Suspect a Thyroid Issue? Self-Advocacy Is Key

You have a right to receive the best medical treatment for your thyroid condition

With Samm Pryce MD

How to talk to your doctor about your thyroid

When Jess, 36, suspected an issue with her thyroid, her doctor told her to lose weight. “I had to seek out a specialist and surgeon on my own,” she says. Her suspicions were confirmed. She had a thyroid nodule. “I'm glad I did, because it turned out to be hiding cancer! I think the hardest thing for self-advocacy is overcoming the shame that one feels going to the doctor having gained or even not lost weight.”

Being told to lose weight is a common response that patients with endocrine conditions expect to hear from doctors as a catch-all for frustrating symptoms without being properly assessed or diagnosed to see what else is going on.

Unfortunately, thyroid conditions are also misdiagnosed as mental health issues, as they can lead to or worsen mood, anxiety, and depression. When they’re not properly treated, it can cause a vicious cycle of misdiagnosis and mistreatment, while the underlying thyroid problem remains unaddressed.

Because thyroid disorders are marked by nebulous or seemingly unconnected symptoms, it’s not obvious when there’s a thyroid issue at play. According to patients, even well-meaning doctors have a tendency to jump to responses around nutrition and weight gain without looking into the possibility of a thyroid condition unless explicitly asked (and sometimes asked again, and again).

In short, just because weight gain can cause a bevy of issues, such as fatigue or a puffy face, it doesn’t mean that a patient ought to be told to forgo proper assessment.

Getting tested for a thyroid condition

If you go to the doctor suspecting a possible thyroid complication, make sure to ask for the full range of tests, says Samm Pryce MD. It’s often not enough to test for Thyroid Stimulating Hormone (known as TSH), which may be the only test your doctor orders if you don't speak up.

One problem with solely testing for TSH is that TSH levels may not be problematic until your condition is more advanced. Also, there could be a problem with your body’s conversion of T4 to T3 (the form of hormone your body can actually use) which the TSH test alone can’t determine. In short, your body may have enough hormones, but it may not be able to access them, which is where other tests come into play.

Ask your doctor to conduct the following thyroid tests if you suspect you have an undiagnosed thyroid condition

  • Free T3 (Active form of thyroid)
  • Total T3
  • Free T4
  • Total T4
  • Selenium, which converts T4 to T3
  • Iodine
  • Reverse T3

As Dr. Pryce explains, “Cells overturn every 90 days, so blood work should be done every three months if you're still experiencing symptoms.”

Why self-advocacy is important for patients who suspect a thyroid issue

Caitlin Self MS, CNS, LDN of Frugal Nutrition explains, “One of the biggest burdens my patients carry is being ignored or brushed off by their doctors when they know something is wrong.” She says this is especially true for women of color, who are often neglected by practitioners due to bias and prejudice.

Here are some of her tips:

  • Ask your practitioner what they denied you. “If you request a full thyroid panel with high quality markers like free T4 and they say no, ask them to record that they denied your request. More often than not they will run the tests rather than document that they denied a patient request.”
  • Find yourself an advocate. Good options include licensed medical providers who have been trained in patient-centered care, such as a Certified Nutrition Specialist (CNS), or an IFM Certified Practitioner, which is someone with a functional medicine background. “They can help advocate on your behalf and get you the testing you need.” Self explains that she herself often reaches out to her clients’ doctors as a way of advocating for her patients if they had tests previously denied.
  • Have your antibodies checked regularly if you are diagnosed. This can help you observe the progression of your condition.

Look outside the box

According to Jen Mayo, a Holistic Health Coach (who also has Hashimoto's Disease), it’s important that patients feel empowered to seek doctors who are well-versed in thyroid issues. While you already know that finding an advocate is an option, so is seeking an osteopath (DO) or functional medicine doctor in addition to your MD.

It’s also important that you listen very closely to your own body, and not simply accept everything a doctor tells you if it doesn't fit with the way you know you are feeling.  

“In the days before lab tests were relied on for determining chemistry inside the body, doctors worked by way of developing relationships with their patients and came to know them on a very personal level,” Mayo explains. “We would do well to return to a model of care that puts the patient's connection with their own body first and restores the doctor-patient relationship to that which allows for more than the average fifteen-minute exam.”

Get everything in order before your doctor’s appointment

  • Write all of your symptoms down — when they started, their duration, and what they feel like
  • Know all of the tests you want to be ordered so you can maximize every minute of your appointment
  • Be ready with every question and concern you have. This can help you avoid getting flustered or giving in if you get shut down before you're finished.

Find a new doctor

If your doctor isn’t giving you the care you need, and if your intuition is sending you a warning, listen.

“Don't be afraid to fire your doctor if they don't possess the same whole-person approach that your intuition is guiding you to follow,” Mayo says. “The word 'heal' means to make whole, while the word 'treat' means to deal with or pull violently.  Symptom management and healing are two very different approaches.”

“With the right team members on board and your own personal agency, you may find that you not only recover from a thyroid imbalance, but you uplevel your life in a way that would not have been possible without confronting your own health challenges head-on.”

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