Learn about prevention, symptoms and a promising new treatment for this autoimmune disease.
Thyroid eye disease is an autoimmune disease associated with the thyroid gland. The body mistakenly identifies tissue in the eye socket as foreign and then makes autoantibodies that attack those ocular tissues. Thyroid-related eye disease can cause changes to the appearance and feel of the eyes as well as affect vision. But new treatments for thyroid eye disease, such as teprotumumab, under the brand name Tepezza, can help.
“I think of thyroid eye disease as a very close cousin to the underlying autoimmune disease of the thyroid gland,” said Louise Mawn, M.D., an ophthalmic plastic surgeon at Vanderbilt Eye Institute. “Although it is associated with the disease of the gland, it is its own distinct entity that needs to be treated.”
Symptoms of thyroid eye disease
One symptom is a change to the appearance of the eyes. Commonly, eyes affected by thyroid eye disease look like they are staring, are too open, or are more prominent. The eyes or the eyelids may also be swollen or red. “Sometimes it is the patients’ family members who, after not seeing them for a while, notice the distinct changes in their eyes,” Mawn explained.
Patients themselves may notice excessive dryness and excessive tearing. They may also develop double vision or pain when moving their eyes, Mawn added.
Preventing thyroid eye disease
Preventing thyroid eye disease starts with keeping thyroid hormone levels in the normal range. “Thyroid stimulating hormone is typically checked at an annual physical examination,” Mawn explained. So seeing your primary care physician regularly is important.
But we can also work to optimize our immune system. “Follow the recommendation to get between 150 to 300 minutes of exercise a week and eat a healthy vegetable-based diet,” Mawn recommended. If you smoke, talk to your doctor about a cessation method that’s right for you.
New treatments for thyroid eye disease
A new medication called teprotumumab, under the brand name Tepezza, helps treat thyroid eye disease symptoms. Teprotumumab is a monoclonal antibody that targets insulin-like growth factor 1 (IGF-1).
“Insulin-like growth factor 1 is coupled — or married if you will — to thyroid stimulating hormone receptor,” Mawn explained. “So, by down-regulating the insulin-like growth factor 1 receptor, we then extinguish the fire of the thyroid eye disease-related changes and inflammation.”
“This is the first treatment of any kind that makes the eye muscles — which become enlarged in so many thyroid eye disease patients — go back to normal size and function. You can actually turn back the clock and put the person’s anatomy and function back to its pre-disease state.”
How TED treatment works
Patients receive an IV infusion of teprotumumab every three weeks, for a total of eight infusions over the course of 24 weeks. “This is the first treatment of any kind that makes the eye muscles — which become enlarged in so many thyroid eye disease patients — go back to normal size and function,” Mawn said. “You can actually turn back the clock and put the person’s anatomy and function back to its pre-disease state.” Before the availability of teprotumumab, Mawn said, patients with thyroid eye disease often had lifelong visual limitations as well as changes to their eye tissue.
Teprotumumab does have some potential side effects. People with inflammatory bowel disease may experience a worsening of their symptoms. Sometimes patients have an increase in blood sugar that may need treatment. Some people notice changes in their taste, smell or appetite, which could lead to weight loss. And some patients on teprotumumab may experience changes in hearing. “Those are all side effects or complications that we look closely for and make sure they are not realized,” Mawn said. Minor side effects may include fatigue or muscle spasms, both of which Mawn said are easy to treat.
When a patient requires treatment with a novel agent like teprotumumab, Vanderbilt has the infrastructure in place to manage testing, mitigate side effects and provide full service to the patient. “One of the really unique aspects of Vanderbilt’s treatment of patients with orbital disease, including thyroid eye disease,” she added, “is our ability to handle all these very complex, very challenging patients in a multidisciplinary setting.”
Need help for Thyroid Eye Disease?
The experts at the Vanderbilt Eye Institute treat a wide array of eye diseases that affect eye health and vision, including personalized, comprehensive care for Thyroid Eye Disease.