The truth? Most thyroid patients do not need an endocrinologist. I know...it sounds counterintuitive to say this, but for most thyroid patients, an endocrinologist or thyroidologist should probably NOT be your thyroid doctor, unless you are in several special situations.
So, when should you use an endocrinologist?
First, if you have thyroid cancer, yes, you'll want to see an endocrinologist -- but only one who has ongoing and known expertise in treating thyroid cancer patients. Since many endocrinologists specialize primarily in diabetes, some rarely see thyroid cancer cases, and they're not knowledgeable about diagnosis and treatment. Don't assume that any endocrinologist will do. (A good source to find physicians who specialize in thyroid cancer is the Thyroid Cancer Survivors' Association).
Second, if you have acute Graves' disease, suspicious thyroid nodules, or a goiter -- yes, you'll want to see an endocrinologist. But again -- not just any endocrinologist will do. You'll need one who has specific expertise in treating thyroid patients. You do not want a diabetes specialist who handles a thyroid patient here and there on the side. Here, I'd suggest the American Thyroid Association "Find a Specialist" directory, or the endocrinologists listed in the Thyroid Top Docs Directory.
But if you have a "harder to diagnose" thyroid imbalance, autoimmune thyroid disease, subclinical thyroid disease, "normal" TSH but a thyroid history and symptoms, or you've already been diagnosed and treated but you still don't feel well, most endocrinologists are not for you. Why? Let's be honest here.
We have a severe and worsening shortage of endocrinologists. Right now, there are an estimated 4,000 endocrinologists in the United States who are serving as many as 100 million Americans -- with diabetes, fertility problems, polycystic ovary syndrome, osteoporosis, Graves' disease, thyroid cancer, etc. -- who reasonably need to be seen by an endocrinologist. That's one endocrinologist for every 25,000 people who need one.
Given such a shortage, most endocrinologists simply do not have the time -- much less the inclination -- to do time-consuming detective work with patients who do not have life-threatening thyroid conditions. (Please understand that I'm not suggesting that our thyroid issues aren't debilitating and entirely worthy of serious attention and in need of diagnosis and treatment. I'm trying to help explain how many endocrinologists view it!)
To get in to see an endocrinologist, you'll often have to wait months to get an appointment. And even then, your appointment will likely last just a few minutes. (Or you may find that you are passed off to a physician's assistant, and never even get to see the doctor.) If you do get face time with the doctor, some endocrinologists will, unfortunately, make it clear that you are "wasting their time" if you are coming to them with borderline test results, or a "normal" TSH test but continuing symptoms. At best, you might get a cookie-cutter official approach, as outlined by the American Association of Clinical Endocrinologists (AACE), which says that keeping the thyroid in balance requires only "three easy steps" -- testing using the TSH test, prescribing levothyroxine so the patient is in the "normal range" (of course, which "normal range" they adhere to is up in the air), and following up with a TSH test every 6 to 12 months.
My advice as a patient advocate? If you have thyroid cancer, nodules, goiter, or acute Graves' disease, find a great endocrinologist. Otherwise, you're likely to be best served by a doctor who specializes in hormonal medicine, a holistic doctor who works with difficult-to-diagnose disease (like thyroid, autoimmune, chronic fatigue), a psychopharmacologist (they tend to be adept at subtle thyroid diagnoses), or an integrative physician.
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