It can be difficult to treat a complicated autoimmune disorder such as thyroid eye disease, which is why you may need to recruit multiple doctors and experts to your healthcare team if you have the condition.
Thyroid eye disease is also known as Graves’ ophthalmopathy, in part because it commonly goes hand in hand with Graves’ disease, which causes an overactive thyroid. In many cases, both diseases need to be treated at the same time. People with mild cases may experience redness, tearing, and dry eye due to inflammation, while people in the later stages can experience eye bulging (proptosis) and even vision loss.
Thyroid eye disease “is a very challenging disease for patients, because it changes the way they look, see, and feel,” says Andrea Kossler, MD, an associate professor of ophthalmology at Stanford University Medical Center in Palo Alto, California.
“Up until recently, patients didn’t have the support, enough resources, and doctors who knew how to properly treat them,” says Dr. Kossler. In recent years, though, there has been a renewed focus on the condition, as well as new treatments developed for it.
Here are a few experts who can help treat thyroid eye disease.
1. A Primary Care Physician to Organize Your Care
Your primary care physician may be your main point of care if you have Graves’ disease. They will also refer you to an ophthalmologist for more comprehensive eye care and generally keep track of your care and the medications you might be taking.
2. An Ophthalmologist to Monitor Your Eyes for Changes
No matter what stage — mild, moderate, or severe — your disease is in, “if someone has Graves’, they should be seeing an ophthalmologist to get a baseline eye exam,” says Madina Falcone, MD, the director of oculoplastics and orbital surgery at University of Connecticut Health in Farmington. Your ophthalmologist will recommend an appropriate interval for exams and watch for any disease progression in your eyes.
3. A Thyroid Eye Disease Specialist for Moderate to Severe Cases
If your disease advances to moderate or severe, Dr. Falcone recommends seeing an ophthalmologist who specializes in thyroid eye disease or an oculoplastic and reconstructive surgeon. They will develop a treatment plan that’s best for you.
4. An Endocrinologist to Manage Your Thyroid Hormone Levels
An endocrinologist, who specializes in treating hormone conditions, can help you balance your thyroid hormones, even though doing so doesn’t treat or correct the symptoms of thyroid eye disease, such as eye bulging. “An endocrinologist will monitor a patient’s hormone levels and make sure that they get to a stable thyroid state,” says Falcone.
5. An Ear, Nose, and Throat Doctor and an Oculoplastic Surgeon for Emergency Treatment
A sudden flare of severe thyroid eye disease can cause vision loss. That’s because the enlarged fat and muscle tissues surrounding the eyes can push the eyeball so far forward that it compresses the optic nerve, which tethers the eyeball to the brain.
“When patients come in with really severe disease and are actively losing their vision, you don’t have time to waste,” says Falcone. In that instance, an oculoplastic surgeon might work with an otolaryngologist (ear, nose, and throat doctor) to perform decompression surgery, she says.
“The goal of surgery is to remove some of the bony structures behind and around the eye, creating room in order to release pressure around the optic nerve,” says Falcone. Later, your surgeon might correct any eyelid sagging caused by stretching due to eye bulging.
6. A Smoking Cessation Expert to Help You Quit, if Needed
“Smoking cigarettes is one of the biggest risk factors for developing and worsening of the disease,” says Kossler. If you have been diagnosed with Graves’ disease or thyroid eye disease, make a plan right away for how you’ll quit. A good place to start is the Centers for Disease Control and Prevention’s quitline for free, over-the-phone, nonjudgmental coaching. The hospital or medical center that’s treating your eye disease may also be able to recommend a smoking cessation program.
7. A Mental Health Professional to Help You Process Changes Related to the Disease
If your thyroid eye disease leads to eye bulging or the “thyroid stare,” where bulging keeps the eyelids open in such a way that it looks like you’re staring, it may be difficult to emotionally process the changes to your appearance.
As worried as you may be about your diagnosis, keep in mind that there are ways to treat thyroid eye disease. “I want patients to feel reassured that there are good treatment options to get them looking and feeling [more] like they did before,” says Kossler. “Help is on the way.”
The Takeaway
- Recruiting a variety of healthcare professionals, such as an endocrinologist, ophthalmologist, and mental health professional, can provide comprehensive care for both your thyroid eye disease and its impact on your eyes and emotional health.
- Immediate medical attention from an oculoplastic surgeon and otolaryngologist is crucial in severe cases where eye bulging leads to vision loss risk through optic nerve compression.
- Quitting smoking can significantly reduce the risk of developing or worsening thyroid eye disease, so smoking cessation resources can be a helpful part of your treatment plan.