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? 😀
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!
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.
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.
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.
Ack! The naturalistic fallacy! I hear it all the time…”but, but…it’s NATURAL”. So is shit I tersely reply.
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.
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.”
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.
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.
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.
I feel like there should be an ICD 10 code for “euthyroid hypothyroidism”.
Wait, no! Calling it any form of hypothyroidism would pathologize it. How about just “Non-specific symptoms”?
I thought PCD was making a wry comment. There probably should have been a winking emoji after the comment.
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.
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.
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.
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.
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.
I posted a comment below already asking for clarity on a weird case of thyroid problem, but this is very interesting to me, I am one of those who are feeling best at the lower bottom of the TSH but what is the safe bottom? I know that if the TSH is very suppressed it’s possible to have problems with osteoporosis. Again thank you for sharing your knowledge, not many doctors are willing to properly interact.
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.
You’re welcome, and good luck to you Beth.
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.
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.
so would you kindly explain where I was wrong and what’s the right mechanism of things where mine was wrong.
Your entire explanation of the mechanism is not correct. Please read the following: http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis1/
You have to register to read it, but registration is free.
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.
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.
Thanks for sharing, Nora, and I wish you the best of health.
According to Drugs.com 60 mg of Armor contains 60mcg of T4 and 10mcg of T3. [HD: 1 grain of Armour, 60mg, has 38mcg of T4 and 9mcg of T3.]
So I am assuming here your physician put you on 60mg of Armor Thyroid, not 60 mcg of Armor thyroid.
Personally, since I avoid taking a medication made from animals, I have and will always stay with taking Synthroid and Cytomel. But to halve your medication means of course you would have the elevated TSH with too low T4 develop.
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.
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.
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!
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!!!
I didn’t realize my comment would have a picture. That one was made 6 years ago, at my thinnest.
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.
Thank you so much!!! That’s EXACTLY what I needed to know!
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.
Same here with everything is tied to weight. I feel ya. I’m sorry that is also the case with you.
You are quite welcome. I’m really glad this information has helped you, Tracy.
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.
This video says it all: https://youtu.be/zgL4055crpA
This is one of my favorite videos, ever. I must have watched this 20 times over the last couple of years!
I am 71 years old and have been on Synthroid since I was 19 and diagnosed with hypothyroidism. That was after the idiot doctor treated me for depression with Valium which they were handing out to female patients like candy because of course if you were female and in pain or having medical dysfunction in the 1960s, you had to be hysterical. Finally when the Valium did nothing he ran a thyroid panel. Everyone was put on 3 mg back then, the highest dose. I was on that for 6 or 7 years until I went to a new doctor fresh out of residency who immediately cut my dose in half and monitored it for the next year. During the previous years, from being initially put on Synthroid to seeing the new doctor, I didn’t have any blood tests and didn’t see the doctor – they just wrote a prescription and it was more or less eternal. I have dealt with this condition for over 50 years and it has wrecked my life at few points. Like right now. I can’t find a doctor who knows what they are doing. I’m not at the right dosage. I can feel it. I have hair loss, poor sleep, dry skin and can’t lose weight even with fasting and daily exercise. My TSH two weeks ago was 1 on a reference range of 0.45-5.33 and the idiot endocrinologist says it is “fine” and renew my Rx for 150 mcg. I need a decrease. But when a patient stands up for herself, she is a B and a difficult patient. Why do medical doctors insist on doctoring the lab results and pay no attention to the live, intelligent patient who has lived with hypothyroidism for longer the doctor has been alive? This is why people get desperate and go to thyroid blogs, you tube videos and naturopaths. Because MDs are arrogant and condescending and DO NOT LISTEN. I waited 14 weeks for the appointment with the endocrinologist and he is as clueless and indifferent as the PCP I was seeing.
Can losing weight effect the TSH?
You’d have to be more specific. Are you talking about someone on thyroid hormone? Someone with hypothyroidism not on thyroid hormone? Someone without hypothyroidism?
Sorry for the lack of info. I will explain.
My thyroid dose (T4 only) has been decreased from 88mcg daily, to 88mcg 6 days/week 75mcg 1 day a week. TSH was .40.
Lowered the dose to 88mcg 5 days, 75mcg 2 days and TSH test was .25.
I’ve been swimming 3x a week and fasting 2 days a week during this time and have lost 5 pounds in 8 weeks. I wondered if my lower weight could effect the dosage and/or TSH results.
Although I can’t speak to your situation, I can say that weight loss sometimes leads to a decreased thyroid hormone dose requirement. Not always, though.
Thanks for replying. It’s just a conundrum….we keep lowering the dose, but my TSH keeps getting lower, too. So frustrating!
You can also feel really bad because of primary hyperparathyroidism. Normally surgery is the solution, but when only 1 parathyroid is left that means going hypoparathyroid and that may be the start of new suffering. Is there a post you can do, doctor, on hyper and hypopara? (There is an informative site: parathyroid.com, it is by a surgeon who performs thousands of parathyroidectomies, but also lives off it, so I am not sure how trustworthy that is).
I had my Parathyroid surgery done by this group because of one reason….the physician who heads the group invented a machine that can test each Parathyroid gland during the surgery, and determine exactly which gland, or glands, are defective and need to be removed.
With a 97% success rate and a guarantee of free repeat surgery, if the Hyperparathyroidism is not cured, I decided this fast 20 minute surgery with a small 1 inch incision at the base of the neck was the correct choice for me. And lots of people who work in the medical field go only to them.
Of course, I worked over 20 years in the medical field as a Respiratory Therapist, doing Recovery Room, SICU, CCU, ICU, and ER. So I have seen every botched surgical procedure out there.
There is nothing worse than a surgeon who goes enny, meeny, miney, moe to determine which Parathyroid gland is defective. Often leaving some patients with no Parathyroid gland because they took out all the good ones, leaving the Parathyroid tumor as all that was left.
There is a reason people come from all over the World to have their Parathyroid surgery done by those specialists in Florida, they know exactly what they are doing and have the machine to test the PTH outputs of all the Parathyroid glands during the surgery, so no good Parathyroid glands are mistakenly removed. They do this surgery all day long, and they have it down to an exact science.
Would you avoid going to a heart surgeon because all he or she does is heart surgery?? No, because you want an experienced surgeon who knows exactly what they are doing.
I just found your blog, thanks so much for your hard work! As a professional non-medical scientist, I have been intensely frustrated by the lack of verifiable information I could find.
I was recently diagnosed with maybe-possibly subclinical hypothyroidism by my doctor. He brought it up when I described my symptoms (insomnia, fatigue, brain fog, aching), I’d never even really heard of hypothyroidism before. He asked if I had had a bad cold or flu in January (I had) and said this might have damaged my thyroid, and said my thyroid seemed to be slightly swollen and based on my last few physicals I seemed to have gained weight (true, it did spike suddenly). He ran about six tests, everything including TSH was normal, except my TPOAb was over 400 and my T3 was on the low end. So he put me on a microdose of liothrionine, which seems to have correlated with a marked improvement in my well-being almost immediately.
I haven’t read through the whole site yet, but I’m wondering now if this was all a big mistake, that maybe I don’t have “early hypothyroidism” at all, and worse, that maybe the liothrionine just gave me a little boost and I have some other condition that still needs to be addressed.
Not sure how to broach any of this with my doctor, I don’t want to be difficult or be one of those “but my Internet research” people. Technically this blog is internet research, after all.
TIA for any advice you may have.
Though I can’t give you any medical advice, I can recommend that you read everything in the “Thyroid” category on this site. After that, it sounds like you’ll need to decide whether you can have an honest conversation with your doctor, or whether you’ll need to seek another opinion. I wish you the best of luck and best of health.
Basically the sense I’m getting from everything I’ve read here is that his diagnosis was unusual and something only crazy non-doctor internet loons would suggest based on my levels. This is disheartening. I’m just confused because most of the tone of this blog is that it’s the patients who come in armed with a wild thyroid theory and the trustworthy educated doctor is trying to dissuade them, but in my case it’s the reverse? I don’t really know what to make of this. He’s just a normal family doctor with a large and reputable network, why would he suggest something like this to me out of the blue?
Without having access to absolutely all the clinical data here (which I never do on the internet), I can say this: patients come in armed with wild thyroid theories because they learned it from somewhere. Maybe it was an Alt Med site, or maybe it was their health care provider who seems otherwise “normal.”
I work with mainstream doctors who practice good medicine most of the time, but do wacky things some of the time. Over the years, I’ve learned that being a “good” or “bad” doctor is not always a binary issue.
Thanks for your responses! I can’t tell you how valuable your input has been. It’s hard to research this as a layperson, wading through clickbait and subreddits full of the wildest claims… maybe my doctor assumed I was sneakily fishing for a hypothyroidism diagnosis by listing classic symptoms and prescribed me a low dose just to prove to me I don’t have it, I don’t know? I admit I was relieved to think there was a simple solution to all the fatigue and headaches and weight gain. But I want the correct solution! I guess I have a long and irritating journey ahead. Thanks again.
Hmmm, your symptoms could be as simple as too much blue light, when we spend hours in windowless workspaces and then hours indoors before bed with electronic devices. And if you have LED lightbulbs in all your lights at home, a flatscreen TV, a flatscreen computer, and a Smartphone….you will be getting enough blue light to keep you awake and an insomniac.
Just the insomnia alone will cause brainfog, achiness and fatigue over time.
I hope after all this time you have gotten some help pinning down the cause.
I had symptoms of hypothyroidism: cold intolerance, constipation, and fatigue that interferes with my everyday life and work for about 3 years. My lab results all came back within normal ranges. I heard you, it’s not my thyroid.
I thought it was not my thyroid either, and set out to fix every other aspects of my life. My weight has always been normal with a BMI<22. My diet is good, mostly home-cooked, very little processed food, definitely more than 5 servings of veggies per day, moderate whole-grains, protein and healthy fat. I saw a psychiatrist and we tried cognitive/behavior therapy, a lot of combinations of antidepressant and stimulant, but none improved my energy consistently. I saw a sleep specialist, was diagnosed with mild sleep apnea and started using CPAP. However, I got bloated with the lowest pressure allowed by the machine. Combined with the fact that I was diagnosed based on 3 hours of sleep in the lab, I stopped using the CPAP after talking to my PCP. I had my roommate checking on me sleeping when she goes to bathroom at night, and she never noticed anything abnormal. I now go to bed before 11 pm and try to get up by 7:30 if I could. I tried to exercise as much as I could, but because of my fatigue all I could do was to walk for an hour every morning. I actually like my job in a research lab. My supervisor understands my fatigue problem, my colleagues are great to work with. However, because 8 hoursx5 days is all I could handle at this point, and I sometimes had to sleep through the weekends, I had nearly zero social life. I would say that I try to manage my stress as best as I could, reminding myself that I'm fortunate to have a job I like and good medical insurance. However, with my fatigue, I couldn't see myself having a family or a career. I hope you can understand why I often feel hopeless and frustrated because my doctors couldn't figure out why I'm so tired all the time. I don't blame them, medical science is simply not where we want it to be. Right now, my PCP put me on some fibromyalgia medication to see if it works. Another family medicine doctor recommended some Indian herbal supplement from Amazon. My psychiatrist suggested that I see an alt med doctor who was "educated" at Bastyr University because he "heard from some of his patients that this alt med doctor was very thoughtful". BTW all these three doctors are MDs and board certified.
So my question is — after all this, is it OK to suggest to my doctor, that it might be my thyroid? My TSH was 1.6 uIU/ml in 2016 when I was feeling OK and 2.9 uIU/ml in 2018 when I was not doing well, with my free T4 dropping slightly from 1.42 ng/dL to 1.30 ng/dL. I read about the narrower individual variations in thyroid hormones (https://www.ncbi.nlm.nih.gov/pubmed/11889165), but since I don't have any medical training, I don't want to label myself with "subclinical hypothyroidism". I might come off as the type of patients described in some of your posts, but that's because I'm desperate and vulnerable. On the one hand, my fatigue messed up my life and might ruin my future, on the other hand, I don't want to be the patient that makes my doctors cringe. Although I'm trained in science, I can totally understand why people go to the alt med doctors. I myself is very tempted to see the alt med doctor recommended by my psychiatrist. I understand that you don't give medical advice, but am I a "cringe-worthy patient" if I bring up "subclinical hypothyroidism" to my doctor and suggest trying out levo to see if it helps at all, like mentioned in the comment by Katherine? After all, the only way to falsify a hypothesis is to test it in experiments.
Lilyx, I feel for you. I really, really do. After having seen many people over the years with a story similar to yours, I know how utterly frustrating and demoralizing it is to be in your position. When I have seen people with TSHs that have crept up over the years within the normal range, who have negative thyroperoxidase antibodies, I typically tell them that it is unlikely their thyroid is contributing to their problem. Very occasionally, I have tried thyroid hormone anyway, as a way to prove to the patient and myself that we have fully investigated every legitimate endocrine option. If we push the TSH down to where it used to be for that person, and they still don’t feel well, then we can stop thyroid hormone and say we’ve truly ruled the thyroid out as a cause.
Is bringing this idea up with your doctor cringe-worthy? Maybe. It depends on the doctor and how you bring it up. If you printed out your comment and handed it to a caring physician who is not running 30 minutes behind, I’m not sure the reaction would be terrible. Not that I’m saying I would expect a doctor to prescribe it, but a trial of levothyroxine at a low dose for 3-6 months is a fairly low-stakes thing to try, especially if I know that my patient is a reasonable person with reasonable expectations, and is willing to stop the drug if it’s clearly not working.
We must always be mindful that taking a hormone (of any kind) can feel good at first, as it can act as a stimulant if the body doesn’t really need it. The proof of a hormonal therapy working is usually if the effect is durable (lasts at least 6 months), as most stimulant effects will wane within a few months.
Good luck to you.
Thanks a lot for your advice! I’ll prepare a brief summary for my next appointment and bring up the idea if my doctor is not running late. I’ll also try my best not to make her cringe. Really appreciate all the time and effort you have spent on writing this blog, reading our comments and replying!
Would you feel that a tsh thats been close to 1.2 for a long time and then before pregnancy was 3.8 then during pregnancy 1.2 and now 9 months post partum is back up to 3.18. I don’t feel all the symptoms I felt at 3.8 yet which were fatigue, extremely cold even in summer. Periods were starting to be irregular. Currently just having a ton of reaction to high histamine foods (spinach, bananas, bone broth, potatoes, tomatoes) had diahrea for 3 months almost every day. Took out dairy, tested negative for bacterial infections, negative for celiacs. My dr tested thyroid again, I did not ask. Any idea what it could be if it isnt thyroid. My tpo was 300 at the 3.8 tsh and my twin sister has hoshimotos 2 years ago
Just wish I knew what was causing the food problem. Sorry, I feel like a hypochondriac. Just want to feel better. I am nursing too so am worried I’m not getting enough calories with all these food sensitivities.
Thanks for your blog! I’m an epidemiologist who has been battling some physical and mental crises simultaneously. It is very refreshing to read this. It’s real science yet you are clearly thoughtful and consider both the doctor and patient predicament. It is also refreshing to get away from all the pseudoscience and it’s even more frightening how real it looks sometimes.
I also must confess though that I have asked my doctor about my thyroid (though mostly because my family suffers from an extensive endocrine hx). It is so easy to fall on especially with abnormal thyroid imaging… (Mildly enlarged, hyperemic asymmetric with indeterminate nodes even though my TSH and T4 are great.. only thing is through the roof Thyroglobulin antibodies which I’m assured don’t mean much. Do you have a post with information on that one? I suffer from reading so many epidemiological studies, I work myself into circles sometimes. I must confess we make horrible patients. That said, I’m also in that boat where something is most definitely wrong and everything is too complicated to pick apart. I was very very healthy a couple years ago. I actually fell ill after returning from a job on a disaster response team as public health liason (most recently for the Camp Fire). A couple blood clots, esophageal candidiasis that keeps coming back (normal immune workup and don’t get me started with the ridiculous information out there on candida), fluconaze made me pass out from a prolonged QT, tried micafungin through a PICC that clotted then elevated my liver enzymes, then most recently hospitalized for a week after for critical low phosphorus after an iron infusion (it was 1.1). B12 just recently came back low at 137 too when it was fine a month ago. My cholesterol is through the roof (my bmi is 21) I’ve been eating fine. Less appetite, but normal diet. All the standard workup for these extremely unsual problems has come back negative. To top it off now my joints ache, I’m quite short of breath even at rest, I battle constipation and dysphagia. My hair falls out, the beds of my nails are purple, but I actually have hot flashes where my hr will shoot up for no reason. I HATE that I’m the annoying patient who comes in with a long summary now (though arguably much more succinct and accurate than digging through my records at this point). I HATE that I’m having so many tests run, often repeatedly. As a researcher it feels horribly unsystematic to me. My biggest fear is that I am just having a fit after some real health issues. I don’t have a direction to go in and I often feel horrible for taking up so much time. I’ve actually gotten some pretty poor responses and I don’t even feel like I can blame them. I feel especially horrible for my pcp. She’s feels awful that she doesn’t know how to help. I just keep getting referred in circles. And it’s done a number on me mentally. I actually admitted myself to a psychiatric unit for a while this past summer I was so conflicted and so tired. I can hardly contain my emotions any more and it doesn’t help when looking for an answer. I guess I’m conflicted. I don’t want to be annoying. I wonder if I just need to recover… But I’m terrified something serious is being missed. I guess I’m acting like a hypochondriac… But I feel like I have a reason? My doctors think I’m a quack or they don’t know what to do. My inclination is usually to just go back to work, keep on keeping on and just follow up but then something else happens. But it’s gotten to the point where I have had so much workup they really are hesitant to do any more and are starting to think I’m just anxious. All of these are issues get attributed to things. PE/DVT to OCPs or PICC lines (antifungals… About 6mo after the initial PE)), low phos to the the IV iron, low B12 and iron to menstruation/blood thinners. Neurological symptoms to B12. It makes sense but things are piling on. I’m like holy cow there’s no way I could have this bad luck. IBS-C for the constipation and nausea. Dyslipidemia is genetic. SOB and dysphagia still unexplained but my thyroid does appear the be compressing the esophagus on imaging. But they said there’s no reason to biopsy and def no reason to take it out. Its not that enlarged and no distinct nodules… but uncomfortable and painful and food gets stuck there. Steroids and nsaids have not improved this and it’s been nearly a year. I just want this all to be over. Like it’s so odd and so obviously very problematic… But they don’t know whats causing what. Even with some signs of right heart dysfunction now I’m just supposed to keep an eye on it. It’s scary. I’m convinced it’s gotta be endocrine but endocrine workup has been normal. ANA and RF negative as well. Imaging has mostly been normal. Or maybe I had some sort of exposure in California. Or cancer.
I’m coming to terms that doctors aren’t able to do much. That maybe it’s too complicated and I just need to be patient. I try to focus on work or my happiness/therapy instead. But I don’t want to give up. I guess I wonder what is the best way for someone in my situation to push without push back? I’ve had such an extensive workup already and I’m not sure where to start. I’ve been slowly trudging though my own ddx and trying to not be too hard on myself or take it too personally when doctors tell me I’m overthinking things. I know you can’t comment on my issue, but what do you do when even the doctors I’ve seen who I respect tell me to stop worrying so much. Everything looks good now, but physically I’m a mess some of my lab test are trending. Maybe I am just being impatient and worried about something rare and serious because j had some bad stuff happen. Unfortunately, when you tell a doctor you are generically concerned about cancer or systemic disease it goes over even worse than I think it’s my thyroid. They treat the issues as they come in. But medications cause more issues (my hospitalist joked that I get all the rare side effects). It’s maddening. Sometimes I even fear they think they have munchhausens. And I’m like no, I’m just a desperate epidemiologist… Welp. Maybe I am digging too hard. But I don’t want referrals or blind tests which they seem to think I do. I probably can’t fit it all together. I really just want a plan. I want my life back. I feel like they gave up. The more people I see the more I feel like I shoot myself in the foot. And I hate being the person who is always in the office with some new issue.
Gabe, my heart goes out to you, truly. Stories like yours keep me up at night, wondering what it is we (the physicians) may be missing. As for the high Tg antibodies, I believe I touch on those briefly in The Ultimate Guide to Thyroid Function Testing – Hypothyroidism Edition. The bottom line with high Tg Abs is that they are less specific than other types of thyroid antibodies for predicting the risk of developing hypo- or hyperthyroidism. Many people with normal thyroid function have positive Tg Abs, as do people with autoimmune thyroiditis (e.g. Hashimoto’s).
I think there was once a thread in the Comments on one of my posts about crowdsourcing one’s medical situation. I don’t know a whole lot about that arena, and it seems fraught with potential landmines, but when one is desperate, I could understand perusing/using one of the sites that specializes in that.
Thank you for the nice explanation. One small comment to add is that your statement “Said much less pretentiously, the TSH changes by a lot when the T4 only changes by a little” depends on the baseline level of TSH/T4. As you said, the relationship between TSH and T4 is exponential (or logarithmic, depending on which variable is in the x-axis). Your statement is more accurate when T4 levels are low, but less accurate when T4 levels are high. When TSH is at, say, 1 the curve is flatter (if graphing the curve with T4 in the x-axis). At that point, a small change in TSH could create a larger change in T4. If, say, TSH is at 16, a small change in TSH won’t move T4 by much. (Another way of saying this is that derivative of the curve depends on where on the curve you are.)
The implication, as you said, is that people may experience a clinical meaningful effect by moving from TSH=2 to TSH = 1, since that could produce a larger change in T4, which may affect symptoms.
Not a contradiction to any of your statements, but I found TSH/T4 curves while trying to understand what TSH level would be better, and whether aiming for 1 versus 2 makes any sense.
Thank you again for your posts!
I have a thought about the below quote. While it totally makes sense, and sometimes having hashimotos and hypothyroidism can be related to these, why don’t endocrinologists do these tests? Or at least suggest having the person’s PCP do them? Often these issues are still relevant during treatment of hypothyroidism. If someone is still struggling despite “Normal” lab tests, then these should be explored. I really feel like someone with a heavily damaged thyroid is going to have some trouble with the “normal” T4 protocol…similar to how someone who has their thyroid taken out does. Do doctors factor in severity of thyroid damage into their treatment? Since folks without a thyroid often need T3, wouldn’t someone with a totally damaged thyroid be similar?
“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.”
I think you may find this site interesting: https://thyroidpatients.ca/ …Keep an open mind here because this site is science and evidence based, yet critical of the current care thyroid patients are getting. This is probably one of the best out there as it’s mostly looking at facts vice anecdotal evidence.
I know the site below you will have many issues with the discussion (as do I in some cases). However, I think it would be good for an endocrinologist to review this and see if any nuggets in there resonate. I know it’s pretty much the type of stuff you created this website for. However, I would really like to see the leaders in endocrinology and functional/alternative treatments get together a bit more and have honest conversations. Because I feel in between the two we may find the actual truth (until further research is done).
I just found this site and I really appreciate your work and explanations. I am one of those rare cases that had monitored her FT3 before having thyroid problems (my mom was particular about this as her sister died as a consequence of untreated Hashimoto). In 2010 when my thyroid was ok and I was feeling great my levels were: TSH 2.81 ( 1.8-4.2); FT3 2.81 (1.8-4.2); FT4 1.15 (0.89-1.76) . In 2012 I started to have a lot of symptoms and the ultrasound showed a thyroid with low ecogenity, bigger than normal, and inhomogeneous structure. My levels were: TSH 1.3 (0.4 -3.4); FT3 11.1 (7.00-17.00) and FT4: 4.1 (2.7 -5.7). Still normal labs but my thyroid was not OK I took desiccated thyroid for years when I finally found a good dosage- although my hair kept falling with NO dermatological nor male hormones lab reason – aside from that I was feeling great notwithstanding a suppressed TSH (I had thyroid nodules that almost disappeared with therapy). My ultrasound showed again a normal thyroid and no nodules. In 2019 when the company changed the formulation my levels went to TSH 2.18 (0.27-5.3), FT3 3.92 (3.10-6.80) and FT4 10.71 (10.9-22.2). When I tried to progressively stop the medication my body went crazy notwithstanding normal lab tests. Hair loss like crazy, back to dry skin, back to inability to formulate words and thoughts correctly, and now other symptoms weight gain on top of the body, inflamed cysts in the breasts etc. My question to you is: how is it possible that with normal lab tests and normal antibodies I feel like this? If is not the thyroid ( got normal vitamin D, normal liver, normal B12, normal cortisol, only SHBG and estradiol are high) what is it? thank you so much for sharing your thoughts with me.
You asked if in fact thyroid WAS the answer for anyone. I have suffered chronic daily headaches for over 40 years, since elementary school. I have seen many specialists and have a long-term dedicated one who’s tested all of the areas you’ve mentioned as thyroid copycats. Sleep studies, iron and other potential deficiencies, psych evals, nutritionist, etc. I often have low FT4 but low-normal TSH, so endocrinologists insist it’s perfectly normal (and refuse to discuss headaches). However, when put on levothyroxine by neurology or PCP, my headache days plunge. It has far more effect than when I was at my max of 8 daily preventatives.
I can’t find any expert to explain it to me. I’m debating going to functional medicine because endocrinologists won’t even answer my questions, about what happens if I keep up levo treatment (my TSH drops and lowers my body’s T4 production with each dose increase). Something is “off” in my regulatory axis, probably a genetic pre-set rather than a pathology.
So yes, I do think it is thyroid related, and would love to have a traditional MD take the time to explain the pros and cons of trying to fight my body’s pre-set, but since they flat-out refuse to even listen to the question what is a patient to do? I don’t want to believe the neurologist I consulted who said “all endocrinologists are idiots,” however when they won’t even listen to anyone who questions the holiness of the TSH or entertain the idea that hormone levels could impact headaches, it is hard to believe there is any open-mindedness or concern for patient well-being.
If there is a resource out there for someone like me, who can replace multiple daily headache preventatives with a single dose of levothyroxine but can’t get an endocrinologist to explain the ramifications of doing so, please share! I will travel. Otherwise I have nowhere to go but functional medicine. My headache specialist just doesn’t understand hormone treatment well enough to help here.
So yes, despite a dearth of clinical research out there linking hypothyroidism to chronic headache and migraine, I believe as my neurologist (now retired) did… thyroid IS the problem (or the PTH axis).
Regarding the placebo effect, I recommend “Cure” by Jo Marchant. I’d love it if someone could give me some little white sugar pills, convince me they are levo, and get the benefit.
I have had hypothyroidism for 15 years. In that time i have read every book i can get my hands on, every related youtube post and multiple research papers. I have tried every US made levothyroxine and NDT as well as several from overseas. I have had my TSH at .01, .5, 1.0 and 1.5. I have used t4 by itself, ndt by itself and mixed them in a myriad of combinations in order to feel normal again. Nothing has worked! I have seen several Endos and have never gotten any help from any of them. In fact, they have always been the most arrogant and stubborn of all the doctors. The simple truth is that you guys have no idea what your talking about. You accept what is currently believed about the disease and how to treat it as gospel, even though millions don’t feel well. Instead of listening to us and searching for better solutions you just continue to say we are all mentally disturbed in some manner. I think of one great researcher who finally discovered that ulcers were cause by H pylori and not stress, smoking and anxiety like doctors had been telling us for years. Please listen to us and at least consider that you may be wrong. Blaming us doesn’t help.
You are so right, I too have given up on endos , they just follow protocols and have terrible egos. I had total thyroidectomy in 2001 (papillary-follicular cancer) and have recurrent hyperparathyroidism (2020). I have never felt the same, but not one single endo addressed issues like tiredness, brain fog… Just T4 an TSH (no T3 measurement ever counts). You are referring to Barry Marshall and Robin Warren (helicobacter pylori), who were ridiculed for years, in the end however their findings were rewarded with a Nobel prize. There is also the tragic story of dr. Ignaz Semmelweis. It is beyond belief, the way the medical establishment acts.
The question is, when you have gobs of hair coming out in the shower and cold insensitivity (along w other hypothyroid symptoms), but it’s not your thyroid, then what the heck is it? People don’t need to be told it’s hypothyroidism, but they do need an actual diagnosis for SOMETHING. In my experience, doctors are quick to dismiss problems as ‘normal’ without inquiring about what is normal for me or ‘lifestyle’ without asking any actual questions about my lifestyle (or worse, disbelieving my answers if they do ask but don’t get the answers they are expecting). My most extreme example of this is that I once had a doctor tell me my swollen ankle and sudden 10 lbs weight gain (over the course of a few days) was due to my period. I have been having a period for nearly 30 years and know that I only gain 2-3 lbs during my period. He did not ask me about my usual period related weight gain nor inquire about where I currently was in my cycle. When I protested that this didn’t make sense and asked what was up with my ankle, he said I had sprained it. I asked if it was possible to sprain one’s ankle, not remember doing it and also have no pain. He suggested that I sprained it while sleep walking, shrugged his shoulders and left the room. Over the course of the next week, I put on nearly 30 lbs in water weight. I eventually found a doctor willing to run the right tests, had to have a kidney biopsy and learned that I have a rare, autoimmune related kidney disease that requires some pretty gnarley medications. People distrust doctors, in part, because of experiences like this. I think that many doctors don’t like it (I.e. it can ruin their day) when they don’t know what’s going on. Instead of admitting that they don’t know or continuing to work w the patient to figure it out, they blame or dismiss the patient, leaving people feeling angry and running to quacks who will at least take their problems seriously. The doctor-patient relationship is so broken. I wish I knew the fix for it.
Hi, thank you for your disclaimer and your great blog post. I have seen my Dr and gotten tsh and tpo done, as my right side of neck on thyroid is very swollen and I can feel it when I touch, swallow and even see it bulging. I also have horrendous joint pain. My Dr could see and feel it also. Tsh came back at 1 and tpo was less than 28. What do you do in your practice with this type of presentation? I am a 35 year old moderately active lady (I typically like to run several times a week and go on short walks) and I weight 164lbs, about 15-20 lbs over weight at 5’5.5″. Thanks
Without addressing the specifics of your situation, I can say that when I feel an enlargement or mass in what I believe to be the thyroid gland, I do an ultrasound.
Thanks for your reply! I actually was referred to a hematologist because of a slightly low WBC count (3.8). He was concerned about my neck and referred me to an endocrinologist and also ordered more labs to check for lymphoma, and also ordered a thyroid ultrasound, which will be done tomorrow. I’m glad you said what you’d do. I just am still stunned that my GP didn’t seem concerned about my lab results (even after observing my swollen neck and hearing about my pain) until I asked why I still felt awful. Lab results come back and are in range, then boom! Swollen neck no concern. But wbc count was a little low, so I’m grateful he referred me out at least to someone who cared a little more.