8 Thyroid Eye Disease Myths, Busted

Because TED is sometimes called Graves’ eye disease or Graves’ ophthalmopathy, that makes it sound like the condition is synonymous with Graves’ disease itself, but this is untrue. According to the National Institute of Diabetes and Digestive and Kidney Diseases, Graves’ disease is an autoimmune disorder that can cause an overactive thyroid—and since your thyroid hormone controls the way your body uses energy, this condition can affect any organ in the body. That includes your eyes, so having Graves’ increases your risk of TED—but the two are not the same.

Penn Medicine reports that only about a quarter of people with Graves’ develop TED before, during, or after a thyroid disorder diagnosis. “There is a persistent assumption that TED is exclusive to those with Graves’, but while hyperthyroidism is certainly the most common association for TED, around 10% of patients with the condition have low or normal thyroid levels,” says Alexander Solomon, M.D., a surgical neuro-ophthalmologist at Providence Saint John’s Health Center in Santa Monica, CA. Still, if you have thyroid issues, talk to your doctor about potential eye involvement, he advises.

Diabetic macular edema (DME) and TED have some shared risk factors, like a family history of autoimmune diseases, per 2022 research in the journal Endocrine Practice. Also, people with diabetes can develop TED—and in a more severe way—because of vascular issues related to diabetes. However, they’re not the same. DME is a complication of diabetes (Types 1 and 2) in which poor blood glucose control damages small blood vessels in the body, including the eyes, while TED is an autoimmune issue, so it stems from your immune system attacking healthy tissues, including behind your eyes.

Although TED can flare and go into remission, that doesn’t mean it will heal without any medical intervention. “Treatment for TED ranges from lifestyle changes to medication including biologics and steroids, as well as radiation therapy and surgery, such as correction of the orbital bones, eye muscles, or eyelids,” explains Michelle Maeng, M.D., an assistant professor of ophthalmology and visual science at Yale School of Medicine in New Haven, CT. “For those with underactive or overactive thyroids, reversing thyroid dysfunction can ease TED, as well.”

Unlike some conditions that don’t have a clear cause, it’s well-established that TED is kicked off by the same antibodies that can trigger the thyroid to change its hormone production. “That leads to changes in the soft tissues of the eye socket, which can push the eye forward,” says Dr. Solomon. The risk factors are also known, per the American Thyroid Association: smoking, treatment with radioactive iodine, family history of TED or another autoimmune disease, older age, poorly controlled hyper- and hypothyroidism, and being female.

Even for those who’ve been living with TED for several years, newer medical treatments are providing meaningful options, according to Dr. Solomon. “This is now a treatable disease, thanks to new biologics that can decrease the severity and even, in some cases, reverse the effects of the disease on the eye socket,” he says. “Even mild cases should be evaluated by an ophthalmologist, preferably with training in neuro-ophthalmology, to discuss treatments for symptoms that could be attributed to their disease.”

Treatment of TED depends entirely on the severity of what you’re experiencing, says Dr. Solomon. A mild case of thyroid eye disease may need only artificial tears or ointment. A more moderate case with double vision can lead to use of prism glasses, or an infusion of antibodies that can slow, halt, or reverse the underlying changes in the eye socket. “A severe case may need close monitoring and even potentially emergent treatment with steroids and surgeries if there is threat of permanent vision changes,” he adds.

“The emotional and psychological impact of TED should not be understated,” says Dr. Maeng. “This disease can have a profound impact on one’s mental health, sense of self, and confidence.” Research in the journal Endocrine Connections found that the prevalence of depression and anxiety disorders in people with TED was estimated to be as high as 33% and 41%, respectively. “I encourage patients to seek out TED support groups, either in person or online, as the emotional support and information sharing can be valuable on many levels,” advises Dr. Maeng.

If you have TED, or you’re caring for someone who does, you may have heard some of these common misconceptions—even from your own friends and family. Which can make it more difficult to deal with the emotional and physical health effects of the condition, which can already be challenging for people with this eye disorder. That’s why it’s helpful to keep educating yourself about the condition and also share your TED knowledge with others, says Dr. Maeng. Together, we can put these myths where they belong: in the past.