Thyroid Eye Disease (Graves’ Eye Disease)

Thyroid eye disease (TED) is an inflammatory disorder that affects the tissues around your eyes, causing swelling, discomfort and other symptoms. It happens in some people who have autoimmune diseases that attack their thyroid gland. Most often, it happens in people who have Graves’ disease. In this case, your healthcare provider may call it Graves’ eye disease.

Although autoimmune diseases are lifelong, TED has distinct phases. It may be active for two years or more before the inflammation subsides. During this time, symptoms may come and go and may be mild to severe. TED is mild for most people. But when it’s severe, it can cause permanent damage, with lasting cosmetic and vision changes.

Ophthalmopathy and orbitopathy are two other terms for eye disease. Your healthcare provider may describe TED as:

• Thyroid ophthalmopathy
• Thyroid orbitopathy
• Graves’ ophthalmopathy
• Graves’ orbitopathy

Thyroid eye disease symptoms

Typical thyroid ophthalmopathy symptoms include:

• Bulging eyes (proptosis)
• Eye irritation
• Swollen and inflamed eyelids (blepharitis)
• Dry eyes or teary eyes
• Frequent blinking
• Light sensitivity (photophobia)
• Eye pain and headaches
• Difficulty moving your eyes
• Double vision (diplopia)

Symptoms normally affect both eyes, but sometimes, you may only notice symptoms in one eye.

Complications of Graves’ eye disease

Appearance and vision changes that occur with thyroid eye disease may improve after the active phase is over, but they don’t always. Scarring can prevent the tissues around your eyes from healing and returning to their normal shape. Sometimes, parts of your eyes that affect your vision are permanently damaged. Surgery can treat some of these effects.

Lasting appearance changes may include:

• Eyelid retraction
• Protruding eyes
• Baggy eyes
• Red eyes

Lasting vision changes may include:

• Blurry vision
• Double vision
• Severe vision loss

Causes of thyroid eye disease

Thyroid eye disease is an autoimmune disease. This means your immune system attacks your thyroid and eye tissues. Graves’ disease is a common cause, but other autoimmune thyroid diseases, like Hashimoto’s disease, can also cause it. Even people with normal thyroid function can develop TED.

In these diseases, your immune system creates antibodies that mimic thyroid hormones and attach to thyroid hormone receptors. These receptors are mostly within your thyroid itself, but some are in the tissues behind your eyes. So, the same antibodies that affect your thyroid can also affect your eyes.

Thyroid eye disease risk factors

You may be more likely to get thyroid eye disease (Graves’ eye disease) if you:

• Are female. Females are five times more likely to get Graves’ disease and Graves’ eye disease. (But when males get it, it’s more likely to be severe.)
• Have high or low thyroid hormone levels. Abnormal thyroid hormone levels can contribute to TED. These hormones stimulate the same receptors in your eye tissues that the antibodies do.
• Have had radioiodine therapy. RAI therapy is a standard treatment for overactive thyroid (hyperthyroidism), which Graves’ disease causes. But it may contribute to TED or make it worse.
• Smoke. Smoking and secondhand smoke exposure significantly raise your risk of thyroid eye disease. Smoke exposure also makes you more likely to have more severe symptoms that last longer. If you have TED, the best thing you can do for your disease is quit smoking.

What tests will be done to diagnose thyroid eye disease?

A healthcare provider will be able to diagnose thyroid eye disease by doing a physical eye exam. They’ll be able to examine both your eyelids and your eyes.

If your healthcare provider thinks that you have thyroid eye disease, they’ll order blood tests to check if your thyroid hormone levels and antibodies are too high or too low.

Other tests your provider may request include:

• Ultrasound of the eyes
• Computed tomography (CT)
• Magnetic resonance imaging (MRI)

What is the treatment for thyroid eye disease?

The treatment you’ll need will depend on what stage the disease is in and how severe it is. Supportive treatments can help ease your symptoms while thyroid eye disease is active. These might include home remedies, over-the-counter or prescription medications. After the active phase has ended, you might need or want cosmetic surgery or vision correction surgery.

Supportive treatments for thyroid eye disease may include:

• Eye drops. During the active phase of TED, eye drops can help relieve your symptoms. Different types of eye drops can help with different symptoms, like dryness, redness or pain.
• Selenium supplements. Selenium deficiency increases TED symptoms.
• Scleral lenses. Similar to contact lenses, these lenses cover more of the surface of your eye, offering protection from the elements. You can also use them to apply medication.
• Vision aids. If you have double vision, your eye care provider may suggest wearing an eye patch or special eyeglasses with prisms to help correct it while thyroid eye disease is active.
• Thionamides. If you have hyperthyroidism (Graves’ eye disease), you may need medications to reduce your thyroid hormone levels. Examples include methimazole and propylthiouracil.
• Corticosteroids. When TED symptoms are more severe, healthcare providers prescribe a short course of corticosteroids to bring the inflammation down. You may take them by mouth or IV (intravenously, through a vein).
• Teprotumumab (Tepezza®). This newer drug became the first medication specifically approved to treat thyroid eye disease in the U.S. in 2020. It’s an alternative anti-inflammatory drug within the biologics category. More drugs like it are in development.
• Radiation therapy. Your eye doctor may recommend that you see a radiation oncologist to consider radiation, which reduces inflammation by killing the immune cells that are active behind your eyes.

Your healthcare team can offer alternative treatments if these don’t work for you. Rarely, some people may need surgery during the active phase of Graves’ eye disease. But in most cases, you and your team will consider surgery after your condition has stabilized. At this point, it’ll be easier to tell which appearance and vision changes are likely to be permanent.

Surgery for Graves’ eye disease

Surgery for thyroid eye disease may include:

• Orbital decompression surgery. This eye surgery may be necessary in the rare event that inflammation compresses your optic nerve. A surgeon will remove bone to reduce the compression. This surgery may also be done to reduce eye bulging after your condition has stabilized.
• Thyroidectomy. This treats severe hyperthyroidism. If your healthcare team can’t control your thyroid hormone levels with medications, they might need to remove your thyroid gland.
• Eyelid surgery. If your eyelids have retracted, you might need eyelid surgery to reposition them. This can improve your comfort as well as appearance and protect your eyes from exposure.
• Eye muscle surgery. You might need surgery on your eye muscles if they’re scarred and restricting your eye movement, or you have double vision because your eyes are misaligned.
• Oculoplastic surgery. Oculoplastic surgery adjusts the soft tissues and/or bones around your eyes. It can address cosmetic concerns like bulging eyes and bags around your eyes.
• Corneal transplant. If your cornea was badly damaged by exposure during the active phase of Graves’ eye disease, you might consider replacing it with a transplant to improve your vision.

What is the outlook for thyroid eye disease?

The outlook is good for most people with thyroid eye disease. Most have mild symptoms, which often resolve on their own. People over the age of 50 tend to have more severe symptoms. If you have a serious case of TED, you might need a combination of treatments to manage it. Some people have lasting changes to their eyes, which may require surgery.

When should I call my healthcare provider?

When you have thyroid eye disease, it’s important to let your healthcare team know if your symptoms worsen. You should also let them know if you notice any changes in your vision. Some changes might need urgent treatment. Call right away if you notice:

• Your field of vision has narrowed or closed off
• Colors appear differently than they used to
• Sudden, severe eye pain