Haley Wetzel is a talkative teenage cheerleader who enjoys watching dirt-track car races on the weekends. She hopes to be a registered nurse someday at Lehigh Valley Hospital in Pennsylvania, where she’s taking youth education classes. She figures she’ll be good at empathizing with patients because of everything she’s been through.
Wetzel, now 14, was diagnosed with lupus at age six after she broke out in a rash on a family trip to Disney World. Soon after, her family found a good doctor who specialized in lupus and pediatric rheumatology, and she started taking medication that helped her symptoms. Things were far from perfect—her hair fell out and she had kidney problems and joint pain—but she was managing.
But in 2010, Wetzel started experiencing new health problems. “I was having weird throat pain and my weight was uncontrollable,” she recalls. She saw an endocrinologist, who tested the hormone levels for her thyroid, the butterfly-shaped gland in the front of the neck that produces hormones to help regulate the body’s metabolism. When the tests showed that Wetzel had hypothyroidism—also known as an underactive thyroid—the doctor prescribed a synthetic thyroid hormone called Synthroid®.
Thyroid problems like Wetzel’s are common in people with lupus. According to statistics from the Johns Hopkins Lupus Center, about 6 percent of people with lupus have hypothyroidism and 2 percent have overactive thyroid, or hyperthyroidism. A 2009 study published in the Journal of Clinical Rheumatology found that just over six percent of those with lupus tested had thyroid problems caused by autoimmune thyroid disease, compared with two percent in the general population.
Mark Lupo, M.D., a clinical endocrinologist in Sarasota, FL, who specializes in thyroid disease and frequently treats people with lupus, says researchers haven’t found a direct link between lupus and thyroid problems, except that people who have one autoimmune disease are more at risk for other autoimmune conditions.
“Sometimes people think that lupus is attacking their thyroid, and that’s causing their problem, but we haven’t seen clear evidence of that,” Lupo says. “There is research regarding immune-system predispositions—that some people, for whatever reason, have genetic programming that lends itself to different autoimmune attacks.”
Debora Garcia, a 48-year-old mother of three grown boys in Sacramento, has Hashimoto’s disease, the most common thyroid problem in people with lupus. Hashimoto’s is an autoimmune attack against the thyroid that causes destruction of the normal thyroid cells, followed by progressive inflammation of the thyroid gland, and eventually an underactive thyroid.
After six years of doctors treating her with antibiotics and telling her she was probably just depressed or tired because she had three small boys at home, Garcia’s internist finally diagnosed her with lupus and Hashimoto’s disease in 1991.
The diagnosis of hypothyroidism made sense. “I’d always been an athlete, but I was gaining weight no matter what I did,” she says. “And I was so tired, I couldn’t get out of bed.”
A few weeks after she started on thyroid medication, Garcia noticed a change. “I remember saying to my family, I didn’t realize truly how bad I felt until I started feeling better,” she says. “My weight went back to normal. My hair and eyelashes started growing back in.”
Doctors can detect thyroid problems with a simple blood test that measures thyroid-stimulating hormone (TSH) levels and, if necessary, a second test that measures the thyroid hormone thyroxine. But some doctors might not think to check for thyroid conditions in a person with lupus, because the symptoms can be similar.
“It’s a common problem,” Lupo says. “There’s a presumption of a lupus flare, or potentially a reaction to a lupus drug, when it actually may be another issue.”
Hypothyroidism in lupus can cause increased fatigue, cold intolerance, brain fog, dry skin, and weight gain. Symptoms of Graves’ disease (the most common cause of hyperthyroidism, in which the immune system tricks the thyroid into making too much thyroid hormone) include weight loss, tremors, heart palpitations, increased anxiety, and increased sweating.
Mary Shomon, a patient advocate and author of numerous books on autoimmune disease, including The Thyroid Diet, advises that if you suspect you might have a thyroid problem, be as specific as you can with your doctor.
“Quantify your symptoms,” Shomon advises. “Say, ‘I’m exhausted every day’ rather than ‘I’m tired.’ Or, ‘I’m a marathon runner, but I’m gaining 20 pounds every month.’”
It took Wetzel about six weeks after she was diagnosed with hypothyroidism to see improvement, says her mom, Renee. Slowly, she started losing some of the 30 to 40 pounds she gained. Two years later, she still experiences neck pains at times, but not as frequently or as severely.
She and her mom are writing down any symptoms to share with the doctor when they go to the endocrinologist for follow-up testing. “I got blood work done in November,” says Wetzel. “Mostly, everything came back good.” She’s busy with her studies, both at home, where she’s in ninth grade at an online school, and at the hospital, where she’ll soon be learning hands-on things like CPR and how to hook up an IV.
“I’m definitely sticking with this,” she says of her nursing classes. “I just want to be there to help people.”