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?
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