Understanding Thyroid Problems: Feeling sluggish? Bloated? Always cold? You may have a thyroid problem. But before you self-treat — or seek help from the numerous online coaches who peddle advice — find out what’s really wrong by Susan Carlton
I hadn’t been myself for months — flagging energy, fuzzy brain, and a 10-pound weight gain. I chalked the symptoms up to the lovely side effects of perimenopause and ran them by my gynecologist. “Let’s check your thyroid,” she suggested. My eyes lit up. Could the problems I’d assumed were inevitable be blamed on the tiny thyroid gland — and be reversed with a tinier pill? Maybe I didn’t have to renew my gym membership after all.
Turns out, it’s not quite so simple. The butterfly-shaped thyroid gland sits at the base of the neck just below the larynx and cranks out the hormones responsible for the body’s metabolism. When the gland doesn’t produce enough and metabolism turns sluggish, you’ve got a case of hypothyroidism. It sounds straightforward enough, but my thyroid test came back as a question mark — on-the-border hypothyroid, to be checked again in six months.
Since then, it seems all my 40-something friends think they’ve got thyroid problems, too. And they may well be right. At least 13 million Americans have some form of hypothyroidism, says Jeffrey Garber, M.D., who (literally) wrote the book on it — The Harvard Medical School Guide to Overcoming Thyroid Problems.
The incidence of hypothyroidism inches up with the years, to the point that by age 60, about 10% or more of people (and seven times more women than men) have some form of it. (Hyperthyroidism, meaning thyroid hormone production is in overdrive, is a less-common condition.)
Hypothyroidism has been recognized since at least the 17th century, yet it’s become a disease du jour, perhaps due in part to an announcement by Oprah a few years ago that she had a thyroid problem. What Oprah says, spreads. “After her first announcement, our inquiries bumped up 15% to 20%,” says Mary Shomon, who oversees the thyroid section on about.com. “And visits to the site spiked every time Oprah mentioned her treatment — people have lots of questions.”
There’s no shortage of answers for them. Hundreds of websites, a virtual cottage industry, profess to educate women about hypothyroidism. While waiting for my retest, I set out to separate the hype from the help and understand how one gland could cause so much havoc — and controversy.
Signs of the Times (And the Disease)
The symptoms of hypothyroidism read like a modern woman’s lament: fatigue, bloating, weight gain, irregular periods, constipation, dry skin, thinning hair, thinning brows (I checked the mirror — yep, sparser), forgetfulness, depression, cold hands and feet, muscle cramps, low sex drive. The symptoms are so insidious, I’ve had most at one point or another.
At the root of most hypothyroid cases is something called Hashimoto’s thyroiditis, an autoimmune disease in which the body produces antibodies that attack the thyroid and reduce its function. (Environmental toxins such as PCBs, medical radiation, and smoking also may play a role in making you more susceptible to autoimmune thyroid disease, a recent UCLA review found.)
It’s possible to have Hashimoto antibodies and not develop hypothyroidism, or to have hypothyroidism caused by something other than Hashimoto’s, but the two often go together. And speaking of going together…your risk of developing the disease is significantly upped if a first-degree relative (a parent, sibling, or child) has it. That’s a check mark for me — three people in my family have, as my mother calls it, “Hashi–no–thanks.”
If you or your doctor suspects hypothyroidism, the first step is a simple test to measure thyroid-stimulating hormone (TSH). It’s counterintuitive, but a high TSH is actually a sign that the thyroid is underactive — that is, more and more TSH is needed to goose the thyroid to produce.
For decades, the range for a normal TSH level was set at 0.5 to 5.0 — above 5.0 and you were considered to be hypothyroid, a candidate for periodic retests and possible treatment. Then, in 2003, based on more sensitive testing, the American Association of Clinical Endocrinologists (AACE) changed the range to 0.3 to 3.0. But not all doctors have signed on. Wary of overdiagnosis, Gilbert Daniels, M.D., codirector of the Thyroid Clinic at Massachusetts General Hospital, for instance, continues to use 5.0 as the cutoff.
And now, in case it’s not confusing enough, the numbers are changing yet again. Dr. Garber, who’s also chief of endocrinology at Harvard Vanguard (a multi-specialty practice) in Boston and who is helping develop the new guidelines, will recommend raising the upper limit from its current 3.0 to 4.1. Why? “A review of the literature shows up to half of people with a TSH in the 3 to 4 range either don‘t have hypothyroidism at all or have only the earliest phase, where there‘s no clear benefit from treatment,” he explains.
To confirm a hypothyroid diagnosis, many doctors suggest two additional blood tests: one to check the levels of T4 hormones (low levels confirm hypothyroid) and another to check for antithyroid antibodies (to see whether you have Hashimoto’s).
To Treat or Not to Treat
If your TSH numbers come back high — over 10.0, or especially above 15.0 — and you’ve got low T4 hormones, odds are a doctor will recommend medication. The goal isn’t just to ease symptoms — it’s also to preempt new ones. Untreated subclinical hypothyroidism with a TSH of 10.0 or higher is associated with a 60% to 90% increased risk of heart problems, a study found last year.
But lots of women (like me) end up with a TSH in the muddled middle, between 3.0 and 10.0. The sigh of relief that we aren’t overtly hypothyroid is followed by a sigh of frustration — what now? “There‘s no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range,” says Dr. Daniels, though if you have other problems, such as infertility or depression, your doctor might suggest medication. Similarly, for those who also have Hashimoto antibodies, the decision to treat may depend on other factors. If you have debilitating symptoms or develop a goiter (a protrusion of the thyroid itself), “it might make sense to try medication for a few months,” says Dr. Daniels. “Occasionally symptoms improve; often they don‘t.”
Still, some women are eager to start pills right away. Dr. Garber believes the subtext is often weight-related: “There‘s a notion that if you speed up metabolism, the weight just falls off.” But it’s not that clear, he explains. Some people lose nothing; for others, the only loss is water weight; and still others actually gain weight (from an increased appetite). A recent Danish analysis of a small group of newly diagnosed hypothyroid patients found little or no change in patients’ fat mass after one year of thyroid treatment.
Weight aside, the one time to be aggressive about treatment is around pregnancy, says Jennifer Lawrence, M.D., chief of endocrinology at South Georgia Medical Center in Valdosta, GA. “When we‘re treating hypothyroid women who are pregnant or trying to conceive, we like the TSH to be no more than 2.5,” she says. Adequate hormone levels are crucial to fetal brain development, and uncontrolled hypothyroidism in the mom is linked with a daunting list of fetal risks, including spontaneous abortion, preterm labor, low birth weight, and diminished IQ.
Treatment: Old-School Versus New-Age School
The idea behind thyroid treatment is to replace the missing hormone in your body. Synthetic T4 hormone has been the go-to medication for decades. Brands include Synthroid (the drug of choice for the women in my family), Levothroid, Levoxyl, and Unithroid. “The goal is to take the lowest dose possible to get the TSH in the 1 to 2 range,” says Daniel Duick, M.D., an endocrinologist in Phoenix and president of the American College of Endocrinology. For the most consistent dosing, doctors generally recommend that you go with a brand name, but if your health insurer insists on a generic, pick one brand and stick with it. “Each generic uses different binders, fillers, and sealers,” Dr. Duick says. “Jumping from one brand to another can throw off how the drug works in your body.”
Some holistic-leaning websites tout desiccated thyroid, derived from pig thyroid. “There‘s a perception it‘s more natural since it’s animal-derived, but the potency can vary,” says Dr. Duick.
The jury is also out — some would say, out to lunch — when it comes to supplements. After reading about hypothyroidism on a site from a clinic based in Maine, I filled out the suggested questionnaire (which turned out to cover all sorts of women’s health issues, not just thyroid): anxiety (mild), weight gain (moderate), and about 20 other queries. The result? My “hormonal health profile” was deemed, sight unseen, severe, and, for $94 a month, I was offered a lifestyle-changes plan and a variety of supplements (I passed).
Of the alphabet soup of supplements the clinic and other websites suggest, selenium shows promise. “There‘s soft evidence for the mineral, but it’s too early to say there‘s a definite benefit or to know what the trade–offs are,” says John C. Morris, M.D., chief of endocrinology at the Mayo Clinic in Rochester, MN. It’s even harder to make a case for iodine or iodine-rich kelp. “Yes, iodine deficiency can contribute to hypothyroidism, but deficiency isn‘t a common problem in the U.S.,” he says. And coconut oil, another touted cure, is downright nutty.
Online…And On Guard
Supplements aren’t the only thing being peddled online. Advice — often for a price — is plentiful. Type “thyroid coach” into a search engine, and you get almost two million hits. About.com’s Mary Shomon, a patient-turned-advocate, offers phone coaching to go over lab results or share her list of recommended doctors (often, complementary-medicine-oriented). In our 30-minute phone chat ($100), we covered medical sexism, her personal list of supplements, the vagaries of TSH testing, the benefits of being an assertive patient, and horror stories she’s heard from women (including one from a patient whose doctor told her, “Your problem isn‘t your thyroid — it‘s your husband“).
The Web also lends itself to expressing (thy)roid rage. The site stopthethyroidmadness.com has an article titled “Are endocrinologists just determined to be stupid?” for example. And hundreds of Facebook pages offer ways to vent (dearthyroid.org, a literary support site, has dramatically more “likes” than the American Thyroid Association).
While much online advice isn’t harmful, some is — or, at least, it’s not helpful. For instance, multiple sites suggest skipping blood work and diagnosing by thermometer — the theory being that a temp around 97°F is a sign the thyroid is underperforming. Anecdotal Web evidence aside, Dr. Daniels is blunt: “Totally bogus.”
To avoid the questionable websites, skip your usual Google or Yahoo search and go with a medically oriented search engine, such as MedlinePlus (medlineplus.gov), suggests Jerry Perry, president of the Medical Library Association. Or you can try the more academic PubMed (pubmed.gov), which will bring up research studies. The websites of mainstream thyroid organizations — including that of the American Association for Clinical Endocrinologists (aace.com) and the more user-friendly American Thyroid Association (thyroid.org) — are packed with FAQs, news briefs, and find-a-physician referrals.
But if you land on a site run by a clinic you’ve never heard of, or on a patient-advocate blog, it doesn’t mean the information is de facto wrong. “In the instant Web world, you can stumble upon legitimate early findings or a breakthrough trial,” Perry says. Consider it a starting point, and do due diligence: Read the About Us section to see which individual or organization is the source of the information, find out if the group is for-profit or nonprofit, check when the website was last updated, and consider tone (emotional versus objective). Then be sure to run the info by your doctor.
So here it is: Six months later and after a retest, I find my TSH is…exactly the same. Given my family history, my doctor recommends I check again next year. With all I’d learned about hypothyroidism, I had already decided that even if my levels had nudged up a bit, I would opt out of treatment. In the meantime, I’m drinking more java (for energy) and honing my crossword skills (for focus). As for the unwanted pounds, there’s a spinning class on Saturday with my name on it.