Thyroid Eye Disease FAQs

Frequently Asked Questions (FAQs) about Thyroid Eye Disease

Questions about Thyroid Eye Disease? Talk to a Nurse Advocate. Call 1-833-483-7399, Monday through Friday, 8AM to 8PM ET

Nurse Advocates do not provide individual patient care or medical advice. After speaking with a Nurse Advocate, be sure to talk with your doctor about your treatment options, including TEPEZZA. You should talk to your doctor to see if TEPEZZA is right for you.

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Thyroid Eye Disease (TED) is an autoimmune condition that occurs when your body’s immune system attacks the tissue behind your eyes by mistake. This causes the eyelids and areas around and behind your eyes to become red, swollen, and painful. Watch this video to learn more.

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, blurry vision, eye pain, double vision, and more. Learn how TEPEZZA can treat multiple TED symptoms.

While no one knows exactly why some people develop TED and others don’t, there are certain risk factors that may make you more likely to develop TED.

Thyroid Eye Disease (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 healthy parts 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. TEPEZZA is the first and only FDA-approved treatment for TED. Plus, Graves’ disease and TED are usually treated by different doctors. Ophthalmologists who have advanced training usually treat TED, and endocrinologists usually treat Graves’ disease.

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

Normally, your immune system can tell the difference between healthy cells and foreign cells, like bacteria. An autoimmune disease is a condition where your immune system mistakenly attacks healthy parts of the body. Autoimmune diseases are chronic, or lifelong, conditions. There are more than 80 different autoimmune diseases.

With Thyroid Eye Disease (TED), the immune system attacks the muscle and fat tissue behind your eyes. This causes inflammation (redness and swelling) and scar tissue to form. This leads to symptoms such as bulging eyes and changes in vision.

While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat Thyroid Eye Disease (TED). It is the first medicine that targets TED at the source, not just the symptoms. Watch a video to see how TEPEZZA treats TED.

There are 4 basic types of surgery for Thyroid Eye Disease.* These surgeries are often done in a certain order:

  • Orbital decompression surgery: helps reduce bulging eyes
  • Strabismus surgery: helps correct eyes that aren’t properly aligned or point in different directions, also called strabismus (struh-biz-muhs) and double vision, also called diplopia (dih-ploh-pee-uh)
  • Eyelid surgery: helps repair eyelid changes, like pulled-back eyelids (also called eyelid retraction)
  • Facial surgery: helps address other changes to the eyes and face caused by TED

*Not everyone will need all 4 types of surgery.

Multiple surgeries may be needed to help repair the damage cause by TED.

TEPEZZA is a nonsurgical treatment that treats TED at the source, not just the symptoms.

See how it works

TED is an ongoing autoimmune condition, so it is possible for new symptoms to appear. If you have not had any changes in your symptoms for quite some time, and then suddenly start to see them come back, or get worse, this is called a “flare.” Flares are a part of how autoimmune diseases affect the body.

Some potential events that may trigger a flare in TED are:

  • Changes in thyroid levels
  • Pregnancy
  • Stress
  • Eye surgeries such as cataract removal, strabismus repair, decompression, and lid surgery

Since there may be other unknown causes of a TED flare, it is important to speak with your TED Eye Specialist about any concerns you may have about changing medicines or starting a new medicine, getting pregnant, taking a vaccine, or having any surgery. This is important to do before, during, or after your treatment for TED.

Approximately 15% of TED patients may have flares, regardless of how their TED was treated. Sometimes these flares are years after early symptoms stopped or lessened.

Smoking: People who smoke are up to 8 times more likely to develop Thyroid Eye Disease (TED). Smoking can also make TED worse and treatment may not work as well.

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

Age: TED occurs more often in people who are 40 years or older.

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 an increased risk for developing one too. Having a thyroid condition puts you at higher risk of developing TED.

Learn about the symptoms of Thyroid Eye Disease.

Thyroid Eye Disease (TED) can cause swelling behind the eye, which can make the eyes bulge. With 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).

Watch this video to learn why eyes bulge and how TEPEZZA can help.

Dietary supplements or vitamins are not recognized by the FDA to treat any disease. Talk to your doctor if you have additional questions.

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

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. See before and after photos of how TEPEZZA treats eye bulging.

During acute TED, tear ducts may become inflamed (red and swollen), which can also cause dryness. Learn more about Thyroid Eye Disease symptoms.

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. Images can appear side-by-side, one on top of the other, or a mix. Watch these videos to see what double vision can look like.

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

Double vision represented by two eyes merged on top of each other Double vision represented by two eyes merged on top of each other Double vision represented by 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.

See how TEPEZZA helps double vision.

Thyroid Eye Disease (TED) can cause muscles and fat behind the eye to become swollen. Inflammation and damage to the muscles can cause the eyes to point in different directions and make them hard to move. Your doctor may refer to this as strabismus (struh-biz-muhs).

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 1 object is seen as double.

See how TEPEZZA helps double vision.

 

While not all people with Thyroid Eye Disease (TED) will get double vision, those who do may have different types. Some people have double vision all the time (constant). Other people may have double vision that comes and goes. "Temporary" and "situational" double vision can come and go, and are caused by TED. Watch the videos below to see how these different types of double vision may appear.

Temporary

When waking up in the morning or when tired

Situational

When looking to the left or right, or toward the corners of the eyes

Constant

Always noticeable

Learn about the other symptoms of Thyroid Eye Disease

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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.

TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.

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, dry skin, weight loss, nail problems, and changes in menstruation.

This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.

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

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.

P-TEP-US-00841-3 07/23

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.

TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.

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, dry skin, weight loss, nail problems, and changes in menstruation.

This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.

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

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.

P-TEP-US-00841-3 07/23