Autoimmune disease patients face hurdles in diagnosis, costs and care: shots

Autoimmune disease patients face hurdles in diagnosis, costs and care: shots

There are 80 different autoimmune diseases, affecting up to 50 million Americans.

Ona Tempest/KFF Health News


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Ona Tempest/KFF Health News


There are 80 different autoimmune diseases, affecting up to 50 million Americans.

Ona Tempest/KFF Health News

After years of debilitating bouts of fatigue, Beth Van Orden finally thought she had a solution to her problems in 2016 when she was diagnosed with Hashimoto’s disease, an autoimmune disorder.

For her and millions of other Americans, it’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 disease or hypothyroidism. But Van Orden, who lives in Athens, Texas, started taking levothyroxine, a frequently prescribed synthetic thyroid hormone used to treat common symptoms, such as fatigue, weight gain, hair loss and sensitivity to cold.

Most patients cope well with levothyroxine and their symptoms disappear. However, for others, like Van Orden, the medication is not effective.

For her, this meant hopping from doctor to doctor, test to test, treatment to treatment, spending about $5,000 a year.

Beth Van Orden has Hashimoto’s disease, but the most common medication for it wasn’t effective for her. Her search for other treatments has proven costly.

Beth Van Orden


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Beth Van Orden


Beth Van Orden has Hashimoto’s disease, but the most common medication for it wasn’t effective for her. Her search for other treatments has proven costly.

Beth Van Orden

“I look and act like a very active person,” says Van Orden, 38, explaining that her symptoms are invisible. “But there’s a hole in my gas tank,” she says. “Pressure makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and destroys 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, most of whom are women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the United States

Despite their frequency, finding help for many autoimmune diseases can be frustrating and expensive. Getting a diagnosis can be a big hurdle because the range of symptoms is very similar to those of other medical conditions, and there are often no specific identifying tests in Atlanta, says Dr. Sam Lim, clinical director of the division of rheumatology at Emory University School of Medicine.

In addition, some patients feel they have to fight for the doctor to believe them. After diagnosis, many autoimmune patients face huge bills as they explore treatment options.

“They often feel uncomfortable,” Dr. Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, says of some of the patients who come to her for help. “The patients feel rejected.”

Inadequate medical education and a lack of investment in new research are factors that hinder a comprehensive 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, either levothyroxine or that drug with another hormone, says Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We have to remain open to the possibility that we are 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 medications for the Huntsville, Alabama, resident — who was diagnosed with Hashimoto’s disease after years of fatigue and weight gain — because her levels appeared normal. She has recently changed doctors and is hoping for the best.

“Don’t walk around in pain all day and nothing is wrong with you,” Ryan says.

Health insurance companies typically refuse to cover 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. “Insurers want you to use generic medications even though many patients don’t respond well to these treatments,” she says.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the United States each year. However, research suggests some overprescribing of the drug for those with mild hypothyroidism.

A recent study, funded by AbbVie — the maker of Synthroid, a branded version of levothyroxine — said a medical and pharmaceutical claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in In 2012 to 11.7%. In 2019.

McAninch says the number of people diagnosed will rise as the population ages. She says that endocrine disruptors — natural or synthetic chemicals that can affect hormones — could be responsible for some of this increase.

As they search for answers, patients sometimes connect on social media, asking questions and describing their thyroid hormone levels, medication regimen, and symptoms. Some online platforms offer questionable information at best, but overall, social media has increased patients’ understanding of difficult-to-resolve symptoms, Bianco says.

They also provide encouragement to each other.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Keep advocating for yourself. Somewhere out there is a doctor who will listen to you.” She started an alternative treatment — a desiccated thyroid medication, an option not approved by the Food and Drug Administration — as well as a low dose of the addiction drug naltrexone, though data are limited. She feels better now.

Research into autoimmune thyroid diseases receives little funding, so the underlying causes of immune dysfunction have not been well studied, Henderson said. The medical establishment has not fully recognized which hypothyroidism patients are difficult to treat, but increasing recognition of them and their symptoms would help fund research, Bianco says.

“I would like to have a clear and strong acknowledgment that these patients exist,” 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 core drivers of KFF – The independent source for health policy research, polling and journalism.

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