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For most of her life, Marie Myung-Ok Lee, now 43, had been plagued by cold hands and feet and thinning hair. The symptoms were classic signs of a thyroid disorder, although Lee didn't know it. Then, when she was 34, she had a miscarriage at 12 weeks. "The doctors told me that many first pregnancies miscarry and not to be concerned," says Lee. "But I read a lot of books about miscarriage, and undetected thyroid disease kept coming up as a major cause."
Lee asked her doctor to give her the blood test that screens for thyroid disorders by measuring levels of TSH, or thyroid stimulating hormone; her TSH was 5.0. "The doctor, who'd been reluctant to order the test, said to me, 'See, I told you everything's fine. Your thyroid is normal.'"
Except that it wasn't. More than four years ago, the guidelines for what's considered a normal thyroid changed. Previously, experts flagged a TSH level of 5.0 or above as hypothyroidism, or an underactive thyroid; now, anything over 3.0 could indicate a problem. But not all doctors agree on this, and some are reluctant to screen patients, saying it's unwarranted. As a result, experts say that up to 27 million people, a majority of them women, may have thyroid disease, and about half of them are undiagnosed. "It's shocking how frequently hypothyroidism goes undiagnosed," says Robert McConnell, MD, codirector of the New York Thyroid Center at Columbia University Medical Center. "It's so common, and it's easily treated by taking thyroid replacement hormone in a pill."
A butterfly-shaped gland in the neck, the thyroid, controls your metabolism -- which means it not only affects how many calories you burn but controls every beat of your heart and every breath you take. In other words, if your thyroid doesn't work properly, neither do you. When your thyroid is underactive, your body produces more TSH, which should stimulate the thyroid to produce more thyroid hormone. Symptoms of hypothyroidism -- the most common thyroid disorder -- include fatigue, weight gain, high blood pressure and, in severe cases, slowed speech and movement. The condition is also linked to increased rates of infertility and miscarriage. Experts estimate that about 6 percent of women develop thyroid problems after having a baby.
In 2002, backed by research and new understanding of how hypothyroidism develops, the American Association of Clinical Endocrinologists (AACE) broadened the scope for what's considered an underactive thyroid. "One problem was that the old guidelines for a normal thyroid actually included people with mild hypothyroidism," says Dr. McConnell. "But more and more thyroid experts now agree that levels above 3.0 should be taken seriously when a woman also reports that she's having symptoms."
So why aren't all doctors heeding the new guidelines? Some don't think there is enough evidence to support treating people with a TSH level under 5.0, or even under 5.5, says Leonard Wartofsky, MD, a thyroid-disease specialist at the Washington Hospital Center in Washington, D.C., and president of the Endocrine Society. "Are there any large, randomized studies showing that when you bring a TSH level of 4.0 down to 1.5, you miraculously make a person better? No," Dr. Wartofsky says. "Many doctors are unconvinced that treating these patients is going to make a difference, and they're concerned that overtreatment could cause hyperthyroidism [overactive thyroid]. But there are studies showing that when TSH is reduced to a normal level from even a mildly elevated range, symptoms lessen, including the lowering of cholesterol levels and improvement of cardiac function."
Also complicating the issue: The symptoms of hypothyroidism can be associated with so many other conditions. "When faced with vague signs like fatigue, disturbed sleep, and mood changes, a physician may not even be thinking about thyroid disease, but instead considering depression or anxiety," says Wanda Jones, DrPH, director of the Office on Women's Health in Washington, D.C. "Because those symptoms are hard to quantify, it can be difficult for doctors to determine whether treatment will get measurable results. If a woman is having symptoms, she needs to be assertive in requesting testing and discussing treatment."
Marie Myung-Ok Lee did exactly that: She kept pushing, and her doctors finally put her on a thyroid replacement hormone, Levothyroxine, a pill she takes once a day. In 2000, after being on the medication for a few months, she became pregnant and gave birth to a healthy baby boy.
Linda Thrasher's battle to get physicians to take her thyroid symptoms seriously lasted much longer. Now 38, the Lancaster County, Pennsylvania, woman started trying to conceive shortly after she got married at 21. For the next four and a half years, her life was a revolving door of fertility treatments and new physicians. She and her husband, stationed overseas in the military, tried everything from Clomid (a drug that spurs ovulation) to in vitro fertilization, with no success.
At the same time, she was inexplicably gaining weight -- ballooning from 120 pounds to 215 in about eight months. "I kept telling my infertility specialist and other doctors that I didn't feel good. They'd say 'Try lifting a barbell instead of a doughnut,' and I was going to the gym every single day!"
When she returned home to Pennsylvania, she asked her new internist to test her thyroid. Her TSH levels were well above 12.0, so the doctor put her on a low dose of thyroid medication. But she still felt terrible, couldn't lose the weight, and couldn't get pregnant. "All the doctors had the same general attitude: If I was still having symptoms, it was because I was depressed. They told me that because my TSH was now below 5.0, everything was fine," Thrasher says. But she kept pushing, and finally the doctor agreed to up her thyroid dose. She started losing weight, felt more energetic, and got pregnant within months. Her first son, Nicholas, was born in 1998, and Timothy followed in 2000.
While most experts don't recommend regular screening until you reach menopause, if you have a family history of thyroid problems or are experiencing symptoms such as weight gain, fatigue, puffiness, hair loss, depression, dry and itchy skin, and sore muscles, and are baffled as to the cause, you should ask for the blood test, recommends Richard Hellman, MD, president of the AACE. It takes only a few seconds, most insurance companies pay for it, and a laboratory can perform the test in less than 90 minutes. Results should come back within days.
Most important, if you're pregnant or trying to conceive, get your thyroid levels checked as soon as possible, says Dr. Hellman. "To me, it's unconscionable not to do it," he says. Left untreated, even subtle forms of thyroid dysfunction can have devastating consequences for a developing fetus, including miscarriage, premature birth, and developmental problems. In fact, the March of Dimes and other organizations are eagerly awaiting results from research on whether treating pregnant women with mild hypothyroidism will reduce the risk of these complications. If you're already on medication for an underactive thyroid, you'll probably need to have your dosage of thyroid hormone increased during pregnancy to maintain healthy levels. (Thyroid hormone replacement medication is safe to take when you're pregnant.) Here's how you can advocate for your best care:
Originally published in FITNESS magazine, June 2007.