Dear Endocrinologists: Time to Hear What Thyroid Patients Have to Say

An Editorial

It's time for endocrinologists to start listening to what thyroid patients have to say.

I've written a letter for thyroid patients to share with family, friends, and coworkers, about what it's like to have a thyroid condition, and what it's like to not be taken seriously by important people in our lives.

But I think it's time to have a similar letter addressed to you, the endocrinologists who many of us consult with for our thyroid care, who conceive of and conduct much of the thyroid research, who write the journal articles, who conduct and attend the professional endocrinology meetings, and who have a huge influence on whether we feel and live well, or face a lifetime of poor health.

As a thyroid patient advocate for almost two decades, here are a few things that I've learned along the way that I hope you'll be willing to hear.

1. Thyroid Disease is Not Easy to Diagnose and Easy to Treat

If thyroid disease were so easy to diagnose and easy to treat, as some of you assert, why would it require a medical specialty -- endocrinology?

The reality is, millions of people in the U.S. alone are undiagnosed, and millions who are undergoing thyroid treatment do not have proper treatment and are therefore not even "euthyroid."

Many of you don't agree on how to interpret even the Thyroid Stimulating Hormone (TSH) test -- the test you call your "gold standard." A patient with a TSH of 3.0 with thyroid antibodies would merit hypothyroidism treatment for some of you, yet some of you won't diagnose hypothyroidism until the TSH rises above the "reference range" (i.e., 4.5 to 6.0), and yet others think that no one should be treated until the TSH exceeds 10.0.

What's easy about that?

Most of you have no idea about how to treat autoimmune diseases like Hashimoto's or Graves' disease. Instead, you treat only the resulting hypothyroidism or hyperthyroidism, not the underlying disease. Many of you are unaware of (or uninterested in) new findings regarding the gluten-free diet, and low-dose naltrexone, and the impact on autoimmune disease itself.

Despite what we now know about the dangers of even subclinical or mild hypothyroidism during pregnancy, you don't routinely test pregnancy women for thyroid disease, nor do many of you monitor a thyroid patient carefully or properly during pregnancy.

New genetic testing and test methodologies like Veracyte Afirma are available to help determine accurately and almost conclusively if nodules are cancerous, yet many of you are not aware of these methods or aren't using these new technologies, resulting in many needless -- and costly -- thyroid surgeries, and a lifetime of hypothyroidism for those unfortunate patients.

Thyroid cancer is one of the few cancers that is actually on the rise in the United States, but rather than looking at this issue intensively, some of you prefer to focus on arguing amongst yourselves about whether the increase is a result of better detection, or reflects an actual increase in disease rates.

The bottom line: thyroid issues are complicated, and little about them is "easy." When you insist on how easy to diagnose and treat thyroid disease is, face-to-face with patients, via the media, or amongst yourselves, you are actually calling your own knowledge and credibility into question.

2. Patients Sometimes Know Best

Unfortunately, some physicians believe that if a person has not gone to medical school, they are incapable of studying, learning, or acquiring legitimate medical knowledge. This attitude carries over into a dismissiveness on the part of some physicians about patients who have questions, theories, and ideas.

As a lay advocate, I've certainly been on the receiving end of this dismissiveness. One recent example comes to mind. Years ago, after my own experience and after hearing from hundreds of patients, I suspected that there was a connection between quitting smoking and the onset of autoimmune thyroid disease.

I wrote about it and contacted all the various thyroid professional organizations looking for more research or investigation into the issue. I was told that this whole idea was ridiculous, and had no basis in reality.

In recent years, researchers finally got around to looking to, and documenting, what we patients already suspected, and for the most part, knew to be true. In some patients, quitting smoking is a trigger factor for the onset of autoimmune disease. (That is not, of course, a reason to continue smoking, but it is a reason for scientists to carefully study the relationship between cigarettes/tobacco and autoimmunity, in a search for better treatments and cures.) Some ingredients in tobacco appear to modulate autoimmunity.

A doctor I know told me that at the 2013 American Thyroid Association meeting, in between various endocrinologists complaining about my websites, my books, and my thyroid advocacy work, one endocrinologist actually mentioned during a presentation that "Mary Shomon was the first person to publicly ask about the link between stopping smoking to the onset of autoimmune thyroid disease." (To that doctor: Thanks for the acknowledgment...and your bravery in saying it in front of other endocrinologists!)

With the rise of the Internet and social media, patient empowerment, and patient evidence-based medicine (PEBM) is a new reality. Evidence-based medicine -- in the form of double-blind, peer-reviewed, journal published research -- is still with us, but there is also power in the collective wisdom of thyroid patients sharing their experiences as well. Thousands of thyroid patients contact me every month, sharing their stories, findings, and frustrations.

Instead of vilifying those of us who are doing our best to communicate, advocate, and empower patients, maybe endocrinologists should spend some time listening to what patients have to say.

3. The Best Thyroid Hormone Replacement is the One That Safely Works Best for You

Many of you have been trained to believe that T4 always converts perfectly into T3 and that the only thyroid hormone replacement medication that any hypothyroid patient needs is synthetic T4 -- levothyroxine.

Some of you are adamantly opposed to the use of T3 drugs -- whether in addition to T4 treatment or as a standalone treatment -- and you refuse to treat patients with anything except levothyroxine.

Some of you have an equal -- or even greater -- disdain for prescription natural desiccated thyroid drugs -- like Nature-throid or Armour Thyroid -- and not only refuse to prescribe them, but actively denigrate them as options for patients, or spread misinformation about them.

Some of you have a somewhat more open viewpoint, and will use T3 treatments, or even natural thyroid drugs, on occasion, when T4-only therapy seems to fail your patients. But you may not share that publicly, fearing derision or criticism from your less open-minded colleagues.

But new studies are showing that some patients do better with the addition of T3 and that natural desiccated thyroid can be an effective alternative to levothyroxine. Instead of a typical knee-jerk reaction of declaring that it's "bad research," or "too small a study" or "It's only the European Journal of Endocrinology," how about taking a close and thoughtful look at the findings, and acknowledging the fact that they are backed up by the experiences of thousands of integrative physicians, and hundreds of thousands of patients testimonials, and realize that you need to get up to speed?

And those of you who are already realizing that T3 and/or natural thyroid truly help some of your patients -- why not have the courage to talk about it openly with colleagues, to participate in research, to do poster presentations, write papers, and be vocal, public advocates for better care for your thyroid patients?

4. Dismissing Our Complaints as Mental Health Problems is Crazy

Anthony Weetman, MD is a British endocrinologist who is known for publicly stating that patients who have "normal thyroid function tests" but who insist they should be treated for thyroid symptoms actually have "somatoform disorders." Which is medicalese for, if an endocrinologist thinks your thyroid tests are "normal" but you don't agree, and you push for treatment, you have a mental health problem.

Sadly, opinions such as Dr. Weetman's are not rare. And the American endocrinology world apparently admires Dr. Weetman so much that the American Thyroid Association even gave him their 2013 Paul Starr Award, saying he is "deservedly recognized for his outstanding accomplishments."

One thing patients do recognize is questionable logic. And by yours, if we fit your test criteria for abnormal thyroid function, we're legitimate thyroid patients deserving of treatment, but if we don't, we have mental health problems.

But how do you justify such a black-and-white attitude, when among yourselves, you don't even agree on the results that actually constitute "normal thyroid function tests?" What is a normal TSH, for example? Is it under 3.0 -- a range you determined was a cutoff for suspicion a number of years ago? Is it under 5.0, the top of the TSH "reference range?" Is it under 10.0 -- the point some of you use as the cutoff for "subclinical" hypothyroidism?" Is a patient "normal" if she/he has thyroid symptoms, and abnormally elevated thyroid peroxidase (TPO) antibodies indicative of autoimmune Hashimoto's disease, but "normal" reference ranges on the TSH test?

If we have obvious thyroid symptoms, and yet fall into one of these mathematical gray areas that are not clearly agreed upon, some of you will willingly diagnose us and treat us, but others of you will equally confidently insist we're suffering from somatoform disorders and refer us to psychiatrists.

Recognizing that you don't agree on any of these crucial issues, the sanest thing a thyroid patient can do is ask questions, look for clarification, and yes, sometimes even push for treatment. And all this insisting that "normal test result" patients are suffering from mental problems when you can't even agree on "normal test results?" Well, ​that's what sounds crazy to most patients.

5. It's Time to Listen

Endocrinologists -- already in short supply, and an increasingly unpopular specialty for new doctors -- are losing thyroid patients to other types of medical practice -- general practitioners, gynecologists, integrative practitioners, osteopathic physicians, and other types of physicians.

Among the empowered thyroid patient community, many of us already sadly consider endocrinologists -- even the ones who identify themselves as "thyroidologists" -- to be technical specialists only -- called upon for diagnosing, testing, and treating structural issues that affect the gland -- goiter, nodules, thyroid biopsies -- and in diagnosing and treating thyroid cancer, Graves' disease, or thyroid storm.

But many of us long ago gave up consulting endocrinologists when the issue is an underlying autoimmune disease that affects the thyroid, or we are struggling to feel well on thyroid hormone replacement treatment. The rigid and dogmatic -- and sometimes, frankly, dismissive -- approach many endocrinologists take with patients who are struggling with Hashimoto's disease and hypothyroidism -- the most common thyroid conditions in the U.S. -- has become an impediment to quality thyroid care, physician-patient relationships, and to the reputation of endocrinology among millions of thyroid patients.

How can this change? The most important step is for endocrinologists to start to truly listen with an open mind -- to patient concerns, to their more open-minded colleagues, to research, to patient experiences.

We also need more endocrinologists to speak up about distortions and derision of thyroid patients -- why, for example, don't we see endocrinologists vocally challenging Dr. Weetman's "somatoform disorders" theory, anti-patient presentations at professional meetings, or other approaches that are inherently disrespectful to thyroid patients?

As Bryant McGill has said: "One of the most sincere forms of respect is actually listening to what another has to say." We've been listening for years, even if we don't always agree. We hope that you will at least meet us half-way.

Live well,

Mary Shomon
Thyroid Patient Advocate 

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