What You Need to Know About Your Thyroid That Your Doctor Won’t Tell You

It’s estimated that more than half of Americans with thyroid disease are undiagnosed.
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It’s estimated that more than half of Americans with thyroid disease are undiagnosed.

Thyroid disease runs in my family, and I have several friends diagnosed with some form of it. Chances are, you know someone dealing with it, too. The U.S. Office on Women’s Health reports that one in eight women develop a lifelong condition, and women are five times more likely than men to have thyroid issues. But of the estimated thirty million Americans who have thyroid disease, more than half live undiagnosed or misdiagnosed. The reasons why are complex, but the best thing you can do boils down to educating yourself and being your own advocate.

The American Association of Clinical Endocrinologists identifies thyroid diseases as more common than diabetes or heart disease. But when was the last time you paid attention to yours? Unless you’ve been diagnosed, probably never. January is Thyroid Awareness Month, so now is the time to increase your awareness of the symptoms and what to do about potential warning signs.

Thyroid 101

The thyroid is the butterfly-shaped gland located in the middle of your neck. It’s the master control center for the metabolic functions of nearly every cell in your body. Research suggests that thyroid function is mainly genetically inherited, with a 40 to 65 percent heritability depending on the hormones involved.

Thyroid diseases can develop when it either overproduces (hyperthyroidism) or underproduces (hypothyroidism) hormones. If left untreated, hyperthyroidism can lead to a weak heart and excessive bone loss. Untreated hypothyroidism increases risk of birth defects in children, infertility, heart disease, and mental health issues. Both conditions are lifelong, but the symptoms can be managed.

What Are the Symptoms?

Admittedly, diagnosing thyroid issues is difficult. From mental to physical effects such as crabbiness or unexplained muscle pain, the range and severity of symptoms are very broad, which makes it difficult for patients and doctors to pinpoint thyroid disorder as the culprit.

Ada Chang, 29, suffered from hyperthyroidism for eight years before doctors gave her radiation to treat her overactive thyroid. “I found out that having thyroid issues is actually fairly common, but doctors don’t often test for it,” she shares.

Cleveland Clinic lists signs of an underactive thyroid including: fatigue; heavy menstrual periods; forgetfulness; weight gain; dry, coarse skin or hair; hoarse voice; and intolerance to cold. Signs of an overactive thyroid include: irritability, nervousness, muscle weakness or tremors, weak or infrequent menstrual periods, weight loss, sleep disturbances, an enlarged thyroid gland, vision problems, or heat sensitivity. The American Cancer Society also recommends keeping an eye out for any lumps, swelling or pain in your neck, trouble swallowing or breathing, or a constant cough because these may be symptoms of thyroid cancer.

If you’ve noticed symptoms that you know aren’t caused by stress or other outliers such as a change in diet or lifestyle, it’s a good idea to make an appointment with an endocrinologist. To accurately diagnose a thyroid condition, comprehensive thyroid blood tests are in order. Most insurance covers preventative screening and medically necessary tests. Out-of-pocket costs will vary depending on your carrier. If you aren’t covered by health insurance, each thyroid blood test can range from $35 to $150 depending on the lab and test type.

However, most doctors won’t resort to blood tests as the first move. And in medical schools in the U.S., doctors are trained to rely on one blood test, a test to determine how much thyroid stimulating hormone (TSH) is in your blood. But Thyroid.About.com lists twelve different possible thyroid tests, and thyroid experts recommend testing at least TSH and Free T4 or Free T3. Doctors also rely on strict “normal” versus “optimal” hormone ranges; one test may come out “normal” even if your symptoms say otherwise.

If you and your doctor have discussed what’s going on and feel you may have a thyroid condition, it’s best to insist on full testing. “Most doctors will do one of the tests but not the other, so it may come out as a normal range,” Ada says. “But when you do the other test, you see just how bad it is.”

Advocating for Yourself

Even with her symptoms and insisting that thyroid issues run in her family, Ada still couldn’t reach a diagnosis easily. Doctors, she says, were quick to downplay what was happening. Flaky skin? Drink water. Weight gain? Go on a diet. Can’t concentrate? Sleep. It took a few doctors and three years to finally test, diagnose, and treat her.

Ada isn’t unusual in this regard. Hypothyroid Mom notes that the Thyroid Federation International estimates that up to 300 million people worldwide suffer from thyroid dysfunction, yet more than half are presumed to be unaware of their condition. The top reasons include doctors failing to investigate the patient’s full medical and family history, failure to order full thyroid blood testing, and overlooking symptoms as minor and not worthy of much attention.

Yale-trained physician Aviva Romm, M.D., writes, “So many doctors seem reluctant to do an adequate workup of thyroid function. Some even refuse! This seems strange given how common thyroid problems are, and yet they are quite willing to freely prescribe antidepressants. My patient’s doctor was doing just what we were all told to do in medical school—check the TSH, and if that’s within what we were told is the normal range, there’s no problem. But there’s much more complexity to thyroid testing than that! Sadly, so many women are left believing that their symptoms of depression, fatigue, joint aches, weakness, weight gain, and more are all in their head!”

For Ada, symptoms varied from palpitations, lightheadedness, and high heart rate to fatigue. “I would randomly want to fall asleep but at the same time had a hard time sleeping,” she says. “I was also struggling in school because I could not concentrate for the life of me even though I used to do pretty darn well.”

If you suspect you may have a condition, feel empowered to seek diagnoses and treatment. “Women need to be their own advocates if they feel like they have it,” Ada advises. While some symptoms can be easily overlooked or equated to something else, “in the end, you know your own body,” Ada says. “You know when something is wrong.”

The Physical and Mental Impact of Treatment

If diagnosed with thyroid disease, doctors often prescribe medication. If medication doesn’t work, you may need radiation or surgery to remove all or part of your thyroid, says the U.S. Office on Women’s Health.

When coping with this disease, Ada says, “Aside from the health factors, there’s a mental factor as well. You feel out of control; your body goes through crazy changes. It really takes a toll on your self-confidence.”

After she was prescribed medication for hyperthyroidism, Ada recalls, “I gained thirty pounds after I started because it slowed my crazy metabolism.” She admits, “Because I had hyperthyroidism, my metabolism was super-high. But my eating didn’t change after I started meds. So I blew up. I was so upset over the weight gain [that] I skipped my medicine. And I know some other friends who avoid it because they are afraid of gaining weight. It’s pretty sad, but [being thin] is not worth skipping treatment for the condition.”

Medication is often enough, but some people aren’t able to achieve a stable thyroid. Ada’s thyroid was so active that doctors decided to shut it down altogether.

“Now I have no metabolism,” Ada shares. “After radiation I went through a whole new bout of sadness because now weight is a constant issue. My medicine keeps my [hormone] levels normal, but I definitely gain weight easier than my friends. Weight aside though, I do feel much better. My mind is mine now. Overall I’m happier, except for my body issues, but I think every girl has those—thyroid issues or not.”

What You Can Do About It

Self-care is essential to thyroid care—this includes the trifecta of getting seven to nine hours of sleep per night, managing stress, and eating healthily.

You can also monitor your thyroid health by checking your neck for abnormalities. To perform a “neck check,” stand in front of a mirror, tilt your head back, and drink water. As you swallow, look for any unusual protrusions in your neck near your collarbone (not higher up, which is your Adam’s apple). (Visual learners can watch Prevention Magazine’s thyroid check tutorial.) If you notice anything, schedule an appointment with your doctor. But don’t panic—only one in twenty cases of a neck lump are thyroid cancer, according to the American Cancer Association.

“Even when I am saying this all to you, I can see how it doesn’t sound like a big deal to people who don’t experience it,” Ada says. But as you can see from her story, not unlike the story that many women face, thyroid problems can and do impact your whole life. “When I meet someone else who has it, I can understand their frustration and sadness.”

Remember that you are in charge of your health. Yes, your doctor can treat ailments, but only if you recognize that something is off and make an appointment. Do your part to raise awareness during Thyroid Awareness Month, and share this information with the women in your life. It could be the push she needs to recognize that her pain is real.

Photo Credit: Adobe Stock