10 Key Challenges of Living With Thyroid Disease

thyroid challenges, thyroid treatment, thyroid patients
Terry Vine / Getty Images

Doctors may repeatedly say that thyroid disease is "easy to diagnose, easy to treat," or that "thyroid cancer is the good cancer," but thyroid patients know that there are challenges inherent to living with thyroid disease. Let's take a look at 10 key challenges you may face in living with thyroid disease.

1. Knowing All Your Hypothyroidism Treatment Options

Whether you have radioactive iodine (RAI) for Graves’ disease, a thyroidectomy for thyroid cancer, or Hashimoto’s thyroiditis, you will almost always end up hypothyroid, which requires taking thyroid hormone replacement medication.

A key challenge, however, is in knowing that there are treatment options. Conventional physicians and endocrinologists often tell patients that there is only one treatment option: levothyroxine, the synthetic form of the T4 hormone. Brand names include Synthroid, Levoxyl, and Tirosint. There are, however, other medications and combinations that are also safe and effective options for hypothyroidism. You are not likely to hear about these options from most conventional physicians, however. These other treatment options include:

  • Levothyroxine plus T3 therapy, adding liothyronine (brand name is Cytomel), a synthetic form of T3, or a time-released compounded prescription liothyronine
  • Levothyroxine plus natural desiccated thyroid (NDT). NDT is a prescription thyroid created from the dried thyroid glands of pigs, and has been on the market for more than a century as a hypothyroidism treatment. It includes natural forms of both the T4 and T3 hormones. Some brand names include Nature-Throid and Armour Thyroid.
  • NDT-only therapy

On the nutritional front, there is also evidence that in a subset of people who still have a thyroid gland, but also have celiac disease, completely eliminating gluten from the diet may put their thyroid disease into remission, resolve symptoms, and eliminate the need for thyroid medication.

Testing for celiac disease and gluten intolerance is not typically done by most conventional physicians or endocrinologists.

2. Knowing All Your Graves’ Disease/Hyperthyroidism Treatment Options

When you are diagnosed with Graves’ disease or hyperthyroidism, the tendency of many doctors in the U.S. is to immediately recommend that you have radioactive iodine ablation (RAI) treatment. Some practitioners call this the “Rush to RAI.”

RAI treatment involves taking a dose of radioactive iodine, which concentrates in your thyroid and destroys it, resolving your hyperthyroidism. RAI, however, usually results in lifelong hypothyroidism and the resulting need for thyroid hormone replacement medication.

Outside the U.S., however, doctors are more likely to try antithyroid drugs, which slow down your thyroid without permanently destroying it. Because as many as 30 percent of Graves’ disease and hyperthyroidism patients go into remission on antithyroid drugs, doctors outside the U.S. typically use drug treatment as a first-line therapy and recommend RAI if there is an allergy or sensitivity to the drugs, or the drugs are not effective at resolving the hyperthyroidism.

Some Graves’ disease and hyperthyroidism patients in the US are never told that antithyroid drugs are an option.

They are presented with RAI as the only treatment.

Another issue is that for women of childbearing age, RAI is not recommended if you are planning to get pregnant in the next year. Experts recommend you wait at least a year after RAI before getting pregnant, or even longer if you need to get stabilized on thyroid medication.

Outside of the U.S., RAI is rarely performed on any women of childbearing age, for just that reason. Instead, surgical removal of the thyroid is routinely recommended.

Again, however, in the U.S., many women are not counseled by their physicians that if they hope to become pregnant in the next year, surgery may be a better option and that once their thyroid hormone replacement is stabilized, they can safely become pregnant, rather than waiting.

3. Finding the Right Doctors

One of the main challenges you may face is finding the right doctor for your thyroid care. When you have Graves’ disease or hyperthyroidism, thyroid nodules, or thyroid cancer, you will typically need to consult an endocrinologist. But many endocrinologists specialize in diabetes and have limited ongoing expertise in diagnosing and managing thyroid patients.

So, the subset of endocrinologists who specialize in thyroid disease is very small. Similarly, when you have Hashimoto’s thyroiditis or are managing ongoing hypothyroidism, you may find that primary care doctors or internists take a strictly conventional approach, and offer limited treatment options. Two resources to help you overcome this challenge:

4. A Shortage of Endocrinologists

Endocrinologists specialize in managing endocrine diseases including diabetes—which is reaching epidemic proportions in the U.S.— as well as conditions that include infertility and reproductive problems, polycystic ovary syndrome, menopause, osteoporosis, growth hormone deficiencies, and of course, thyroid disease. In the U.S., we have a massive shortage of endocrinologists.

Some surveys estimate that there is only one endocrinologist for thousands of people with conditions that fall within the purview of endocrinologists. Waiting lists to see endocrinologists can range from weeks to many months—If you can even get in at all. The fact is that there simply aren’t enough endocrinologists to serve everyone with a thyroid condition. Even then, many endocrinologists have narrow specializations, and focus primarily on diabetic patients, or reproductive endocrinology, and don’t take thyroid patients. While endocrinologists are usually not essential for diagnosis and treatment of Hashimoto’s disease and hypothyroidism, they are essential for complex situations such as Graves’ disease, thyroid nodules, and thyroid cancer.

5. Coping With Fatigue

One of the most common complaints of thyroid patients—whether hypothyroid or hyperthyroid—is unrelenting and persistent fatigue. The fatigue can be debilitating and is often unrelieved by extra sleep or rest. Fatigue is especially common if your hypothyroidism is poorly treated or undermedicated, or if you are hyperthyroid and experiencing insomnia and restlessness. There are, however, solutions to this challenge.

6. Managing Your Weight

A substantial percentage of people who are hypothyroid end up with extra weight that is difficult—and sometimes seemingly impossible—to lose. This is one of the chief complaints of many people with thyroid conditions: that no manner of calorie cutting, dietary changes, or rigorous exercise is able to move the scale in the right direction.

There are a number of factors that can make weight more difficult for thyroid patients, including:

  • Being poorly treated or undermedicated for hypothyroidism
  • A slowed metabolism or higher weight set point, even after treatment
  • An increased risk of insulin resistance and metabolic syndrome
  • Less energy, which translates to less exercise and fewer calories burned
  • Hormonal changes that make you more effective at storing fat and less effective at burning it

There are solutions for weight-challenged thyroid patients.

7. Dealing With Thyroid-Related Mood Changes

Undiagnosed, undertreated, and overtreated thyroid disease can cause a laundry list of mood and mental health symptoms. Depression, brain fog, memory problems, panic attacks, and anxiety can all be related to your thyroid. You may have symptoms that affect your mood and interfere with your ability to function effectively.

These symptoms can pose a challenge when you are trying to get a diagnosis, as some doctors will hand you prescriptions for antidepressants or antianxiety medications instead of a lab order for a thyroid panel. Even with treatment, you may still have some of these mood-related symptoms that are triggered by your thyroid.

Ideally, a key solution is to have optimal treatment of your thyroid condition. In some cases, antidepressant or antianxiety medication may help. But don’t overlook the benefits of other practices, some of which are outlined by integrative psychologist Dr. Jan Nicholson.

You may also find some relief of depression and anxiety by incorporating a regular practice of meditation.

8. Uninformed and Insensitive Doctors

Unfortunately, you may face uninformed and insensitive doctors, and they pose a challenge to anyone with a chronic illness, including thyroid patients. If you have thyroid cancer, you may encounter the well-meaning (but demeaning) doctors who tell you that “thyroid cancer is the good cancer,” when anyone with cancer knows that no cancer is “good” from the patient perspective.

Or, you may run into doctors who insist that natural desiccated thyroid drugs are from cows (they are actually derived from pigs), and pose a risk of mad cow disease.

Or you may have an out-of-date doctor who insists that an inconclusive thyroid biopsy means you must have thyroid surgery, unaware that the Afirma test from Veracyte can almost always definitively rule out or diagnose thyroid cancer based on biopsy results, and avoid needless surgery.

The best advice when you encounter one of these uninformed or insensitive doctors: It’s time to get a new thyroid doctor.

9. Family, Friends, and Coworkers Who Don't Understand

For many thyroid patients, thyroid disease doesn’t cause obvious external changes. You may not have significant weight changes or other visible evidence of your condition. At the same time, there are some celebrities—Modern Family’s Sofia Vergara comes to mind—who act as spokespeople and advocates for thyroid drugs, spreading the message that thyroid disease is a breeze to treat.

You may also know thyroid patients who, after diagnosis, take their pills, and don’t have any noticeable change in how they feel, and as a result, don’t believe that fellow thyroid patients still have unresolved symptoms.

This may mean that friends, family, and coworkers find it difficult to understand what you are going through, and lack any compassion or sympathy for your health challenges. A solution to this challenge? Give them one of these letters to help explain the situation to them:

10. Days When You Just Want to Give Up

One of the challenges many thyroid patients face are days when you just want to give up. It seems impossible to find the right doctor, the right medications, or the right lifestyle changes to relieve persistent symptoms like fatigue, weight gain, or depression. Your hair is falling out and nothing seems to be stopping it, or you sleep 12 hours and wake up still feeling exhausted. What’s the point, you might ask? If you, like many thyroid patients, get to the end of your rope in terms of coping with your thyroid disease, know that you're not alone. There are many people out there who know how you feel, and have themselves been able to overcome such feelings.

Sources:

Bahn, R., Burch, H, Cooper, D, et al. Hyperthyroidism and Other Causes of Thyrotoxicosis: Management Guidelines of the American Thyroid Association and American Association of Clinical Endocrinologists. Endocrine Practice. Vol 17 No. 3 May/June 2011.

Braverman, L, Cooper D. Werner & Ingbar's The Thyroid, 10th Edition. WLL/Wolters Kluwer; 2012.

Ch’ng, CL, et. al. "Celiac Disease and Autoimmune Thyroid Disease." Clinical Medicine & Research. 2007;5(3):184-192. doi:10.3121/cmr.2007.738.

Garber, J, Cobin, R, Gharib, H, et. al. "Clinical Practice Guidelines for Hypothyroidism in Adults: Cosponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association." Endocrine Practice. Vol 18 No. 6 November/December 2012.

Roy, A, et. al. "Prevalence of Celiac Disease in Patients with Autoimmune Thyroid Disease: A Meta-Analysis." Thyroid. 2016 Jul;26(7):880-90. doi: 10.1089/thy.2016.0108.

  • Up Next