Why You Should Be Your Own Thyroid Advocate

Patient Expert
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If you ask many doctors, they will tell you that “thyroid disease is easy to diagnose and easy to treat.” Celebrity-sponsored drug advertisements suggest that taking “a pill a day” is a one-size-fits-all solution to treat your thyroid. The truth is that sometimes, thyroid disease can be easily diagnosed and treated with a pill a day, but for many of us, the reality is far more challenging. Whether you are newly diagnosed or you’ve had a thyroid condition for years, it’s important to know that a crucial foundation in restoring your health is to be a strong advocate for your thyroid health.

What does advocating for your thyroid health look like in practice? Let’s explore the basics.

Understand your condition

You may be tempted to trust that your practitioner knows best, and accept a diagnosis, test result, or prescription without researching on your own, or asking questions. After all, your practitioner is the one with a medical education; they should know what’s best for you. This can be a mistake with thyroid conditions.

You need to first make sure that you know your specific diagnosis and the details of your thyroid condition. For example, if you are hypothyroid, is it a result of the autoimmune disease known as Hashimoto’s thyroiditis? If you have thyroid cancer, you need to know the type of thyroid cancer, and the staging. Is your goiter due to Hashimoto’s, Graves’ disease, or thyroid nodules?

Once you have the specifics, your next step is to read and learn. You can expand your knowledge by exploring reliable sources online, reading books, and connecting with other patients to share information and experiences.

Know your treatment options

Before you make a treatment decision, you absolutely need to research the options.

For example, when exploring treatment options for hypothyroidism, conventional physicians may offer only levothyroxine (synthetic T4) treatment, prescribing a drug such as Synthroid, Levoxyl, or Tirosint. There are, however, two other key treatment protocols available:

  • Levothyroxine plus an added T3 drug, like liothyronine (brand name: Cytomel)
  • Natural desiccated thyroid drugs (NDT), like Nature-throid or Armour Thyroid, which contain both T4 and T3 hormones

There is research showing that a subset of people being treated for hypothyroidism have better resolution of their symptoms with a treatment that includes both T4 and T3.

When it comes to treatment options for Graves’ disease and hyperthyroidism, conventional doctors may push you to accept radioactive iodine (RAI) ablation treatment — which involves taking a liquid or pill form of radioactive iodine that destroys your thyroid, and leaves you permanently hypothyroid. There are, however, other options, including:

  • Antithyroid drugs, like methimazole or PTU, which can sometimes put you into remission
  • Surgery, which can relieve symptoms quickly, and which allow women of child-bearing age to avoid the one-year waiting period after RAI that is recommended before getting pregnant

Another important example is with thyroid nodules. Only a small percentage of nodules are cancerous, but when you have a suspicious nodule, your doctor will typically order a fine needle aspiration (FNA) biopsy for diagnosis. Until recently, if yours was malignant, or the results were inconclusive — considered “indeterminate” — your next step would automatically be a thyroidectomy to surgically remove your entire thyroid gland. Unfortunately, many of the indeterminate nodules were, after surgery, found to be benign, but those patients were left hypothyroid for life and dependent on thyroid hormone replacement drugs. A test called the Afirma Thyroid Analysis test can make FNA results conclusive in almost all cases, and eliminate most unnecessary surgery. Many patients with indeterminate but ultimately benign nodules still end up having needless surgery, however, because their doctors don’t know about the Afirma test.

Review and understand your lab tests

When a thyroid condition is suspected, it’s common for a doctor to only test your thyroid stimulating hormone (TSH) level. If your result is within the reference range, sometimes called the “normal range,” you may get a call or postcard saying “your thyroid is normal.” That is not enough information. You need to know the actual number and the laboratory’s TSH reference range, because there is a great deal of controversy regarding this range and the levels that represent thyroid disease. For example, some doctors consider levels over 3.0 mIU/L — still within the reference range — to be evidence of borderline or subclinical hypothyroidism. Others feel that your TSH levels must be above 10.0 mIU/L, a level at which many patients have significant symptoms, before your treatment is started.

You should also know about the free T4 and free T3 tests, which evaluate your actual circulating thyroid hormone levels. Increasingly, integrative and holistic physicians look at the results of these tests in making a diagnosis. Some doctors consider levels at both ends of the reference range to be evidence of borderline thyroid conditions and warranting treatment.

You also need to know about thyroid antibodies tests, mainly the thyroid peroxidase (TPO) antibodies test, and the thyroid stimulating immunoglobulin (TSI) test. The TPO test can identify antibodies found in autoimmune Hashimoto’s disease, the main cause of hypothyroidism in the United States. The TSI test detects antibodies that are common in autoimmune Graves’ disease. Some physicians believe that when the TSH, free T4, and Free T3 are normal, and especially when you have thyroid symptoms, you may warrant treatment.

Pay special attention before, during, and after pregnancy

When you are planning to conceive, are pregnant, or have just had a baby, you need to pay extra attention to advocating for yourself. There are a number of challenges that thyroid issues pose for fertility, pregnancy, and the postpartum period.

  • If you are undergoing fertility testing or treatment, thyroid evaluation is inexplicably not included by many clinics and practitioners, when thyroid function and autoimmunity are known factors that affect your ability to get pregnant.
  • According to the recommended and accepted guidelines, for optimal fertility and to prevent early miscarriage, experts recommend that your TSH level be less than 2.0 mIU/L before conception, and during the first trimester.
  • You need to supplement with iodine before, during, and after pregnancy to help support your thyroid function. Many doctors, however, fail to make this recommendation, and many prenatal vitamins—including prescription formulations—do not include iodine.
  • If you are already on thyroid hormone replacement medication for hypothyroidism, you need to have a plan in place with your doctor to increase your dosage as soon as you confirm your pregnancy.
  • After pregnancy, thyroid imbalances can contribute to or cause problems with breastfeeding, as well as postpartum depression.

Don’t assume your doctors will know this critical information. Research has shown that the majority of obstetricians are not up to date on managing thyroid disease during pregnancy, or following the latest guidelines. And many endocrinologists are not informed about managing pregnancy in their thyroid patients. It may be up to you to maximize your chance at a successful pregnancy and healthy baby.

Partner with the right practitioner

Finally, when it comes to practitioners, make sure that you are partnering with an informed, proactive health professional. If your practitioner refuses to discuss diagnostic and treatment options, focuses solely on your test results, or doesn’t consider resolving your symptoms a key goal, then it’s time to find another doctor. Keep in mind that while endocrinologists — considered specialists in thyroid disease — are important for hyperthyroidism, thyroid nodules, and thyroid cancer diagnosis and treatment — you may find that the diagnosis and treatment of your Hashimoto’s disease and hypothyroidism would be better managed by a nurse practitioner, physician’s assistant, naturopathic physician, or doctor specializing in hormonal balance.

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