Goiter Thyroid Cancer Providence RI

The Mysterious Malaise

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By Lynn Ginsburg

I was 22 when a doctor first asked me, “Has anyone ever told you that you have a goiter?” All I could think of at that moment was a photo I’d seen in a high school biology class of a woman with an enormous sac in the middle of her neck, kind of like how a frog looks when its throat is puffed up. Did I somehow look like that and just hadn’t noticed? I clutched at my neck, horrified at what I might find there.

It wasn’t even a throat-related complaint that had sent me to the doctor. Rather, I was there to ask him about the constant fatigue I was feeling, as well as the 25 or so pounds I’d recently put on. The doctor asked me about my family history and gave me a physical exam, which is how he discovered the goiter. When I mentioned my concerns about looking like a puffed-up frog, he assured me that goiters come in all sizes, and that mine was probably only apparent to a doctor.

He then pronounced with great confidence, “We’re going to do some blood tests, but I can tell you almost certainly that with your symptoms, family history, and goiter, you’ve got hypothyroidism.” I left reeling, but also relieved: If I had an actual condition, then presumably I could be cured.

But when I returned for my follow-up visit, the doctor seemed very puzzled. He told me that although he’d felt certain I had hypothyroidism, my tests were totally normal. He advised me to exercise more and eat less and sent me on my way.

This same experience was to be repeated many times in the years to come. Every time I went to see a doctor, he or she would point out my goiter, and every time the diagnostic tests came back normal. Still, my symptoms continued, and got worse over time. My fingers and nose were icy cold in the winter, I felt sluggish and sleepy, my skin was dry and cracking, and my brain often felt like it was wrapped in cotton. At 22, I was feeling like much a older version of the self I was accustomed to.

Then, 15 years after that first doctor visit, a friend encouraged me to take another look at the whole picture. She said there was a great deal of controversy about the diagnosis—and treatment—of hypothyroidism, and that it sounded like I was one of those people who was slipping through the cracks. She suggested I get on the Internet and read everything I could.

I took her advice, and the more I read the more convinced I was that she was right. In fact, according to the American Association of Clinical Endocrinologists (AACE), 27 million Americans are thought to have thyroid disease, but more than half remain undiagnosed. That means more than 13 million people are walking around feeling cold, tired, and fuzzy-headed, and needn’t be.

Part of the reason, to be fair, is that the symptoms of hypothyroidism are quite vague and can be suggestive of any number of conditions. But many experts now believe the standard diagnostic test isn’t nearly sensitive enough. Doctors, they say, need to broaden their myopic focus on the test results alo...

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