Thyroid Eye Disease FAQs

Frequently asked questions (FAQs) about Thyroid Eye Disease

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When you have TED, your body's immune system attacks the tissue around and behind your eyes. This causes the eyelids and areas around and behind your eyes to become red, swollen, and painful.

The swelling can also cause your eyes to push forward, or bulge, and prevent your eyelids from closing completely. You may also have other symptoms such as dry/gritty eyes, watery eyes, blurred vision, and sensitivity to light.

Learn how TEPEZZA can relieve multiple TED symptoms

TED and Graves’ disease are both autoimmune diseases. Normally, the immune system can tell the difference between your cells and foreign cells, like bacteria. But with an autoimmune disease, the immune system attacks part of your body by mistake.

With Graves’ disease, the immune system attacks the thyroid. In TED, the immune system attacks the muscle and fat tissue behind the eyes.

Because Graves’ disease and TED attack different parts of the body, they need different treatments. Treatment for Graves’ disease won’t work for TED.

Get your questions about TED answered today by calling a Nurse Advocate.
Call 1-833-483-7399 Monday-Friday, 8AM-8PM ET

While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat TED. It is the first medicine that treats the cause of TED and not just the symptoms.

See how TEPEZZA works

TED is a progressive disease, which means it gets worse over time. When you first develop TED, it is progressing (or “active”). During this time, symptoms like eye bulging, pain, redness, and swelling appear and can change or continue to get worse. The progressing (or “active”) phase of TED can last for as little as 6 months or up to 3 years.

Over time, the progressing (or “active”) phase of TED changes, and scar tissue forms. During this non-progressing (or “inactive”) phase, symptoms such as redness and swelling may get better. Even though symptoms may improve, there could be permanent damage to the eyes. This is why it is important to get treatment for TED as early as possible, before damage becomes permanent.

Find a TED Specialist in your area to discuss treating your TED today

Smoking: People who smoke are 8 times more likely to develop TED. Smoking can also make TED worse.

Gender: Women are 5 times more likely than men to develop TED.

Age: TED occurs most often when people are in their 40s or in their 60s.

Radioactive iodine: This is a medicine used to treat Graves’ disease. It can increase the chances of getting TED and can make TED worse.

Thyroid problems: Graves’ disease and other thyroid conditions, such as Hashimoto’s disease and hyperthyroidism, are known risk factors for TED.

Family history: Thyroid conditions often run in families. If a family member develops a condition that affects his or her thyroid, you may be at increased risk for developing one too.

Get a complete list of Thyroid Eye Disease symptoms here

During progressing (or “active”) Thyroid Eye Disease, muscle and fat tissue behind the eye become inflamed (red and swollen).

This swelling pushes on the back of the eye, causing it to bulge forward.

Your doctor may also call this proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal-muhs).

Learn how TEPEZZA can provide relief from eye bulging

There are a few ways Thyroid Eye Disease (TED) can cause dry eye.

During progressing (or “active”) TED, the muscles in the eyelids can tighten, causing the upper and lower lids to pull back. As a result, it may be harder to close the eyes, leaving them more likely to feel dry or irritated. Eye bulging can also prevent eyelids from closing completely. This leaves the clear, protective layer over the front of the eye exposed.

During progressing (or "active") TED, tear ducts may also become inflamed (red and swollen), which can also cause dryness.

Learn more about Thyroid Eye Disease symptoms

Dry eye, which may be noticed during progressing (or "active") Thyroid Eye Disease (TED), can make the eyes feel "gritty" and "sandy." With dry eye, it can also feel like there is something stuck in the eye.

Learn more about Thyroid Eye Disease symptoms

Double vision, also known as diplopia (dih-ploh-pee-uh), is when you see 2 images of an object instead of 1.

In clinical studies, 7 out of 10 people taking TEPEZZA saw improvements in double vision. Learn more

Double vision icon of two eyes merged together side by side Double vision icon of two eyes merged together side by side Double vision icon of two eyes merged together side by sideThe 2 images can appear side-by-side.

Double vision icon of two eyes merged on top of each other Double vision icon of two eyes merged on top of each other Double vision icon of two eyes merged on top of each otherThey can also appear on top of one another.

Double vision icon of four eyes merged together Double vision icon of four eyes merged together Double vision icon of four eyes merged togetherOr a combination of both.

When Thyroid Eye Disease (TED) is progressing (or “active”), muscles and fat behind the eye become swollen. Inflammation and damage to the muscles can cause the eyes to point in different directions and make them hard to move.

Since the eyes may be pointing in different directions, it is harder for them to focus on a single object at the same time. So instead of seeing 1 object, 2 objects are seen.

Your doctor may refer to this as strabismus (struh-biz-muhs).

In clinical studies, 7 out of 10 people taking TEPEZZA saw improvements in double vision. Learn more

While not all people with Thyroid Eye Disease (TED) will get double vision, those who do may have different types. While some people have constant double vision, other people may have double vision problems from TED that come and go. "Temporary" and "Situational" double vision are both caused by TED and can come and go. Watch the videos below to see how these different types of double vision may appear.

Temporary

Such as when waking up in the morning or when tired

Situational

Such as when looking to the left or right, or toward the corners of the eyes

Constant

Always noticeable

Select Important Safety Information

If you have inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.

Please see Full Important Safety Information below.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about TEPEZZA?

Infusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.

Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA:
  • High blood pressure
  • Fast heartbeat
  • Redness of the face/Feeling hot
  • Difficulty breathing
  • Headache
  • Muscle pain

If you have inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.

TEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.

Before receiving TEPEZZA, tell your doctor if you:
  • Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
  • Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
  • Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
    • Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
  • Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
  • Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.
What are the possible side effects of TEPEZZA?

The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, and dry skin.

This is not a complete list of all possible side effects. Tell your doctor or treatment team if you have any side effect that bothers you or that does not go away.

Please visit TEPEZZA.com for more information.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit www.fda.gov/safety/medwatch, or call the FDA at 1-800-FDA-1088.

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.

USE and IMPORTANT SAFETY INFORMATION

What is the most important information I should know about TEPEZZA?

Infusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.

Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA:
  • High blood pressure
  • Fast heartbeat
  • Redness of the face/Feeling hot
  • Difficulty breathing
  • Headache
  • Muscle pain

If you have inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.

TEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.

Before receiving TEPEZZA, tell your doctor if you:
  • Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
  • Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
  • Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
    • Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
  • Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
  • Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.
What are the possible side effects of TEPEZZA?

The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, and dry skin.

This is not a complete list of all possible side effects. Tell your doctor or treatment team if you have any side effect that bothers you or that does not go away.

Please visit TEPEZZA.com for more information.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit www.fda.gov/safety/medwatch, or call the FDA at 1-800-FDA-1088.

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.