If you've received a diagnosis of thyroid eye disease (TED), you may have a lot of questions about the condition — and what lies ahead. TED is an autoimmune disease in which your immune system mistakenly attacks the muscles and tissues around your eyes, leading to symptoms such as eye puffiness, eye bulging, and painful, dry, red, irritated eyes.
Are you wondering where you go from here? Read on for answers to eight common questions.
1. Does Thyroid Eye Disease Only Affect People With Graves’ Disease?
Graves’ disease is an autoimmune condition in which the immune system attacks the thyroid gland, causing it to produce too much thyroid hormone. While other health conditions can cause it, Graves’ ophthalmopathy, or thyroid eye disease, usually occurs in people who have Graves’ disease. More than one-third of people who have Graves’ disease will develop TED.
While Graves’ disease doesn’t directly cause TED, it’s thought that the body attacks certain proteins in the eyes and thyroid gland, possibly because they “look” similar to the immune system.
Among the general population, thyroid eye disease is considered a rare condition. It affects about 1 in 6,250 women and 1 in 34,483 men.
If you have TED, even if you have normal thyroid levels, you may develop Graves’ disease in the future, says Rao Chundury, MD, an assistant professor and ophthalmic plastic and reconstructive surgeon at the University of Nebraska Medical Center Truhlsen Eye Institute in Omaha. In this case, your endocrinologist will likely want to test your thyroid hormone levels every six months, he says.
2. What Are the Best Treatments Available Today for Thyroid Eye Disease?
Thyroid eye disease symptoms can range from mild to severe, and there are a number of treatments to address it, based on the level of disease. Some of these include:
Corticosteroids to lower inflammation and suppress the immune system
Biologic medication, such as teprotumumab, an insulin-like growth factor-1 receptor inhibitor that treats proptosis (eye bulging). It was the first treatment approved by the U.S. Food and Drug Administration (FDA) for the treatment of thyroid eye disease.
Surgery that targets the eyelids, eye muscles, or bones around the eyes. Each type of surgery has its own role: Eyelid surgery can help improve eyelid retraction, surgery to eye muscles can address double vision, and orbital decompression helps the eye fall back into the socket to reduce bulging.
Lifestyle changes, including sunglasses, eye drops, and prescription Fresnel prisms for your eyeglasses, can improve sight and eye comfort.
3. How Will I Find a Treatment That Works for Me?
You and your doctors will work together closely to find a treatment that will ease your symptoms of both thyroid eye disease and Graves’ disease (if you have it). For example, your endocrinologist will monitor and help you manage your thyroid levels and symptoms, and your ophthalmologist will do the same for the eye disease.
It’s important for the process to be collaborative, because treating one condition may cause changes to the other condition. For example, “Radioactive iodine [therapy for Graves’] has been shown to make thyroid eye disease worse in some patients,” Dr. Chundury says.
Beyond ensuring that your treatments for Graves’ disease and TED align, your doctor will determine the best course of therapy based on severity. “For mild disease, sometimes just artificial tears and diet modification can help,” Chundury explains. “For more severe disease, other immunomodulatory therapies may be considered, such as [the corticosteroid] prednisone or teprotumumab — or sometimes orbital radiation.” Surgery, such as orbital decompression, may be used in severe cases.
4. If I’m Prescribed Medication, How Long Can I Expect to Take It?
This is unique to every patient, so talk to your doctor, who can provide clearer expectations based on the severity of your disease, as well as how it may affect or be affected by treatment for your thyroid. For example, if you are put on teprotumumab to decrease eye bulging, you would have about eight infusions — one every three weeks.
What’s important, says Chundury, is that you track your progress with the ophthalmologist who is treating your eye disease. Depending on how it progresses or improves, treatments can be scaled up or down.
5. Will Thyroid Eye Disease Get Better With Treatment — or Progressively Worse?
Even though everyone has a unique experience with TED, doctors can give you a general idea of how things will be, moving forward. “During the course, there will be an initial worsening and inflammation, which will then reach a peak and stabilize, followed by improvement,” Chundury says. Treatment is targeted at reducing the inflammation in hopes that the peak will be lower and the disease milder. People with more moderate or severe disease may always experience some symptoms, he adds.
Work closely with your ophthalmologist and endocrinologist to treat both the eye and thyroid disease, if present. Establishing treatment and regular follow-ups for adjustments, when needed, will give you the best chance at improvement.
6. Can I Do Anything to Keep My Symptoms From Getting Worse or Make My Symptoms Better?
If you smoke, quit, because your symptoms may disappear sooner, says Chundury. “The classic presentation of thyroid eye disease has about an 18-month course in nonsmokers and up to three years in smokers,” he says.
Smoking can not only make it harder to achieve remission, but also lead to more severe symptoms, generally. A study found that smokers are more than twice as likely to need orbital decompression surgery and 1.7 times as likely to need eyelid recession compared with people who have never smoked. The research also said that former smokers are at a lower risk of needing these surgeries, which means quitting can benefit you.
If you smoke or are around secondhand smoke, now’s the time to ask your doctor for resources that can help you quit — or avoid secondhand smoke. You can also call 800-QUIT-NOW.
7. When Should I Seek Immediate Medical Attention?
Symptoms such as nerve compression, corneal ulcers, and vision loss can occur in severe cases of TED. Seek immediate medical attention if you experience any of the following symptoms.
You have blurred vision that does not improve with blinking or covering the other eye.
Colors do not appear as bright as usual or there is a difference in color perception with each eye.
You have double vision.
Increased eye bulging means you're unable to close your eye.
Your symptoms get worse over a period of several days or weeks.
8. Is Thyroid Eye Disease Hereditary? Did I Get This From My Parents, and Will I Pass It on to My Children?
You won’t necessarily pass thyroid eye disease to your children, but “research suggests there is a genetic component to thyroid eye disease. However, the inheritance pattern of the disease remains unclear,” Chundury says. It’s true that autoimmune diseases tend to run in families. And, in the case of TED, people who have the eye disease may carry genes for it or have a genetic susceptibility to it.
Even if you have the genes, that doesn’t necessarily mean your child will develop TED, in part because the condition can be triggered by environmental factors — and not everyone who’s genetically susceptible to TED will be exposed to those triggers.
The Takeaway
Thyroid eye disease (TED) is an autoimmune condition primarily affecting those with Graves' disease, causing symptoms including inflammation, eye bulging, and discomfort.
Treatment methods for TED depend on severity and may include corticosteroids, biologic medication like teprotumumab, surgery, and lifestyle changes. Collaboration between your endocrinologist and ophthalmologist is crucial since treatment for thyroid issues can affect TED and vice versa.
Consider quitting smoking. It can greatly benefit TED management, because smokers tend to face prolonged and more severe symptoms, and are more likely to require surgical intervention.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Oke I et al. Smoking Is Associated With a Higher Risk of Surgical Intervention for Thyroid Eye Disease in the IRIS Registry. American Journal of Ophthalmology. May 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.
Jessica Migala is a freelance writer with over 15 years of experience, specializing in health, nutrition, fitness, and beauty. She has written extensively about vision care, diabetes, dermatology, gastrointestinal health, cardiovascular health, cancer, pregnancy, and gynecology. She was previously an assistant editor at Prevention where she wrote monthly science-based beauty news items and feature stories.
She has contributed to more than 40 print and digital publications, including Cosmopolitan, O:The Oprah Magazine, Real Simple, Woman’s Day, Women’s Health, Fitness, Family Circle, Health, Prevention, Self, VICE, and more. Migala lives in the Chicago suburbs with her husband, two young boys, rescue beagle, and 15 fish. When not reporting, she likes running, bike rides, and a glass of wine (in moderation, of course).
