How hypothyroidism mystifies doctors and patients : Shots

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KFF Health News journalist Andy Miller manages the symptoms of his hypothyroidism with a daily pill. When he started researching it, he found out he is one of the lucky ones. Some people affected by the condition struggle to get a diagnosis or don’t respond well to treatment. Miller interviewed endocrinologists and several patients their symptoms and experiences living with an underactive thyroid. Their stories reveal how mystifying thyroid and autoimmune conditions can be.

The panel reads "about 25 years ago, I was overcome by constant fatigue," and shows him exhausted, lying in bed. The following panel reads, "even though I slept 10 to 12 hours a night, I would still wake up tired!" and shows him holding an alarm clock with spinning hands. "My voice dropped to Darth Vader-like depths ... and my kids were worried about me, which added to my alarm."
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The panel reads "about 25 years ago, I was overcome by constant fatigue," and shows him exhausted, lying in bed. The following panel reads, "even though I slept 10 to 12 hours a night, I would still wake up tired!" and shows him holding an alarm clock with spinning hands. "My voice dropped to Darth Vader-like depths ... and my kids were worried about me, which added to my alarm."
"My doctor was initially stumped, too. Then a friend suggested it could be a..." and leads into a large arc of text that says, "thyroid problem" above a drawing of Miller's neck and head. The thyroid, a butterfly-shaped gland in the neck, is highlighted. "The thyroid gland releases hormones that regulate metabolism. When not enough thyroid hormone is produced, it causes hypothyroidism."
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"My doctor was initially stumped, too. Then a friend suggested it could be a..." and leads into a large arc of text that says, "thyroid problem" above a drawing of Miller's neck and head. The thyroid, a butterfly-shaped gland in the neck, is highlighted. "The thyroid gland releases hormones that regulate metabolism. When not enough thyroid hormone is produced, it causes hypothyroidism."
Miller holds a prescription in one hand and a bottle of thyroid hormone medication in the other. The prescription reads, "after running a test, my doctor prescribed a thyroid hormone medication." Below, Miller is drawn with butterfly wings on his back, "It was like a switch turned back on! The pill restored my energy! My voice returned to normal!"
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Miller holds a prescription in one hand and a bottle of thyroid hormone medication in the other. The prescription reads, "after running a test, my doctor prescribed a thyroid hormone medication." Below, Miller is drawn with butterfly wings on his back, "It was like a switch turned back on! The pill restored my energy! My voice returned to normal!"
"Levothyroxine, a synthetic thyroid hormone, is among the most prescribed drugs in the U.S." Beneath the text is a pattern of pill bottles. On top of the bottles is a map of the U.S., with text that reads "That's about... 100 million prescriptions annually! But why??" The following text says, "hypothyroidism is most commonly caused by an autoimmune condition. It's called Hashimoto's disease."
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"Levothyroxine, a synthetic thyroid hormone, is among the most prescribed drugs in the U.S." Beneath the text is a pattern of pill bottles. On top of the bottles is a map of the U.S., with text that reads "That's about... 100 million prescriptions annually! But why??" The following text says, "hypothyroidism is most commonly caused by an autoimmune condition. It's called Hashimoto's disease."
Miller looks at two other people he interviewed: a doctor and a patient with hypothyroidism. "I talked with doctors and patients and found out I was one of the lucky ones. While generic levothyroxine works for me, it doesn't work for everyone." Another interviewee is seen, Beth VanOrden, a teacher. She is lying on a couch and says, "I would crash for 3 hours on the couch after school."
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Miller looks at two other people he interviewed: a doctor and a patient with hypothyroidism. "I talked with doctors and patients and found out I was one of the lucky ones. While generic levothyroxine works for me, it doesn't work for everyone." Another interviewee is seen, Beth VanOrden, a teacher. She is lying on a couch and says, "I would crash for 3 hours on the couch after school."
The first panel shows a rendering of Misty, of South Carolina, digging out from beneath a pile of medical bills. She says, "I have about $6,000 in unpaid hospital and medical bills over the past two years." In the panel below, Jennifer Silvestri, of New York, is seen. She's pictured having blood drawn while saying, "managing pregnancy with hypothyroidism can be difficult. I hope to have a baby."
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The first panel shows a rendering of Misty, of South Carolina, digging out from beneath a pile of medical bills. She says, "I have about $6,000 in unpaid hospital and medical bills over the past two years." In the panel below, Jennifer Silvestri, of New York, is seen. She's pictured having blood drawn while saying, "managing pregnancy with hypothyroidism can be difficult. I hope to have a baby."
The comic's illustrator, Oona Tempest, is seen. "Even our illustrator has faced challenges. Her symptoms began at 22, far below the average age of onset. Doctors didn't initially pick up on the cause." The doctor says, "Hmmm ... you're fine," while scratching his chin. She says, "but I am soOoO tired." "By the time they did, her thyroid was beyond repair. She is taking thyroid meds for life."
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The comic's illustrator, Oona Tempest, is seen. "Even our illustrator has faced challenges. Her symptoms began at 22, far below the average age of onset. Doctors didn't initially pick up on the cause." The doctor says, "Hmmm ... you're fine," while scratching his chin. She says, "but I am soOoO tired." "By the time they did, her thyroid was beyond repair. She is taking thyroid meds for life."
Miller says, "all these conversations pointed to a need for more research, education, and support related to these often-mystifying conditions. But despite these gaps, there's more awareness of hypothyroidism and of autoimmune diseases in general ... which is in part prompted by social media and the internet, where people are speaking up about their conditions."
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Miller says, "all these conversations pointed to a need for more research, education, and support related to these often-mystifying conditions. But despite these gaps, there's more awareness of hypothyroidism and of autoimmune diseases in general ... which is in part prompted by social media and the internet, where people are speaking up about their conditions."

To learn more about the challenges facing patients with hypothyroidism and other autoimmune conditions, as they seek diagnoses and effective treatments, read this related story.

Illustrations by Oona Tempest. Creative direction and editing by KFF Health News’ Hannah Norman, with additional editing by Sabriya Rice. Copy editing by Terry Byrne of KFF Health News.

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