If you have a diagnosed thyroid condition or are in the process of getting a diagnosis, a number of scenarios should make you consider getting a second opinion.
When you have thyroid symptoms but your doctor won’t diagnose and treat you
One of the most common challenges is when you have a number of thyroid symptoms, but your doctor will not diagnose you with a thyroid condition or provide treatment because your thyroid stimulating hormone (TSH) level is within the reference range. If you find yourself in this predicament, you may need to get a second opinion from another physician. Ideally, that practitioner should be someone who not only tests your TSH level but also evaluates your free T4, free T3, and thyroid antibodies and considers sub-optimal levels — even within the reference range — as potential evidence of a diagnosable and treatable thyroid condition. Also, be sure your endocrinologist has checked your pituitary to see if you may have additional endocrine problems there which may be confusing your test results. You will likely need to look beyond the endocrinologist community to find an integrative physician. A good resource is the American College for Advancement in Medicine (ACAM) practitioner database.
When you’re being treated for hypothyroidism, but still not feeling well
Another common challenge is when you are being treated for hypothyroidism — usually with a levothyroxine drug like Synthroid or Levoxyl — but you still have notable and persistent symptoms. Some of your symptoms may include an inability to lose weight, fatigue, depression, and hair loss. If you’re facing this situation, your first step is to discuss any changes to your treatment with your doctor. Possible changes include an increase in your medication dosage, free T3 testing, and/or the inclusion of a second hormone in your treatment such as synthetic T3 or a natural desiccated thyroid. If your doctor refuses, you will probably need to find an open-minded practitioner with a more holistic perspective. In addition to the ACAM database, the American Association of Integrative Medicine, the International College of Integrative Medicine, and the American Association of Naturopathic Physicians have useful practitioner databases.
When you’re hyperthyroid or have Graves’ disease and your doctor insists on radioactive iodine (RAI)
In the United States, the standard treatment for Graves’ disease and hyperthyroidism is radioactive iodine (RAI) ablation therapy. This treatment provides a dose of radioactive iodine that concentrates in your thyroid gland and disables it. It is considered an effective treatment for an overactive thyroid, one that usually results in lifelong hypothyroidism. RAI, however, has also been linked to reduced effectiveness in treating thyroid eye disease and its symptoms, including double vision. Women of childbearing age are also cautioned to wait a year after RAI before getting pregnant. Before agreeing to RAI, you may want to get a second opinion about other Graves’ disease and hyperthyroidism treatment options, including antithyroid drug therapy and surgery. Ideally, that second opinion should come from an endocrinologist who specializes in thyroid disease. A good resource for finding one is the American Thyroid Association’s (ATA) practitioner database.
When you have inconclusive or indeterminate thyroid nodules and your doctor recommends a thyroidectomy
If you have thyroid nodules, the first steps most doctors will take include:
- An ultrasound, a CT scan, and/or an MRI to evaluate the size and location of your nodules
- Blood testing to evaluate your thyroid function
- A radioactive iodine uptake (RAI-U) scan to determine if your nodules behave in ways that suggest they are cancerous
- A fine needle aspiration (FNA) biopsy if your nodules are at all suspicious or have characteristics of thyroid cancer
If an FNA biopsy confirms thyroid cancer, the next step is almost always surgical removal of your thyroid gland, known as a thyroidectomy. If the FNA biopsy reveals that your nodules are inconclusive or indeterminate, however, then a second opinion may be essential.
Until recently, the next step for someone with indeterminate or inconclusive nodules was thyroidectomy. After surgery, a pathologist would then examine the nodules for evidence of cancer. A substantial number of people had benign nodules, however, and the thyroidectomy proved unnecessary.
Now, genomic tests such as Veracyte’s Afirma Thyroid FNA Analysis can be performed at the time of the first FNA biopsy or by using samples taken during follow-up biopsies. These tests provide results about your nodules that are nearly conclusive. If your nodules are benign — as the majority are — you will not need needless surgery to remove your thyroid gland.
When you have a very small, slowly growing, asymptomatic thyroid tumor
Many doctors believe that thyroid cancer is being over diagnosed and that some very small thyroid tumors warrant monitoring, but not active treatment. If you have a very small, non-aggressive, contained thyroid cancer — called a microcarcinoma — you should consult with a thyroid cancer specialist. Be aware that because thyroid cancer is still relatively uncommon, many physicians have limited experience with thyroid cancer. A good resource is the Thyroid Cancer Survivors Association.
When you need thyroid surgery and have an inexperienced surgeon
Thyroidectomy is not a common surgery. As a result, many surgeons have limited experience. The risk of complications from thyroid surgery is exponentially increased when performed by less experienced surgeons. According to New York’s Columbia University Medical Center, a top thyroid surgery center, only surgeons who have performed more than 500 thyroid surgeries are considered experienced. Those who have performed more than 1,000 are rated as experts. To find an experienced or expert thyroid surgeon, you can start with the American Association of Endocrine Surgeons database of practitioners. Columbia’s New York Thyroid Center and the Endocrine Surgery Center at Johns Hopkins both have a number of expert thyroid surgeons on staff. Other hospitals with top thyroid surgery centers are listed in the U.S. News and World Report’s online ranking of top endocrinology hospitals.
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Mary Shomon is a thyroid disease, hormonal and autoimmune health writer, and patient advocate. For two decades, Mary has been a leading force advocating for more effective, patient-centered thyroid and hormonal health care. Mary is the New York Times bestselling author of “The Thyroid Diet Revolution,” “Your Healthy Pregnancy with Thyroid Disease,” “Living Well With Hypothyroidism,” and 10 other books on thyroid disease and integrative health. She co-stars in two PBS health specials, “Healthy Hormones,” and “Vibrant for Life.” Follow her on Twitter at @thyroidmary or at her Facebook communities: ThyroidSupport and ThyroidDiet.