Thyroid Eye Disease

What is Thyroid Eye Disease?

Thyroid eye disease (TED) is a rare lifelong, autoimmune condition that affects the eyes and can get worse over time. When you have TED, your body’s immune system mistakenly attacks the tissue behind your eyes, which may cause inflammation and swelling of the muscle and fat behind the eye.

TED is unpredictable and affects everyone differently. Symptoms such as eye bulging, redness and watery eyes can appear at any time and range from mild to severe. If TED is left untreated, scar tissue can build up causing eye damage, and in rare cases, TED can lead to vision loss.

While TED is most commonly seen in people living with Graves’ disease, it’s important to note that they are different diseases that require different treatment. However, you may hear TED referred to as other names such as Graves’ eye disease, Graves’ ophthalmopathy (GO), Graves’ orbitopathy, Graves’ disease eyes, Thyroid-associated orbitopathy (TAO) or Thyroid ophthalmopathy. Learn more about TED vs. Graves’ disease.

Symptoms

Inflammation from TED can cause a number of different eye symptoms like:

• Redness
• Eye Bulging
• Double Vision
• Dry, gritty eyes
• Light Sensitivity
• Eye Pain
• Eyelid swelling
• Watery Eyes

There are three simple ways to keep track of your thyroid eye disease symptoms to help discussions with your doctors. Find tools and tips to track your symptoms.

Diagnosis

Thyroid eye disease is a rare eye condition that should be diagnosed by a TED specialist which can include a neuro-ophthalmologist, cornea specialist, strabismus specialist or retina/vitreous specialist. You can find a TED Specialist in your area with this search tool.

Living with TED

The impact of thyroid eye disease (TED) goes well beyond the eyes. It can also impact daily activities. While these changes may not always be visible, they shouldn’t be overlooked. Along with learning how to speak up for yourself with your doctor, there are small adjustments you can make—in and out of the house—that can help manage your condition and help you live the life you want. Find our more tips for managing vision changes.

Management and Treatment

How is thyroid eye disease treated?

Your provider will begin by treating you for thyroid disease if you have it. Treating thyroid diseases doesn’t treat thyroid eye disease, so your provider may suggest one or more of these therapies:

Prescription medications to treat TED

Your provider may prescribe anti-inflammatory drugs like prednisone and other systemic steroids and/or rituximab. Discuss the side effects of these treatments with your provider. There’s also a medicine specifically approved and available for thyroid eye disease called teprotumumab (Tepezza®).

Over-the-counter medications to treat TED

Eye drops to relieve dryness and irritation are generally non-prescription. You can buy them over the counter. You should use the drops that lubricate but avoid those that take away redness.

Your provider may also suggest selenium supplements if your blood levels of this mineral are low.

A few studies have shown that drinking aloe vera juice reduced inflammation levels in some cases.

Clinical trials evaluating potential medications to treat TED

There are a number of ongoing clinical trials evaluating the safety and efficacy of a range of drug candidates delivered via intravenous infusion, subcutaneous injection, and oral administration. For more information, visit clinicaltrials.gov or the TED Community Organization’s list of clinical trials.

Lifestyle changes and home remedies to treat TED

The most important lifestyle change you can make is to quit smoking if you smoke. It raises your risk of developing TED by seven to eight times and makes TED’s active (inflammatory) disease phase longer. In addition, smoking decreases the effectiveness of treatment for thyroid eye disease. Other things you can do to be more comfortable include:

• Using cool compresses on your eyes.
• Wearing sunglasses.
• Keeping your head higher than your body when you lie down.
• Taking selenium supplements (after approval from your provider). Studies indicate that these may help people with mild active thyroid eye disease.
• Taping your eyelids shut when you sleep. Being unable to close your eyes can lead to dryness and a corneal ulcer, which can cause scars on your eyes and loss of vision.
• Wearing glasses with prisms to reduce double vision.
• Using a patch on one eye to reduce double vision.
• Keep your thyroid hormones level by following your health care provider’s suggestions and getting regular thyroid tests.

Surgery to treat TED

• Eyelid surgery:Tight eyelids keep your top eyelid from coming down and your bottom lid from coming up. This can lead to corneal damage. Eyelid surgery may make it easier to keep your cornea covered.
• Eye muscle surgery:Your provider may recommend surgery to move your eye muscles and help to correct double vision. You may need more than one surgery.
• Orbital decompression surgery: This surgery relieves the pressure on the optic nerve by making the eye socket larger or taking away excess tissue. The surgery lessens the bulging of the eye. If you provider recommends other surgeries (eyelid, eye muscle), orbital decompression is usually done first.

Available Resources

For more information regarding thyroid eye disease and resources available, please visit one of the following partners:

TED Community Organization is comprised of patients, caregivers, medical professionals, and individuals who advocate for those dealing with Thyroid Eye Disease (TED). In essence, we are a community of individuals who have the shared living experience of TED. We offer emotional support as well as practical ideas for living with and finding solutions for TED.