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Thyroid eye disease (TED) is a condition that affects some people who have thyroid disorders. The most common thyroid disorder associated with TED is Grave’s disease (and TED is also known as “Grave’s ophthalmology”).
TED causes damage and inflammation to the muscles, connective tissues, and fatty tissues that surround the eyes. This damage and inflammation can result in a number of symptoms, including:
- Redness and itchiness
- Pain with movement
- Irritation (described as a gritty feeling)
- Sensitivity to light
- Dry eyes and/or watery eyes
- Eyes that bulge and protrude
- Double vision (caused by the eyes shifting out of alignment)
- Blindness (though it is not a common outcome)
TED typically occurs in two phases, an active phase followed by an inactive phase. During the active phase, tissues around the eyes are inflamed and symptoms are getting worse. During the inactive phase, inflammation subsides, but some symptoms may persist due to fibrosis (scar tissue) and structural changes around the eyes.
Getting treatment for TED
If you have TED, working with healthcare providers who have experience treating TED is the most important step you can take to protect the health of the eyes. TED is a different experience for everyone, and your healthcare providers will be your best source of information about your diagnosis and how to address your symptoms.
Your healthcare team for treating TED may include a number of healthcare providers, including:
- Ophthalmologist. At the top of the list is an ophthalmologist with training and experience in treating TED. This may be a general ophthalmologist, or a specialized ophthalmologist, such as an oculoplastic surgeon.
- Endocrinologist. People with TED must also manage the coexisting Grave’s disease (or other thyroid disorder), and treatment for this will likely be overseen by an endocrinologist.
- ENT (ear, nose, and throat) surgeon. If treatment for TED requires surgery, a healthcare team may include several surgeons with different specialties, such as an ENT surgeon.
- Primary care physician. While TED or a thyroid disorder can feel all-encompassing, it’s important to remember the other aspects of your health, such as vaccinations, bloodwork, and managing other health conditions.
- Mental health professional. TED and thyroid disorders are an emotional and mental burden for many. Consider adding a therapist, healthcare social worker, or other mental health professional to your healthcare team.
- Registered dietitian. People with thyroid disorders have special nutritional considerations (though there is no specific diet for conditions like Grave’s disease). Nutrition is also a focus of treatment for TED. Consider working with a registered dietitian who can help you create an eating plan that meets your nutritional needs.
Treatment will depend on your specific symptoms, the severity of those symptoms, and other considerations about your overall health. In the active phase of the disease, treatment may include medications and other therapies to reduce inflammation, steps to protect the eyes and ease symptoms, and lifestyle changes (such as reducing sodium intake and quitting smoking, if you smoke). There is also an infusion therapy that can help reduce eye bulging. In the inactive phase of the disease, treatment will often involve surgery to improve the appearance and function of the eyes.
It’s also important to seek treatment as early as possible. TED is a progressive disease—symptoms will get worse with time. Delaying treatment may result in further damage to the eyes and the need for more invasive treatments to repair that damage.
