Thyroid Disease: One Size Does Not Fit All

one size doesn't fit all

As a thyroid patient advocate for almost two decades, when it comes to thyroid advice, one thing I've probably said the most is "one size does not fit all." So what does that really mean when it comes to thyroid issues?

Thyroid Disease As a Concept

First, it means that "one size fits all" does not apply to the concept of "thyroid disease" in general. Hyperthyroidism—an overactive thyroid—is often accompanied by anxiety and weight loss.

Hyperthyroidism can be borderline/subclinical, or it can be so severe as to trigger life-threatening thyroid storm. Hypothyroidism—an underactive thyroid—is frequently characterized by weight gain, fatigue, and depression. For some people, hypothyroidism is a mild annoyance that is easily treated. For others, it's a debilitating, life-changing chronic disease that is difficult to treat. Goiter or nodules can be small, very slow-growing, and asymptomatic, or fast-growing, and interfere with breathing and swallowing. Thyroid cancer is often diagnosed without any symptoms. With thyroid cancer, the prognosis for a small, encapsulated, papillary thyroid cancer is almost universally excellent—but advanced medullary or anaplastic thyroid cancers are difficult to treat and can be fatal. And for some patients, they are out of the hospital the day after a thyroid surgery, while others have complications, laryngeal nerve damage, and longer recovery periods.

The point is, while we group many various conditions—hypothyroidism, hyperthyroidism, Hashimoto's disease, Graves' disease, thyroiditis, goiter, thyroid nodules, and thyroid cancer—under the umbrella term "thyroid disease," they are in fact very different.

Thyroid Disease Diagnosis

Second, while this puts me at odds with some conventional endocrinologists, it's clear to me—and to many patients and practitioners—that "one size does not fit all" when diagnosing thyroid disease.

The official "guidelines" for diagnosing an overactive or underactive thyroid problems, for example, rely almost solely on the Thyroid Stimulating Hormone (TSH) test. In a nutshell, the conventional wisdom is that a TSH above 5.0 is "subclinical hypothyroidism" (that may or may not warrant treatment) and a TSH above 10.0 constitutes overt hypothyroidism and warrants treatment. A TSH below .5 is hyperthyroid, and may warrant treatment. End of discussion. This one-size-fits-all approach cookie-cutter approach is leaving millions undiagnosed—the American Thyroid Association estimates that 12 million Americans have undiagnosed thyroid conditions.

Even among conventional endocrinologists who consider the TSH the "gold standard," there is still a great degree of variability in how thyroid disease is diagnosed. Some of these physicians consider the reference range for the TSH test to be narrower, and diagnose and treat according to that narrower range. In fact, this topic has been the subject of controversy for more than a decade. Some physicians do look for the underlying disease that may be the cause of a thyroid imbalance, and run thyroid antibodies tests to identify Hashimoto's disease and Graves' disease, which can cause symptoms before the TSH, T4 and T3 levels reflect a thyroid dysfunction.

There is also evidence that treating "euthyroid" autoimmune Hashimoto's disease—as evidenced by normal TSH levels, but elevated thyroid peroxidase (TPO) antibodies—may help prevent progression to overt hypothyroidism.

From the imaging standpoint, some physicians also routinely order a thyroid ultrasound for anyone with autoimmune thyroid disease, to look for goiter (an enlarged thyroid), irregularity in the thyroid gland, or the presence of thyroid nodules.

Integrative physicians and hormone experts frequently use a much more complex approach to diagnosing thyroid issues, one that recognizes that the TSH test may sometimes be imperfect (due to test conditions, storage, and timing), and that measuring a pituitary hormone like TSH does not necessarily reflect the actual circulating thyroid hormones (thyroxine/T4 and triiodothyronine/T3) whose excesses or deficiencies cause symptoms.

To that end, they test for Free T4 and Free T3 to measure the unbound, available amounts of these thyroid hormones. Many practitioners also include thyroid antibodies tests to detect autoimmune disease. Some practitioners also include the Reverse T3 test, to evaluate the amount of inactive T3 in the bloodstream, which may block the body's ability to properly use T3.

When it comes to identifying a thyroid nodule that may be cancerous, some cutting-edge practitioners use the Veracyte Afirma Thyroid Analysis process, which can provide a definitive assessment of whether a nodule is cancerous or not. Others rely on the more traditional fine needle aspiration (FNA) biopsy process, which has higher inconclusive or indeterminate rates. Often, these inconclusive nodules end up with the patient having an unnecessary full thyroidectomy and lifelong hypothyroidism because the pathology shows there was no thyroid cancer.

On the alternative front, there is an unhelpful tendency toward a one-size fits all approach to the diagnosis of thyroid disease with some practitioners. For example, some holistic, integrative and alternative practitioners haphazardly diagnose thyroid disease—in particular, hypothyroidism—without blood tests, a medical history, or even a clinical thyroid examination. Some rely on inconclusive checks like "basal body temperature," ridiculous tests like painting iodine on a patient's arm, or claim that anyone with fatigue and weight gain must be hypothyroid. And the idea that everyone who is tired or overweight is hypothyroid—irrespective of blood tests—is a "one-size-fits-all" idea from the alternative medicine world that doesn't serve patients, or the credibility of these practitioners.

Thyroid Disease Treatment

Third, as for treatments, this is an area where one size definitely not does not fit all, no matter how hard the experts try to make it so. For Graves' disease and hyperthyroidism, endocrinologists in the U.S. often "rush to RAI"—recommending radioactive iodine (RAI) ablation, a treatment that permanently disables the thyroid gland, and leaves the patient hypothyroid for life. More open-minded practitioners look at the severity of the disease, the symptoms, and the patient's history, and are more likely to include the option of antithyroid drugs—especially methimazole (Tapazole)—as an option. A percentage of patients taking antithyroid drugs have a temporary or permanent remission from Graves' disease, and don't require RAI or surgery, and don't become hypothyroid. On the holistic and integrative front, some practitioners are having success with supplements that slow down the thyroid or modulate the immune system, dietary changes (such as the gluten-free diet), and even off-label, low-dose use of drugs like naltrexone, which has been shown to lower antibodies in some thyroid patients.

For thyroid cancer, there is also a difference in terms of treatments. A typical course for most thyroid cancer is surgical removal of the entire gland, followed by radioactive ablation, suppressive, higher-dose thyroid hormone replacement, and periodic scans—off the thyroid medication—to detect a recurrence. But increasingly, for very small, encapsulated thyroid cancers, some practitioners are advising a "wait and see" monitoring approach, rather than the more invasive thyroidectomy. Or, depending on the nature and extent of the cancer, thyroidectomy is performed, but radioactive iodine ablation is not done. There are also differing ideas on whether suppressive doses of thyroid medication are needed, or how often scans are needed to evaluate for a recurrence of the cancer.

Nowhere is the "one size fits all" idea more evident than in treatment for hypothyroidism. The standard one-size-fits-all guidelines dictate levothyroxine (synthetic T4) treatment to restore a patient to the "normal reference range." But even within this narrowest of treatment regimens, there are differences. Some practitioners prefer that patients use only a brand name levothyroxine (like Synthroid, Levoxyl, Levothroid, etc.) and others feel that the drugs are for the most part interchangeable. Many practitioners are not aware of a new brand of levothyroxine, Tirosint, which is a hypoallergenic liquid form of levothyroxine in a capsule that is thought to be better absorbed than tablets. As for the dosage, some practitioners medicate their patients with a goal of reaching the middle of the TSH reference range, some believe patients do best at the lower end of the range, and others claim that the controversial risk of osteoporosis warrants keeping patients at the top end of the reference range.

On the integrative front, practitioners tend to be much more open to the range of prescription alternatives—including T3 and natural thyroid—to treat hypothyroidism. Many consider the best form of thyroid hormone replacement to be the one that safely works best for each patient. That means that patients may be prescribed:

  • Levothyroxine drugs
  • Levothyroxine with the addition of synthetic T3 (liothyronine, brand name Cytomel)
  • Levothyroxine with the addition of natural desiccated thyroid (i.e., Armour Thyroid, Nature-Throid, or generic natural thyroid)
  • Natural desiccated thyroid drugs (i.e., Armour Thyroid, Nature-Throid, or generic natural thyroid)
  • Natural desiccated thyroid drugs (i.e., Armour Thyroid, Nature-Throid, or generic natural thyroid), with the addition of synthetic T3 (liothyronine, brand name Cytomel)
  • A straight T3 regimen—liothyronine (brand name Cytomel), or compounded
  • A compounded custom formulation that includes any of the above drugs

Integrative practitioners also frequently test for and treat other deficiencies—including ferritin and Vitamin D for example—that may affect the thyroid or immune system. Some practitioners are having success with supplements that lower antibodies or modulate the immune system (i.e., selenium, anatabine), dietary changes (such as the gluten-free diet), and even off-label, low-dose use of drugs like naltrexone, which has been shown to lower antibodies and achieve remission from Hashimoto's in some thyroid patients.

The "one size fits all" mantra does have an unwelcome foothold among some holistic and integrative practitioners and some patients, however. For example, some practitioners automatically tell anyone with a thyroid condition—irrespective of the type of problem—that they need to supplement with iodine, sometimes even megadoses of iodine. While iodine is a building block of thyroid hormone, giving iodine to some thyroid patients can actually significantly worsen their condition.

Some of the other "one size fits all" assertions that practitioners and patients claim include:

  • All synthetic thyroid drugs are bad/dangerous/ineffective
  • All hypothyroid patients will only do well on natural desiccated thyroid drugs
  • Everyone who is hypothyroid also has adrenal insufficiency
  • Everyone who is hypothyroid should be taking prescription cortisol for the adrenals
  • Everyone who is hypothyroid should be on a gluten-free diet
  • Everyone who is hypothyroid has candida overgrowth/candidiasis
  • Everyone who is hypothyroid has toxic levels of metals (i.e., mercury)
  • Everyone who is hypothyroid should have mercury fillings removed
  • Everyone who is hypothyroid has digestive/gut issues
  • Everyone who is hypothyroid should do coffee enemas
  • Everyone who has chronic fatigue syndrome or fibromyalgia is hypothyroid

This list is just the tip of the iceberg. The truth is that each person has his/her own combination of underlying factors and issues, and, again, when it comes to thyroid disease diagnosis, treatment, and related issues, ONE SIZE DOES NOT FIT ALL! What works for one patient does not necessarily work for another.

Key Point

Remember: Anyone or anything—whether it's a board-certified endocrinologist, an integrative MD, chiropractor, vitamin store clerk, herbalist, a patient advocate, a Twitter feed, a book, a blog, a webinar, a celebrity, a magazine article, the "Latest Thyroid Cure" video or ebook, or even your best friend—claiming to have one diagnostic approach, one proven answer, one amazing solution, one cure, one supplement, one miracle diet, one diet plan, one food, or one medication that works for everyone is, simply, wrong. Because when it comes to thyroid disease, one size does not fit all.