After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto鈥檚 disease, an autoimmune disorder.
For her and millions of other Americans, that鈥檚 the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn鈥檛 produce enough of the hormones needed for the body to regulate metabolism.
There鈥檚 no cure for Hashimoto鈥檚 or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.
Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.
For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.
鈥淚 look and act like a pretty energetic person,鈥 said VanOrden, 38, explaining that her symptoms are not visible. 鈥淏ut there is a hole in my gas tank,鈥 she said. And 鈥渟tress makes the hole bigger.鈥
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 , affecting up to an estimated , disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than in the U.S.
Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said 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 a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.
鈥淭hey鈥檙e often upset. Patients feel dismissed,鈥 Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.
Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.
Some patients become angry when their symptoms don鈥檛 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. 鈥淲e will have to remain open to the possibility that we鈥檙e missing something here,鈥 he said.
Jennifer Ryan, 42, said she has spent 鈥渢housands of dollars out-of-pocket鈥 looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident 鈥 diagnosed with Hashimoto鈥檚 after years of fatigue and weight gain 鈥 because her levels appeared normal. She recently switched doctors and hopes for the best.
鈥淵ou don鈥檛 walk around hurting all day long and have nothing wrong,鈥 Ryan said.
And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. 鈥淚nsurance companies want you to use the generics even though many patients don鈥檛 do well with these treatments,鈥 she said.
Meanwhile, the extent of Americans鈥 thyroid problems can be seen in drug sales. Levothyroxine is among the medications in the U.S. every year. Yet of the drug for those with mild hypothyroidism.
, paid for by AbbVie 鈥 maker of Synthroid, a brand-name version of levothyroxine 鈥 said a medical and pharmacy claims database 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 rise as the population ages, said McAninch. Endocrine disruptors 鈥 natural or synthetic chemicals that can affect hormones 鈥 could account for 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 offer information that鈥檚 dubious at best, but overall, social media outlets have increased patients鈥 understanding of hard-to-resolve symptoms, Bianco said.
They also offer one another encouragement.
VanOrden, who has been active on Reddit, has this advice for other patients: 鈥淒on鈥檛 give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.鈥 She has started an alternative treatment 鈥 desiccated thyroid medication, an option not approved by the FDA 鈥 plus a low dose of the addiction drug naltrexone, though the data is limited. She鈥檚 feeling better now.
Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn鈥檛 fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.
鈥淚 would like a very clear, solid acknowledgment that these patients exist,鈥 he said. 鈥淭hese people are real.鈥
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