Please ensure JavaScript is enabled for purposes of website accessibility What is Thyroid Eye Disease (TED)? | TEPEZZA® (teprotumumab-trbw)
Approved Use: TEPEZZA is for adults with Thyroid Eye Disease (TED), no matter if they've had TED for months or years.

What Is Thyroid Eye Disease (TED)?

Understanding TED is the first step to getting the right care. Learn how TED affects the eye, how it's diagnosed, who treats it, risk factors, and how it differs from Graves' disease.

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TED is an ongoing autoimmune condition that affects the eyes and can get worse over time.

TED is an autoimmune condition in which your body’s immune system mistakenly attacks the tissue behind your eyes, causing inflammation and swelling of the muscles and fat tissue.

TED can lead to symptoms like:

  • Red, dry, itchy, or watery eyes
  • Eyelid changes
  • Pressure or pain behind the eyes
  • Bulging eyes
  • Double vision

TED looks different for everyone:

  • Symptoms can appear at any time
  • Symptoms can range from mild to severe
  • New or previously experienced symptoms may temporarily come back or get worse, which is called a flare
  • About 1 out of 6 people with TED experience flares, regardless of how their TED is treated
  • Flares can occur years after early symptoms stopped or lessened

What’s happening to the eye in TED?

  • Healthy eye

    What's happening behind the eye?

    • There is no inflammation (swelling) behind the eye
    • The muscle and fat tissue do not press against the eye or on the optic nerve, allowing for normal vision

    What’s happening in front of the eye?

    • The eyeball and eyelid both appear normal (no redness/swelling)
  • Inflammatory signs/symptoms

    Eye during periods of inflammation

    What's happening behind the eye?

    • Muscle and fat tissue become inflamed and swell
    • The swelling makes the eye bulge forward
    • The swelling can cause double vision and misaligned eyes (eyes that don’t work together), which can make it harder to track words on a page, and can cause problems with depth perception and balance
    • In rare, extreme cases, the swelling can even threaten the ability to see

    What’s happening in front of the eye?

    • Symptoms may appear suddenly and get worse quickly
    • Symptoms can include redness, pain, itchy eyes, watery eyes, pressure, eyelid retraction (eyelids that are pulled back), swollen eyes, misaligned eyes (eyes that don’t work together), vision changes, and/or bulging eyes
    • Your doctor may refer to this bulging as proptosis (prop-toe-sis)
  • Long-term impact

    Eye with long-term changes

    What's happening behind the eye?

    • Ongoing inflammation can lead to lasting changes in the muscle and fat tissue behind the eye
    • These tissue changes can contribute to symptoms such as bulging eyes (proptosis [prop-toe-sis]), double vision (diplopia [dih-ploh-pee-uh]), and pressure behind the eyes
    • These tissue changes can continue impacting vision and can impact how patients feel about themselves
    • Some symptoms, such as redness or swelling, may improve
  • Healthy eye
  • Inflammatory signs/symptoms
  • Long-term impact

What's happening behind the eye?

  • There is no inflammation (swelling) behind the eye
  • The muscle and fat tissue do not press against the eye or on the optic nerve, allowing for normal vision

What’s happening in front of the eye?

  • The eyeball and eyelid both appear normal (no redness/swelling)

Eye during periods of inflammation

What's happening behind the eye?

  • Muscle and fat tissue become inflamed and swell
  • The swelling makes the eye bulge forward
  • The swelling can cause double vision and misaligned eyes (eyes that don’t work together), which can make it harder to track words on a page, and can cause problems with depth perception and balance
  • In rare, extreme cases, the swelling can even threaten the ability to see

What’s happening in front of the eye?

  • Symptoms may appear suddenly and get worse quickly
  • Symptoms can include redness, pain, itchy eyes, watery eyes, pressure, eyelid retraction (eyelids that are pulled back), swollen eyes, misaligned eyes (eyes that don’t work together), vision changes, and/or bulging eyes
  • Your doctor may refer to this bulging as proptosis (prop-toe-sis)

Eye with long-term changes

What's happening behind the eye?

  • Ongoing inflammation can lead to lasting changes in the muscle and fat tissue behind the eye
  • These tissue changes can contribute to symptoms such as bulging eyes (proptosis [prop-toe-sis]), double vision (diplopia [dih-ploh-pee-uh]), and pressure behind the eyes
  • These tissue changes can continue impacting vision and can impact how patients feel about themselves
  • Some symptoms, such as redness or swelling, may improve
Treatment with TEPEZZA may be able to help symptoms, even if you've had TED for years
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How is TED diagnosed?

The first step is a baseline eye exam. Your doctor will look for signs of TED. They may also order a CT scan or MRI to see what's happening behind the eye.

If your eyes are bulging, your doctor may use a tool called an exophthalmometer to measure how far they stick out.

Your doctor will also ask about your medical history. They may want to know if you have a thyroid condition, if anyone in your family has had thyroid problems, or if you smoke. A blood test can help determine if your thyroid isn't functioning correctly. Thyroid disorders are frequently, though not always, linked to TED.

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Who treats TED?

Not every doctor has experience with TED. A TED Specialist has the training and experience to diagnose TED and provide the care you may need.

  • Oculoplastic surgeon: Oculoplastic surgeons are eye doctors with advanced surgical training. They generally have the most experience treating TED
  • Ophthalmologist: Ophthalmologists are able to diagnose and assess the severity of TED, which is important for beginning treatment.
  • Strabismus surgeon: Strabismus surgeons treat eyes that are misaligned or point in different directions, which can cause double vision
  • Endocrinologist: Endocrinologists treat conditions of the thyroid and other glands. Many people with TED also have a thyroid condition like Graves' disease, so an endocrinologist is often the first doctor to spot signs of TED and start treatment
  • Neuro-ophthalmologist: Neuro-ophthalmologists are eye doctors who focus on how the eyes work with the brain, nerves, and muscles. They often treat double vision and eyelid problems

TED vs Graves’ disease

TED and Graves’ disease are different diseases that need different treatment.

TED and Graves' disease are both autoimmune conditions. Normally, your immune system can tell the difference between your healthy cells and harmful cells, like bacteria or viruses. With an autoimmune condition, your immune system attacks your own healthy tissue by mistake. In Graves' disease, the immune system attacks the thyroid. In TED, it attacks the muscle and fat tissue behind the eyes.

Up to 40% of people diagnosed with Graves’ disease could develop TED

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Treatment for Graves’ disease won’t work for TED, and treatment for TED won’t work for Graves’ disease. This is why it is important to ask your doctor about a treatment for TED, like TEPEZZA

Doctors may use a number of different names for TED. Some of these even contain the word Graves’. If you read or hear any of these terms used, they mean Thyroid Eye Disease:

  • Graves’ orbitopathy
  • Graves’ ophthalmopathy
  • Graves’ eye disease
  • Thyroid-associated ophthalmopathy
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TED risk factors

It's not fully known why some people develop TED and others don't. But doctors have identified certain factors that can put people at greater risk.

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

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

Smoking: People who smoke are up to 8 times more likely to develop TED

Radioactive iodine treatment: Radioactive iodine may be used to treat Graves' disease and other thyroid conditions

Age: TED occurs more often in people who are 50 years or older

Family history: Thyroid conditions often run in families. Having a family history of Graves' disease or similar conditions may increase the risk of having them yourself, and TED is often linked with thyroid dysfunction

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

TEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, even if you don’t have a diagnosis of IBD before starting TEPEZZA treatment. Tell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there’s little or no stool to pass.

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.

Cases of encephalopathy, a condition that affects how the brain works, have been reported in people treated with TEPEZZA. Tell your healthcare provider right away if you, your family member, or caregiver notice any change in your mental status (e.g., confusion, changes in thinking or behavior, memory problems, excessive sleepiness, difficulty speaking, seizures or decreased responsiveness). Your healthcare provider may stop or delay TEPEZZA while they evaluate and treat you as required.

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, ear discomfort, 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 see Full Prescribing Information or 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.

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.