Doctors Threatened by Knowledgeable Thyroid Patients

Some doctors, endocrinologists and thyroidologists are threatened by informed, empowered thyroid patients and advocates.

I was talking with a reporter one day, who was interviewing some doctors for an article on thyroid disease. The reporter said that one mainstream endocrinologist declared: "Mary Shomon is crazy." The reporter was a bit confused as to why a doctor would suggest such a thing. (It's safe to say that some thyroid patients reading this will also have doctors who don't have especially kind things to say about me!)

It's not a surprise to me. 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. His title? "The Top Ten Signs You Have a Crazy Thyroid Patient on Your Hands." "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 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.

But let's take a look at some of the reasons why some healthare are quick to demean knowledgeable thyroid patients, and why some of them seem to have such a problem with me, this website, and my books, guides and newsletters.

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 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 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.

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  don't fit the "TSH is normal, you're fine" treatment model. These people are NOT easy to treat.

What ELSE can conventional practitioners do? The only tool most of them have is levothyroxine. So they can tweak your dose up or down a bit, maybe change from one levothyroxine brand to another. But otherwise, many simply declare that any symptoms or problems you still have are "not related to your thyroid," and send you on your way.

There are innovative, enlightened doctors, including a small subsection of endocrinologists, who do in fact understand the process of diagnosing and treating thyroid patients. They recognize:

  • Different patients feel better at different TSH levels
  • Free T4, Free T3 and thyroid antibodies testing and evaluation may reveal information that can help make a thyroid diagnosis and fine-tune treatment
  • Some patients may do better on a brand of levothyroxine besides the market leader Synthroid
  • Some patients may require the addition of T3 (via Cytomel, compounded T3, or using the T4/T3 drug Thyrolar)
  • Some patients may feel their best on natural desiccated thyroid, such as Armour or Nature-Throid

Those practitioners, unlike their more narrow-minded colleagues, DO have options and tools to work with, so they don't have to take a one-size-fits-all approach to thyroid treatment.

I champion those doctors who want their thyroid patients to feel and live well -- not just test "normal." I also dare to suggest that there are thyroid treatment options, options patients should ask their doctors to discuss.

3. Some doctors have financial incentives to prescribe and support Synthroid, versus other thyroid hormone replacement options.

Synthroid is one of the top five selling drugs in the U.S., and is a consistently profitable drug for its manufacturer. The drug has always been heavily marketed by an army of pharmaceutical sales representatives, and its manufacturer.

The American Thyroid Association and American Academy of Clinical Endocrinologists, and many individual physicians all have a history of receiving substantial funding from Synthroid's manufacturer.

Since 1997, I have been actively covering the various scandals and issues involving Synthroid -- including the suppression of research about Synthroid, ultimately published in 1997, the resulting class action suit, the overcharging for the drug, the failure of Synthroid to meet the FDA's deadline for approval of the new drug application for levothyroxine, and other concerns.

I've educated patients that there are other brands of levothyroxine, that are equal to, and at certain times better, than Synthroid. I've let patients know that some patients may not feel well on just levothyroxine, and instead require the addition of T3 (via Cytomel, compounded T3, or using the T4/T3 drug Thyrolar -- drugs NOT made by Synthroid's manufacturer). And I've helped educate patients regarding the fact that some may feel their best on natural desiccated thyroid, such as Armour and Nature-Throid. I don't have it out for Synthroid -- it works fine for some thyroid patients. But I do want thyroid patients to know the facts, and to know they have other options.

By making sure that the public knows the full story about this profitable drug and its pervasive influence, I am exposing a questionable practice, and vulnerability, of many doctors who treat thyroid patients.

4. Some doctors look down on self-educated patients.

The bottom line: Educated, informed patients take more time. These patients read the latest journals -- which means that the doctor also needs to read the latest literature -- or risk being less current and less informed than the patient. We make WORK for some doctors!

And here I am, encouraging you to become a "Googler." I link to and summarize research articles. I report on the latest from medical journals.  I encourage you to think about how you feel, and use resources available to you, to ensure your thyroid treatment is optimized for your wellness, not just your numbers.

What Do I Think is Crazy?

So we've looked at some of the issues that could make some endocrinologists feel  threatened -- even seemingly unhinged -- by knowledgeable thyroid patients.

But here are some issues to consider.

  • Many doctors spend only a few hours studying the thyroid in medical school, less time than they spend on conditions that are far less common.
  • Some doctors get the bulk of their current knowledge about thyroid disease from pharmaceutical company advertisements and drug representatives.
  • Your doctor is more likely to give you a prescription for an antidepressant than a thyroid test.
  • Doctors who call the TSH test the "gold standard" for thyroid diagnosis and treatment can't even agree on a normal range for the TSH test -- and have been arguing and debating about it for more than a decade, while patients suffer.
  • There are so-called thyroid experts who actually believe, and publish articles claiming that thyroid patients who test "normal" but still don't feel well have mental health problems.
  • There are still "fertility experts" who put women through expensive and difficult cycles of assisted reproduction and in vitro fertilization, yet they've never done a thyroid test on the supposedly infertile woman.
  • Some self-proclaimed "real thyroid experts"  have adopted an especially dogmatic and unscientific approach to thyroid diagnosis and treatment that cherry picks research to support their opinions, and selectively ignores medical research that could help thyroid patients.
  • Some doctors ignore clinical thyroid signs, medical history, patient symptoms, and their own common sense, and instead rely solely on the results of blood tests, in order to diagnose patients.
  • Some practitioners ignore obvious symptoms and refuse to test some people for thyroid conditions, based on their own ignorance, arrogance, or financial motivations.
  • Tesearch protocols studying the use of T3 keep using the wrong amounts and type of T3, and then, not surprisingly, declare T3 not to be a useful treatment.
  • Some doctors routinely dismiss the use of natural desiccated thyroid, yet will not study why some patients feel better and do better -- and are even able to maintain normal lab values -- using a medication that some condemn as outdated.
  • We have an epidemic of obesity, and no one is looking carefully and closely at the possibly linkage to thyroid disease. Why? Because they don't recognize the role of the thyroid in metabolism and weight gain.

I think it's crazy that endocrinologists have the time to make fun of thyroid patients, when by their own admission, nearly half of all thyroid patients in the U.S. are undiagnosed, and almost half of those who ARE diagnosed and treated do NOT have "normal TSH" levels, indicating poor treatment protocols.

How about a little less time joking around, guys, and more time hitting the books?

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