By Andy Miller - KFF Health News
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's the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland located in the neck, doesn't 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, which is used to treat common symptoms, such as fatigue, weight gain, hair loss and sensitivity to cold.
Autoimmune diseases, such as Hashimoto's disease or hypothyroidism, occur when the immune system mistakenly attacks and damages healthy cells and tissues. Oona Tempest/KFF Health News
Most patients do well with levothyroxine and their symptoms go away. However, for others, such as VanOrden, the drug is not as effective.
For the woman, it meant going from doctor to doctor, from trial to trial and from 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 his 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 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 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.
Beth VanOrden was diagnosed in 2016 with Hashimoto's disease, an autoimmune disorder. Beth VanOrden / Beth VanOrden
Despite being very common, finding help for many autoimmune diseases can be frustrating and costly. Receiving a diagnosis can be a major hurdle because the range of symptoms closely resembles other conditions and there are often no definitive identification tests, explained Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta.
In addition, some patients feel they have to fight to be believed, even by the doctor. And after a diagnosis, they spend fortunes exploring treatment options.
"They're often upset. Patients feel underserved," 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 overall understanding of hypothyroidism, according to Antonio Bianco, an endocrinologist at the University of Chicago and a leading expert on the condition. Some patients get upset when their symptoms don't respond to standard treatments, whether it's levothyroxine alone or 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" searching for answers. Doctors did not recommend thyroid hormone medication to the Huntsville, Alabama, resident diagnosed with Hashimoto's after years of fatigue and weight gain, because her levels appeared normal. He recently changed doctors and is hopeful.
"You don't go around hurting all day and there's nothing wrong with you," Ryan said.
And health insurers often deny coverage for new treatments for hypothyroidism, said 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 don't do well with these treatments," he said.
Meanwhile, the extent of Americans' thyroid problems can be seen in the sale of medications. Levothyroxine is among the top five most prescribed drugs each year in the country. However, research points to overprescribing 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, rose 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 log on to social media, 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 hard-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's a doctor who will listen to you." An alternative treatment (dissected thyroid medication, an option not approved by the FDA) plus a low dose of naltrexone, an addiction drug, has begun, although data are limited. He's feeling better now.
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Research into autoimmune thyroid disease receives little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment has not fully recognized patients with hypothyroidism who are difficult to treat, but greater recognition of them and their symptoms would help fund the research, Bianco said.
"I would like a very clear and robust 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 treatment of health issues, which is one of the main programs of KFF, the independent source for health policy research, polling and journalism.