Surprisingly, despite the prevalence of thyroid disease, few endocrinologists choose to focus their work on thyroid diagnosis and treatment. Those who do work with thyroid patients tend to concentrate mainly on handling more acute thyroid situations, such as thyroid cancer, thyroid storm, Graves' disease, hyperthyroidism, nodules and goiter. A small subset of endocrinologists, who want to differentiate themselves, are calling themselves "thyroidologists." Thyroidologists tend to be very traditional endocrinologists.
If you have a suspected or diagnosed thyroid condition, do you need an endocrinologist?
The answer? Many thyroid patients do not need an endocrinologist. I know...it sounds counterintuitive to say this, but for many thyroid patients, an endocrinologist or thyroidologist may not be your best choice, unless you are in an "acute" thyroid situation.
When should you absolutely use an endocrinologist?
First, if you have thyroid cancer, you'll want to see an endocrinologist. Keep in mind that you can't just pick an endocrinologist off a list. You only want one who has expertise in treating thyroid cancer patients. Since thyroid cancer is not especially common -- an estimated 40,000 cases a year are diagnosed in the U.S. -- many endocrinologists may never have even diagnosed or treated thyroid cancer. (A good source to find physicians who specialize in diagnosing and treating thyroid cancer is the Thyroid Cancer Survivors' Association).
Second, if you have acute Graves' disease, thyroid nodules, or a goiter -- 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. (Note: when you need to have surgery to remove all or part of your thyroid, choose a surgeon who is an expert in thyroid surgery. Keep in mind that many ear/nose/throat and general surgeons are not considered thyroid surgery experts; and you'll want a surgeon who does dozens of thyroid surgeries a year, at minimum. For more information, read Finding a Top Thyroid Surgeon.)
Third, if you are pregnant and you have Graves' disease/hyperthyroidism, or you have a newborn or young child diagnosed with a thyroid disorder, see an endocrinologist. It's especially important to manage an overactive thyroid during pregnancy -- because poor treatment can result in problems for the newborn. And managing thyroid issues in newborns and young children is better handled by an endocrinologist and not something that should typically be left to a pediatrician.
When should you consider a doctor beyond an endocrinologist?
If you have a "harder to diagnose" thyroid imbalance, autoimmune thyroid disease like Hashimoto's, subclinical/borderline thyroid disease, a "normal" TSH but thyroid symptoms, or you're being treated for hypothyroidism but you still don't feel well, most endocrinologists are probably not the best fit for you. Why?
Let's take a look.
To start, we have a severe and worsening nationwide 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, thyroid nodules, etc. -- who realistically should be seen by an endocrinologist. That's one endocrinologist for every 25,000 people who need one. And, only 150 or so new endocrinologists are coming out of specialty training each year.
Given such a shortage, most endocrinologists do not have the time to do time-consuming detective work, or trial-and-error treatment protocols, with patients who do not have what the doctors consider to be a "life-threatening" thyroid conditions. That means that patients who have conditions like Hashimoto's, or who are being treated for hypothyroidism but still experiencing symptoms, are often considered to be lower priority by endocrinologists. (This is not to say that Hashimoto's and hypothyroidism are not debilitating and worthy of serious attention. Endocrinologists, however, do not consider them to be acute or high-level thyroid conditions, and given the lengthy waiting lists of patients with diabetes and acute thyroid problems, some endocrinologists have said outright that Hashimoto's and hypothyroidism don't warrant a specialist.)
Access is also a major consideration. You'll often have to wait months to get an appointment with an endocrinologist. Even then, your appointment is likely to last only a few minutes. (In some cases, you may be seen by a physician's assistant, and never see the endocrinologist personally.) If you do get to see the doctor directly, some endocrinologists will, unfortunately, make it clear that you are "wasting their time" if you are coming to them with borderline thyroid test levels, or a "normal" TSH test but continuing symptoms. Most endocrinologists tend to strictly follow the official treatment approaches of their professional organizations, so you are likely to be diagnosed and treated according to the treatment guidelines of, for example, the American Association of Clinical Endocrinologists (AACE).