A complex autoimmune disorder like thyroid eye disease can be difficult to treat, which is why you may need to see multiple doctors and experts on your health care team if you have this condition.
Thyroid eye disease is also known as Graves’ ophthalmopathy, in part because it goes hand in hand with Graves’ disease, which causes hyperthyroidism. In many cases, both diseases need to be treated at the same time. People with mild cases may experience redness, tearing, and dry eyes due to the inflammation, while people in later stages may experience eye bulging (exophthalmos) and even vision loss.
Thyroid disease “is a very difficult disease for patients, because it changes the way they look, see, and feel,” says Andrea Kossler, MD, associate clinical professor of ophthalmology at Stanford University Medical Center in Palo Alto, California.
Furthermore, the condition is relatively uncommon. The National Organization for Rare Disorders (NORD) estimates that thyroid eye disease affects 16 out of 100,000 women and approximately 3 in 100,000 men.
“Until recently, patients didn’t have enough support, resources, and doctors who knew how to treat them properly,” says Dr. Kossler. In recent years though, there has been a renewed focus on the condition, as well as new treatments developed for it.
The key is to find a group of doctors who know how to manage and treat thyroid disease. “It’s important that they all work together,” Kossler says. “We need a dedicated team approach.” A study published in 2022 reports that about 90 percent of thyroid eye diseases are related to Graves’ disease and require multidisciplinary collaboration, including ophthalmology, endocrinology, and otolaryngology, because Graves involves different systems of the body.
Here are some experts who can help treat thyroid conditions.
1. A primary care doctor who can organize your care
Your primary care physician may be your main point of care if you have Graves’ disease. He or she will also refer you to an ophthalmologist for more comprehensive eye care and keep track of your overall care and medications you may be taking.
2. An ophthalmologist who can monitor changes in your eyes
No matter what stage—mild, moderate, or severe—of the disease you have, “if someone has Graves’ disease, they should see an ophthalmologist for a basic eye exam,” says Madina Falcone, director of oculoplastic and orbital plastic surgery at University of Connecticut Health in Farmington. . Your ophthalmologist will recommend an appropriate period of time for examinations and to monitor the progression of any disease in your eyes.
3. Thyroid disease specialist
If your disease progresses to moderate or severe, Dr. Falcon recommends seeing an ophthalmologist who specializes in thyroid eye conditions or an ocular plastic and reconstructive surgeon. They will develop an appropriate treatment plan for you.
4. An endocrinologist to manage thyroid hormone levels
An endocrinologist, who specializes in treating hormonal conditions, can help you balance thyroid hormones, although doing so does not treat or correct symptoms of thyroid eye disease, such as puffy eyes. “The endocrinologist will monitor the patient’s hormone levels and make sure they have reached a stable thyroid condition,” says Falcon.
5. ENT doctor and eye plastic surgeon for emergency treatment
A sudden flare of severe thyroid disease can lead to vision loss. This is because the enlarged fat and muscle tissue surrounding the eyes can push the eyeball forward and even put pressure on the optic nerve, which connects the eyeball to the brain.
“When patients become very seriously ill and effectively lose their sight, you don’t have time to waste,” says Falcon. In this case, your eye plastic surgeon might work with an otolaryngologist (ear, nose, and throat doctor) to perform decompression surgery, she says.
“The goal of the surgery is to remove some of the bony structures behind and around the eye, and to create space to release the pressure around the optic nerve,” says Falcon. Later, the surgeon may correct any eyelid sagging caused by dilation due to exophthalmos.
6. A smoking cessation expert to help you quit smoking, if necessary
“Cigarette smoking is one of the biggest risk factors for disease development and progression,” Kossler says. If you have been diagnosed with Graves’ disease or thyroid eye disease, immediately create a plan for how to quit smoking. The best place to start is the Centers for Disease Control and Prevention’s toll-free phone-in, non-judgmental coaching line. The hospital or medical center that treats your eye disease may also be able to recommend a smoking cessation program.
7. A mental health professional to help you address changes related to the disease
If thyroid eye disease results in exophthalmos or “thyroid staring,” in which the exophthalmos keeps the eyelids open so that you appear to be squinting, the changes to your appearance may be difficult to process emotionally.
Depression is common in people with thyroid conditions, according to NORD. A study published in March 2021 in the journal Ophthalmology It is concluded that the disease has a significant impact on the quality of life. Your doctor can refer you to a psychologist or therapist for in-person or telehealth services to help you process the complex feelings that can arise.
As far as you are concerned about your prognosis, keep in mind that there are ways to treat thyroid eye disease. “I want patients to feel reassured that there are good treatment options out there that make them look and feel better [more] As they did before,” Kossler says. “Help is on the way.”
