“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
3. Myth: Thyroid Eye Disease Always Causes Bulging Eyes
4. Myth: TED Is Always Severe
5. Myth: TED Affects Women Only
6. Myth: The Right Treatment Regimen Can Cure TED
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.
