Thyroid eye disease (TED) is complicated, with symptoms that can vary from person to person. It’s not widely understood — even by healthcare providers in some cases. Research indicates that it’s commonly misdiagnosed. As a result, there’s a lot of misinformation surrounding this chronic condition.
“Over the past few years, with the advent of pharmaceutical therapy for thyroid eye disease, it’s a little more in the forefront. With the marketing and ads on TV, it’s become more commonly discussed, and people are more aware of it,” says Allison Coombs, DO, director of oculofacial plastic, reconstructive, and orbital surgery at Manhattan Eye, Ear & Throat Hospital in New York City. “That said, a good chunk of people have either never heard of it before or have preconceived notions about TED. … There’s a lack of understanding about the disease.”
She says several common myths persist, ranging from who the disease affects to what symptoms it can include. Here are some common myths about TED and the facts behind them.
1. Myth: TED Affects the Eyes Only
While TED primarily affects the eyes — causing symptoms such as bulging (called proptosis), dryness, irritation, and redness — the effects don’t always stop there. “It’s an autoimmune disease, which can significantly affect many parts of the body,” says Dr. Coombs. For instance, she explains, if there’s a thyroid imbalance, there can be swelling in the hands or shins.
In addition to these varied physical manifestations, thyroid eye disease often affects people emotionally. “The most overlooked effects are changes to mental health. There’s a huge psychiatric component,” says Coombs. “When someone’s appearance changes, and they don’t feel like themselves anymore, it’s very hard.”
That said, the disease’s impact is different for everyone. It’s also possible to have isolated TED that doesn’t affect other parts of the body.
2. Myth: Only People With Graves’ Disease Get TED
It’s true that about two-thirds of people with TED also have Graves’ disease, according to the National Eye Institute. But other autoimmune thyroid diseases can also cause TED, she says. For instance, Hashimoto’s thyroiditis is seen in about 10 percent of people with TED.
Moreover, TED can develop even in people who have normal thyroid function, an underactive thyroid (hypothyroidism), or had their thyroid removed. “Colloquially, we consider this very much a Graves’ disease clinical spectrum, but it’s a distinct condition,” Coombs adds.
This visible symptom of TED might be the most well known and affects just over half of people with the disease.
“The most recognizable, feared, and memorable symptom is that really bulging eye, but you [may not] have that. There’s a whole spectrum of symptoms,” Coombs notes. Another related (but different) symptom is eyelid retraction, where one eyelid sits higher than the other.
4. Myth: TED Is Always Severe
The disease can vary in severity and progression, and many people experience only mild symptoms. In fact, just a quarter of people with inflammatory TED and only 5 percent of those with noninflammatory TED have severe symptoms. “There’s a whole spectrum of symptoms,” says Coombs. “They can be very subtle and nuanced. Simple irritation and some types of redness can be early signs of TED.”
5. Myth: TED Affects Women Only
It’s true that women are more likely to be diagnosed with thyroid eye disease. The prevalence of TED is five times higher in women than in men, according to the American Academy of Ophthalmology. That said, men can also develop the condition and may have more severe symptoms. “Men may also have more visual complications,” says Coombs. Doctors have not yet found clear and definitive reasons for this disparity though.
6. Myth: The Right Treatment Regimen Can Cure TED
There’s no permanent cure for TED, and even with the right regimen, there’s a 5 to 10 percent chance you may experience another flare-up during your lifetime. While that may be a sobering reality, it’s also important to keep in mind that the sooner you’re diagnosed and monitored by a doctor, the greater your chances of lessening the damage done by the disease, says Coombs. “There are things we can do to modulate the disease.”
7. Myth: People With TED Never Look the Same Again
“You may think you’re going to be disfigured forever, but you’re not always going to have bulging eyes or lid retraction,” says Coombs. But you might experience these physical symptoms for a year or so, which can seem like a long time not to feel like yourself. The disease will run its course, and your doctor may be able to suggest treatment options that can help. “We can get to a place where it’s safe to do surgery and rehabilitate people and get them to look pretty normal again,” she says. “There is hope.”
The Takeaway
Thyroid eye disease is often misunderstood, and many myths about the prognosis, symptoms, and treatment persist.
Myths about the chronic condition include the misconception that TED develops only in women or people with Graves’ disease.
The best way to get the facts about TED is to discuss any questions and concerns with your doctor.
EDITORIAL SOURCES
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Resources
Smith TJ et al. How Patients Experience Thyroid Eye Disease. Frontiers in Endocrinology. November 8, 2023.
Wang Y et al. Inflammatory and Noninflammatory Thyroid Eye Disease: Comparison of Disease Signs, Symptoms, and Quality of Life in Patients in the United States. Endocrine Practice. September 2022.
Tamhankar MA et al. The Burden of Illness in Thyroid Eye Disease: Current State of the Evidence. Frontiers in Ophthalmology. April 16, 2025.
Oeverhaus M et al. Influence of Biological Sex, Age and Smoking on Graves’ Orbitopathy — A Ten-Year Tertiary Referral Center Analysis. Frontiers in Endocrinology. April 3, 2023.
He earned his medical degree from Dartmouth. He completed an ophthalmology residency at the NYU Grossman School of Medicine, where he was chief resident, followed by a fellowship in uveitis and ocular inflammatory disease at the Francis I. Proctor Foundation for Research in Ophthalmology at the University of California in San Francisco.
Dr. Tsui is committed to advancing the field of ophthalmology. His research focuses on utilizing state-of-the-art ophthalmic imaging technology to improve the diagnosis and monitoring of uveitis. He is a co-investigator in several multicenter clinical trials investigating therapeutics for uveitis. He is the author of over 80 peer-reviewed publications and has given talks at national and international conferences.
Along with his clinical and research responsibilities, Tsui teaches medical students and residents. He is on the Association for Research in Vision and Ophthalmology's professional development and education committee, as well as the advocacy and outreach committee, which seeks to increase funding and awareness of vision research. He also serves on the editorial board of Ophthalmology and the executive committee of the American Uveitis Society.
Laurel Leicht has been a writer and editor for nearly two decades. A graduate of the College of William and Mary and the master's program at the Missouri School of Journalism, she covers a wide range of health and fitness topics, including breast cancer, various chronic conditions, mental health, and cardiovascular health.
