Many patients with autoimmune diseases struggle with diagnosis, costs, and inattentive care
After years of debilitating bouts of fatigue, Beth VanOrden thought she finally 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, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones the body needs to regulate metabolism.
There is no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started 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 resolve. But for others, like VanOrden, the drug isn’t as effective.
For her, that meant traveling 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,” said VanOrden, 38, explaining that her symptoms are not visible. “But there’s a hole in my gas tank,” she said. And “stress widens the gap.”
Autoimmune diseases arise 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 are more than 80 such diseases, affecting an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases in the US is estimated at over $100 billion per year
Despite their frequency, finding help for many autoimmune diseases can be frustrating and expensive. Getting diagnosed can be a major hurdle because the set of symptoms is very similar to those of other medical conditions, and there are often no definitive identifying tests, says Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta . . In addition, some patients feel like they have to fight to be believed, even by a doctor. And after a diagnosis, many autoimmune patients rack up big bills while they explore treatment options.
“They’re often upset. Patients feel rejected,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, says of some patients who come to her for help.
Inadequate medical education and a lack of investment in new research are two factors hindering the general understanding of hypothyroidism, according to Antonio Bianco, an endocrinologist at the University of Chicago and leading expert on the condition.
Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We’re going to have to remain open to the possibility that we’re missing something here,” he said.
Jennifer Ryan, 42, said she has spent “thousands of dollars out of pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident, who was diagnosed with Hashimoto’s after years of fatigue and weight gain, because her levels appeared normal. She recently changed doctors and is hoping for the best.
“You don’t walk around in pain all day and there’s nothing to worry about,” Ryan said.
And health insurers typically deny coverage for new treatments for hypothyroidism, says Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which treats patients from all fifty states. “Insurance companies want you to use the generics, even though many patients don’t do well with these treatments,” she said.
Meanwhile, the extent of America’s thyroid problems is reflected in drug sales. Levothyroxine is among the five most prescribed medications in the US each year. Yet research suggests the drug is overprescribed to people with mild hypothyroidism.
A recent study paid for by AbbVie – maker of Synthroid, a branded version of levothyroxine – found that a database of medical and pharmacy claims found that the prevalence of hypothyroidism, including milder forms, has risen from 9.5% of Americans in 2012 to 11.7%. in 2019.
The number of people diagnosed will increase as the population ages, McAninch said. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could explain some of that increase, she said.
In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens and symptoms. Some online platforms provide information that is questionable at best, but overall, social media has increased patients’ understanding of difficult-to-resolve symptoms, Bianco said.
They also encourage each other.
VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Keep standing up for yourself. There is a doctor somewhere who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction 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 patients with hypothyroidism, but greater recognition of them and their symptoms would help fund research, Bianco said.
“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”
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