Thyroid Eye Disease: Health Professionals for Your Care

When you have thyroid eye disease, you want to have the right health professionals on your care team for both your eyes and your overall health. Here is an overview of thyroid eye disease and the healthcare providers who can help you best manage it.

Thyroid Eye Disease Basics

The thyroid is a butterfly-shaped gland in your neck that helps your body make hormones to control your metabolism. When your thyroid is overactive, it can cause Graves’ disease.

About half of all people with Graves’ disease develop thyroid eye disease (also called Graves’ eye disease or Graves’ ophthalmopathy). However, thyroid eye disease can also develop in those without Graves’ disease and those with an underactive thyroid.

Thyroid eye disease is considered an autoimmune condition. This means that the immune system attacks the muscles and other tissues near the eyes and causes inflammation in that area.

Symptoms of thyroid eye disease include:

• Eyelid redness
• Eyelid swelling
• Upper eyelid retraction (elevation)
• Eyeball protrusion
• Pain with eye movement
• Spontaneous pain behind the eyeball
• Tearing
• Burning, stinging, sandy, gritty eye pain

Thyroid eye disease is more common in people between the ages 40 to 49 and 60 to 69, but it can develop at any age. It is more common in women than men, although healthcare providers often see more severe symptoms in men. Overall, thyroid eye disease is relatively rare, occurring in about 19 of every 100,000 people.

A new type of medical treatment for thyroid eye disease, called Tepezza (teprotumumab), was approved in 2020. However, it was briefly back-ordered due to the Defense Production Act for COVID-19, whereby labs have been taken over to manufacture vaccinations. But as of March 30, 2021, Horizon announced that Tepezza supply will resume beginning in April.

Other treatments that may help include corticosteroids or radiation therapy. Eye doctors also may perform surgery for certain signs and symptoms of thyroid eye disease.

Working with the right health professionals can help you receive the best care possible for thyroid eye disease. Here is who to include on your care team.

Primary Care Doctor

A primary care doctor is the provider who can help coordinate your overall care. This professional can refer you to specialists (such as an ophthalmologist) who can provide more detailed exams and treatments and make sure you are on track with any needed health checks for your body as a whole.

Primary care doctors can take a big-picture look at what medications you are using and make sure you are safely using them.

Ophthalmologist

An ophthalmologist is a physician who specializes in the medical and surgical care of the eyes. They will determine the severity of your thyroid eye disease.

They will check your vision, eye pressure, color vision, and dilated eye exam. Checking the nerve fiber layer maps with optical coherence tomography (OCT) and the Humphrey visual field test (HVF) can also be helpful.

Mild thyroid eye disease is generally treated with lubricating eye drops. With moderate-to-severe clinical activity of thyroid eye, an ophthalmologist may recommend steroids (topical, oral, or IV), radiotherapy to the eye sockets, or Tepezza.

You will likely have regular appointments with an ophthalmologist to check how your thyroid eye disease has progressed.

Endocrinologist

An endocrinologist is a doctor who specializes in managing hormones. They can help manage your thyroid hormones, although this may not necessarily help your eye-related thyroid eye disease symptoms.

Thyroid Eye Disease Specialist

For more advanced thyroid eye disease, you may see a thyroid eye disease specialist who can help monitor your eye disease and choose the best treatments for you.

Ophthalmic Reconstructive Surgeon

If you require surgery to reduce swelling or better control the muscles around the eye, you may also work with an orbital/ophthalmic reconstructive surgeon.

Ear, Nose, and Throat Surgeon

If you require surgery, the ophthalmic reconstructive surgeon may collaborate with an ear, nose, and throat surgeon (also called an otolaryngologist or ENT), depending on the type of surgery performed.

Psychologist or Therapist

Because thyroid eye disease can change the way you look and feel, it’s normal to feel depressed or anxious about these ongoing changes. A psychologist, therapist, or another mental health professional can help you work through your feelings.

A Word From Verywell

Thyroid eye disease can be challenging, but there are treatment options available. Work with a trusted healthcare team, show up for scheduled health appointments, and follow any lifestyle tips to make it a little easier to manage your thyroid eye disease.