It's not a surprise to me, however. A subsection of doctors -- especially endocrinologists and self-proclaimed "thyroidologists" -- appear to be particularly upset and threatened by my efforts to educate and empower thyroid patients.
Nowhere was this more evident to me than when a prominent endocrinologist, who was also an official with the American Association of Clinical Endocrinologists, did an opening presentation at one of the group's annual conferences. He stood in front of an audience of his fellow endocrinologists, and to start off the session, fired up his PowerPoint screen, and on it was his own David Letterman "Top 10" style list. His title? "The Top Ten Signs You Have a Crazy Thyroid Patient on Your Hands." (Isn't it comforting to know that when the endocrinology community gets together for educational sessions, they start out by making fun of patients?) In any case, "She walks in carrying a copy of one of Mary Shomon's books" was actually number 2 on the list!
Hearing that doctors say I'm "crazy," and the patients who are informed, educated and empowered by information they get from me are also crazy is, well, in some ways, the BEST thing anyone could tell me. Because that means that I'm doing my job as a patient advocate! It means that patients are getting the message, and they are walking in to appointments armed with information and questions, and are less afraid to insist on better thyroid care. And it means that this effort is being noticed by the doctors and endocrinologists...even if they aren't welcoming it.
But let's take a look at some of the reasons why some doctors, endocrinologists and self-proclaimed "thyroidologists" are so quick to attack and demean empowered and knowledgeable thyroid patients, and why some of them seem to have such a problem with me, this website, and my books, guides and newsletters that are in the hands of hundreds of thousands of thyroid patients around the nation and the world.
1. Endocrinology is a specialty that can attract "accountant" personalities -- people who tend to view you as a "lab value."
If practiced properly, endocrinology is a specialty that actually requires great finesse and subtlety, people skills, and the ability to integrate, understand and apply the complicated workings of the endocrine and hormonal systems. Unfortunately, many practitioners are not practicing endocrinology properly or well. Rather than attracting warm, people-oriented personalities, it has often attracted just the opposite, producing endocrinologists who view things in a very rigid, very black and white manner. I call them, not positively, the "accountants" of medicine, because endocrinologists frequently prefer to focus on diagnosing and managing by numbers, rather than treating patients. In diabetes, for example, which many endocrinologists tend to emphasize in their practices, blood sugar and insulin levels are measured, and drugs are given to keep the numbers "normal." Symptoms, and how patients feel, are often secondary to the numbers. In thyroid disease, TSH levels are measured, and drugs and treatments are given to keep the numbers "normal." The idea is, if the numbers are okay, the patient is okay.
But, despite some endocrinologists' protests, it is rarely that simple. My motto as a patient advocate has always been "We're patients...NOT lab values!" This idea that patients deserve to feel well, not just have normal numbers, is, however, the direct opposite of the prevailing "your lab values are normal, therefore you're fine" approach to thyroid diagnosis and treatment that many doctors practice. No wonder some doctors think I'm crazy! I'm directly contradicting their core philosophy.
2. Many doctors don't know what to do to help patients besides giving levothyroxine. And, it's easier to just do the minimum.
In a study of Graves' disease patients post-RAI treatment, a Thyroid Foundation of America found that the majority of patients studied did not feel well, despite being treated to "euthyroid" status (normal TSH range). My 2003 quality of life study -- the first of its kind ever conducted among a substantial number of thyroid patients (the survey population was almost 1000 patients) -- found that more than 50% of patients were not satisfied with their treatment, and more than 90% complained of still feeling fatigued, and almost 65% finding weight loss difficult or impossible. More than half of all patients had difficulty concentrating, a feeling like their mind was in a "fog," reduced or nonexistent sex drive, inappropriate weight gain, pains/aches/stiffness in joints, and forgetfulness.
Interestingly, these are the same patients who many doctors declare "easy to treat." Yes, it's easy to treat when "treatment" consists of a 5 minute visit, dismissing any symptoms as unrelated to the thyroid problem, having a nurse draw blood, sending the blood out for a TSH test, filling out a prescription pad, and sending the patient away with instructions to come back in a year.
Thyroid patients who have "normal" TSH tests but who complain of continued fatigue, weight problems, depression, aches, pains, hair problems, skin problems, infertility...well, they don't fit the "TSH is normal, you're fine" treatment model. These people are NOT easy to treat. So, the answer then becomes: "It's not related to your thyroid." Even if you never had these problems before your thyroid condition was diagnosed, and now you do: "It's not related to your thyroid." Even if these are all symptoms of a thyroid condition: "It's not related to your thyroid."