After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had found the answer to her problems when she was diagnosed in 2016 with Hashimoto’s disease, an autoimmune disorder.
For VanOrden, as for millions of Americans, that is the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, does not produce enough hormones needed for the body to regulate metabolism.
There is no cure for Hashimoto’s disease 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 disappear. However, for others, like VanOrden, the drug is not as effective.
For the woman, it meant going from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.
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“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,” he said. And “stress makes the hole bigger.”
Autoimmune diseases occur when the immune system attacks and damages healthy cells and tissues by mistake. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting about 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases in the country is estimated at more than 100 billion a year.
Despite being very common, finding help for many autoimmune diseases can be frustrating and expensive. Receiving a diagnosis can be a major hurdle because the range of symptoms closely resembles that of other conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at the School of Medicine. Emory University in Atlanta.
Additionally, some patients feel like they have to fight to be believed, even by their doctor. And after a diagnosis, they spend fortunes exploring treatment options.
“They are often upset. Patients feel unappreciated” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.
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Insufficient medical education and a lack of investment in new research are two factors that hinder the general understanding of hypothyroidism, according to Antonio Bianco, an endocrinologist at the University of Chicago and a leading expert on the condition. Some patients get angry when their symptoms don’t respond to standard treatments, whether levothyroxine alone or in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we are missing something here,” he said.
Jennifer Ryan, 42, said she has spent “thousands of dollars out of pocket” searching for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident diagnosed with Hashimoto’s after years of fatigue and weight gain, because her levels seemed normal. She recently changed doctors and is hopeful.
“You’re not hurting all day and there’s nothing wrong with you,” Ryan said.
And health insurers They often deny coverage for new treatments for hypothyroidismsaid Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which serves patients from all 50 states. “Insurance companies want generics to be used even though many patients do not do well with these treatments,” she said.
Meanwhile, the magnitude of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications each year in the country. However, research points to overprescription of the drug in people with mild hypothyroidism.
A recent study, funded by AbbVie (maker of Synthroid, a brand-name version of levothyroxine) said a database of medical and pharmaceutical claims showed that the prevalence of hypothyroidism, including milder forms, 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 said. Endocrine disruptors (natural or synthetic chemicals that can affect hormones) could explain some of that increase, he said.
In their search for answers, patients sometimes go online, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that is dubious 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. Continue to be your own advocates. Somewhere there is a doctor who will listen to you“. She has started an alternative treatment (dissected thyroid medication, an option not approved by the FDA) plus a low-dose naltrexone, an addiction drug, although data are limited. Now he’s feeling better.
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Research into autoimmune thyroid disease is underfunded, so the underlying causes of immune dysfunction are not well studied, Henderson said. He establishment Patients with hypothyroidism who are difficult to treat have not been fully recognized by doctors, but greater recognition of them and their symptoms would help fund research, Bianco said.
“I would like a very clear and strong recognition that these patients exist,” he said. “These people are real.”
This story was produced by KFF Health News, a national newsroom focused on in-depth coverage of health issues, which is one of the main programs of KFFthe independent source for health policy research, polling and journalism.
