After years of debilitating fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto’s disease, an autoimmune disease.
For her and millions of other Americans, it is the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland located in the neck, does not produce enough hormones needed to regulation of metabolism.
There is no cure for Hashimoto’s disease or hypothyroidism. But VanOrden, who lives in Athens, Texas, began taking levothyroxine, a widely prescribed synthetic thyroid hormone used to treat common symptoms, such as fatigue, weight gain, hair loss and sensitivity to cold. .
Most patients do well on levothyroxine and their symptoms disappear. Yet for others, like VanOrden, the drug isn’t as effective.
For her, that meant going from doctor to doctor, test to test and treatment to treatment, spending about $5,000 a year.
“I look and act like a pretty energetic person,” says VanOrden, 38, explaining that her symptoms are not visible. “But there’s a hole in my gas tank,” she said. And “stress makes the hole bigger.”
Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There is more than 80 of these diseasesaffecting up to an estimate 50 million Americans, disproportionately, women. Overall, the cost of treating autoimmune diseases is estimated to be more than 100 billion dollars every year in the United States
Despite their frequency, finding help for many autoimmune diseases can be frustrating and expensive. Getting a diagnosis can be a major hurdle because the range of symptoms is very similar to other medical problems and there is often no definitive identifying test, says Dr Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. Additionally, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.
“They are often upset. Patients feel rejected,” Dr. Elizabeth McAninchendocrinologist and thyroid expert at Stanford University, talks about some patients who come to him for help.
Insufficient medical training and lack of investment in new research are two factors that hinder the overall understanding of hypothyroidism, according to Antonio Bianco, an endocrinologist at the University of Chicago and a leading expert in the field.
Some patients become angry when their symptoms don’t respond to standard treatments, whether levothyroxine or this drug in combination with another hormone, says Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We’ll have to remain open to the possibility that we’re missing something here,” he says.
Jennifer Ryan, 42, says she has spent “thousands of dollars out of pocket” searching for answers. Doctors did not recommend thyroid hormone treatment for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s disease after years of fatigue and weight gain — because her levels appeared normal. She recently changed doctors and hopes for the best.
“You don’t walk around in pain all day and you don’t have anything wrong,” Ryan says.
And health insurers typically deny coverage for new hypothyroidism treatments, says Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use generics even though many patients don’t do well with these treatments,” she says.
Meanwhile, the extent of Americans’ thyroid problems is reflected in drug sales. Levothyroxine is one of the five most prescribed drugs in the United States each year. Again research points to some overprescription medicine for people with mild hypothyroidism.
A recent studyfunded by AbbVie – maker of Synthroid, a branded version of levothyroxine – said a medical and pharmaceutical claims database showed the prevalence of hypothyroidism, including milder forms, had increased from 9 .5% of Americans in 2012 to 11.7% in 2019.
The number of people diagnosed will increase as the population ages, McAninch says. Endocrine disruptors – natural or synthetic chemicals that can affect hormones – could explain some of this increase, she says.
In their search for answers, patients sometimes log onto social media, where they ask questions and describe their thyroid hormone levels, treatment regimens and symptoms. Some online platforms offer questionable information, to say the least, but overall, social media has given patients a better understanding of difficult-to-resolve symptoms, Bianco says.
They also encourage each other.
VanOrden, who has been active on Reddit, gives this advice to other patients: “Don’t give up. Keep fighting for yourself. Somewhere, there is a doctor who will listen to you.” She started an alternative treatment — a drug for desiccated thyroid, an option not approved by the FDA — plus a low dose of the drug naltrexone, although data is limited. She feels better now.
Research into autoimmune thyroid diseases receives little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment has not yet fully recognized difficult-to-treat hypothyroid patients, but increased recognition of these patients and their symptoms would help fund research, Bianco says.
“I would like very clear and solid recognition of the existence of these patients,” he says. “These people are real.”
KFF Health Newsformerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism on health issues and is one of the major operating programs of KFF — the independent source for health policy research, polling and journalism.
