Danielle Gayden of Oakland, Calif., had to stick her face in front of a fan for almost an hour to cool down. Second to her intolerance for heat was the anxiety, which caused her heart to beat 200 times a minute and sent her to the emergency room a dozen times in six months.
But Gayden, then 28 and newly married, had nothing to feel anxious about. Still, doctors prescribed anxiety medication for what she described as an overwhelming sense of terror. Had they noted her family history of thyroid disease, the ER staffers may have called an endocrinologist to check Gayden's TSH, or thyroid stimulating hormone, to see if it was too high.
The thyroid gland, located in the neck just below the larynx, is the body's metabolism master. It converts iodine into hormones that influence every cell and organ in the body, affecting our weight, mood, energy level and body temperature, says Rick Dlott, a Martinez, Calif.-based endocrinologist with Kaiser Permanente.
If hormones are too low, one is considered hypothyroid and may suffer from fatigue, high cholesterol, weight gain, dry skin and depression. Too high, or hyperthyroid, like Gayden, and one may experience anxiety, insomnia and weight loss.
It seems we only hear about the butterfly-shaped thyroid gland in conjunction with a celebrity's fluctuating weight. But the most common thyroid diseases are autoimmune, and include Hashimoto's (hypothyroid) and Graves' disease (hyperthyroid). An estimated 20 million Americans have some form of thyroid disease, and up to 60 percent don't know it, according to the American Thyroid Association.
The reasons are complex. For starters, thyroid disease is hard to diagnose because most standard blood tests don't pick up on this small but vital gland, according to world-renowned endocrinologist Kent Holtorf of Torrance, Calif. Also, symptoms are so common they are often attributed to other health problems.
Finally, even though hypothyroidism is particularly easy to catch, as it is more common in women over 60, we interviewed dozens of women for this story who were on cholesterol-reducing medications and antidepressants long before they or their doctors realized the thyroid was to blame. Even after treatment with natural or synthetic hormones, a lot of women still suffer with symptoms because there is a discrepancy and debate among health care providers as to what is normal TSH and if it is even the most accurate marker for hypothyroidism.
For instance, Kaiser Permanente's range is 0.1 and 5.5, while the labs at Stanford University's School of Medicine use 0.4 to 4.0. The American Association of Clinical Endocrinologists recommends treatment for patients who test outside a TSH level of 0.3 to 3.0. Consequently, more and more research is proving other thyroid hormones such as T4 and especially T3 give us a better picture of hypothyroidism, especially in patients who suffer from obesity, diabetes, depression, inflammation, or chronic fatigue syndrome, says Holtorf, an expert in hypothyroidism. Holtorf and other experts, like Stanford's Haruko Akatsu, say it is imperative to treat the patient and symptoms rather than a number. After all, one person's comfortable 0.2 is another's hypo zone.
"Let's say I had a patient with a TSH of 0.4 and either their T4 or T3 is low. That's abnormal to me," says Akatsu, an endocrinologist and medical director of the university's Thyroid Cancer Program. "No matter what is printing on the lab paper, we need to assess the patient. I hardly ever use TSH alone, but I guess it's a good place to start."
Last summer, B. J. Thorsnes became a victim of the thyroid numbers game when she was hit with unexplained exhaustion, severe dry skin, joint pain, swelling in her feet, and a "muddled brain." "At 66, you don't know what's happening with your body," Thorsnes says. "But I knew it wasn't just that I was getting older."
The first doctor did blame her age. The second one prescribed Prozac and told Thorsnes to see a psychologist. After reading about hypothyroidism and talking with friends, many of whom were dealing with the same symptoms, Thorsnes asked for a thyroid test. Turns out it was on the low end of her provider's range, but because they considered her normal and would not treat her, Thorsnes switched to an out-of-network physician. That doctor tested and confirmed that Thorsnes' low T3 and T4 levels made her hypothyroid.
"I felt like a new person within days of receiving a slight amount of thyroid hormone," says Thorsnes, who has three sisters and two aunts -- all with some form of thyroid disease. "I can't tell you how excited I am to no longer be dismissed as one of those 'older ladies' who doesn't know her own mind or body and needs a shrink to navigate life's changes."
"Old ladies" are hardly the only ones suffering from low thyroid problems. Andy Bryant was diagnosed with an underactive thyroid six years ago when a new doctor was suspicious of Bryant's symptoms, including fatigue and weight gain despite an active lifestyle, elevated cholesterol, coldness, dry skin and thin, brittle hair.
"In the morning, I'd comb it and it would be falling out on the counter," says Bryant, who is now 51 and has no family history of thyroid disease. "I was quite surprised that I would have these issues, since I had always heard it was a condition primarily impacting women."
These days, the synthetic hormone medication Bryant takes generally works well in mitigating symptoms, although it isn't perfect and he still has periodic fatigue days, he says. A remedy from a San Jose, Calif.-based Chinese herbalist has also helped relieve the coldness symptom, he says. Bryant has worked closely with his doctor to find his thyroid's happy place, and has his levels checked at least once a year.
"I tend to feel better when I'm at the lower numerical range," he says. "You just have to find a doctor who's willing to adjust you."
Cheri Krueger found a doctor who practically saved her life. It was January of 1999, and Krueger was living on an Arkansas farm during a terrible tornado spell. While running from a twister, Krueger slipped on her deck and fractured her vertebrae. As a result, she was in a recliner for three months. During that period of limited activity, she started noticing the hyperthyroid symptoms.
"Heart palpitations so hard they'd wake me up," Krueger recalls. "My hands would shake all the time. I could not go an hour without eating. I'd be walking across the pasture and my legs would buckle. And according to my husband, I was a huge bitch."
Around that time, Krueger read an article in a women's magazine about how to do a thyroid self-test. She swallowed while looking in the mirror and noticed the pronounced butterfly shape in her neck. Later, when she met with a doctor, he told Krueger he could tell she was hyperthyroid by looking at her from across the waiting room.
That fall, he gave her radioactive iodine, a treatment in which iodine collects in the thyroid and over time, the radioactivity destroys overactive thyroid cells. It caused her thyroid gland to shut down to the point of hypothyroidism, a common response. All of a sudden, Krueger found herself on the opposite metabolic spectrum. She was lethargic, felt cold and gained weight.
Since, her doctor has stabilized her with synthetic hormones, which she takes every day, as soon as she pries her eyes open in the morning, she says. The entire experience has taught Krueger never to ignore symptoms, especially when it comes to something as all-encompassing as a thyroid problem. "An undiagnosed thyroid imbalance can cause serious long term-health problems," she says. "It's not just a weight thing."
• National Academy of Hypothyroidism. Headed by thyroid expert Kent Holtorf, this nonprofit group of thyroidologists promotes the latest scientifically sound and medically proven concepts and information about the diagnosis and treatment of hypothyroidism. (nahypothyroidism.org)
• Mary Shomon. This patient advocate and thyroid disease sufferer has penned many best-selling books and educational materials about thyroid health, including "The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss" (Harper, 2004). Read her blog at thyroid.about.com or follow her on Twitter @ThyroidMary.
• Light of Life Foundation. A Web site dedicated to the early detection, diagnosis and treatment of thyroid cancer. (www.checkyourneck.com)
• American Thyroid Association. Founded in 1923, this organization is made up of physicians and scientists who specialize in thyroid diseases. The group also guides public policy about the prevention and management of thyroid diseases. (www.thyroid.org)