Thyroid Eye Disease Phases

Thyroid Eye Disease needs to be treated early, before permanent damage occurs

Thyroid Eye Disease (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 Thyroid Eye Disease changes, and scar tissue forms. During this non-progressing (or "inactive") phase, some symptoms like 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.

Read on to learn more about the phases of TED.

Find a TED Specialist

Not all doctors are used to treating TED. Make sure you are seeing one who has experience treating it.

Find TED Specialists in your area

Progressing (or “active”) Thyroid Eye Disease

Diagram of the side of the eye showing active Thyroid Eye Disease Diagram of the side of the eye showing active Thyroid Eye Disease

Diagram of the side of the eye showing active Thyroid Eye Disease

  • What happens behind the eye?
    • Muscle and fat tissue become swollen
    • Swelling pushes on the back of the eye, causing it to bulge forward
    • Scarring (known as fibrosis) starts, causing damage to the eye
  • What happens in the front of the eye?

    Symptoms first appear, like:

    • Redness
    • Swelling
    • Bulging eyes—known as proptosis (prop-toe-sis) or exophthalmos (ek-sof-thal-muhs)
    • Pulled-back eyelids, also called eyelid retraction
    Get a complete list of Thyroid Eye Disease symptoms here
  • How long does it last?
    • 6 months up to 3 years

    After this phase, damage may become permanent.

  • Who is it treated by?
    • Ophthalmologists are the primary eye specialists who treat TED
    • Some ophthalmologists have special training and see more TED patients than others. This includes oculoplastic surgeons, who specialize in fixing the physical damage caused by TED. It also includes neuro-ophthalmologists, who specialize in nerves involved in vision problems caused by damage to nerves around the eyes
    • Endocrinologists will manage Graves' disease or other thyroid conditions, but do not usually treat TED directly. They will make sure the medicines used to treat Graves' disease or another thyroid condition do not interact with treatments for TED
    • Not all doctors are used to treating TED. Make sure you’re seeing a doctor with experience treating TED
    Find a TED Specialist
  • What are the treatment options?
    • While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat Thyroid Eye Disease
    • Get treatment for TED as early as possible, before damage becomes permanent. Ask your doctor if TEPEZZA is right for you
    See the difference TEPEZZA can make

Non-progressing (or “inactive”) Thyroid Eye Disease

Diagram of the side of the eye showing inactive Thyroid Eye Disease Diagram of the side of the eye showing inactive Thyroid Eye Disease

Diagram of the side of the eye showing inactive Thyroid Eye Disease

  • What happens behind the eye?
    • Some changes, like swelling, may improve
  • What happens in the front of the eye?
    • Some changes, like redness and swelling, may improve
    • Other changes, like bulging eyes, double vision, or eye squint, may become permanent
  • How long does it last?
    • Damage from scarring may be permanent
  • Who is it treated by?
    • Ophthalmologists with special surgical training
    • These specially trained surgeons are usually called oculoplastic surgeons or strabismus surgeons
    • Oculoplastic surgeons specialize in repairing the damage to the eyes and face caused by TED. This includes reducing bulging eyes and repairing retracted eyelids
    • Strabismus surgeons specialize in repairing eyes that have become misaligned or point in different directions
    Find a TED Specialist
  • What are the treatment options?
    • While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat TED*
    • If permanent damage does occur, surgery, or multiple surgeries, may be needed. Surgery for TED is complex and multiple surgeons may be involved. There are 4 basic types of surgery. These surgeries are often done in a certain order. Not everyone will need all 4:
      1. Orbital decompression surgery: helps reduce bulging eyes
      2. Strabismus surgery: helps correct eyes that aren’t properly aligned or point in different directions, also called strabismus (struh-biz-muhs) or double vision, also called diplopia (dih-ploh-pee-uh)
      3. Eyelid surgery: helps repair eyelid changes, like pulled-back eyelid (also called eyelid retraction)
      4. Facial surgery: helps address other changes to the eyes and face caused by TED

*TEPEZZA was tested in 2 clinical studies with people who have Thyroid Eye Disease. All of the people in the studies had some symptoms of progressing (or "active") TED, such as eye bulging, double vision, eye pain, redness, and swelling.

Surgery can be painful and may not fully correct changes to vision or appearance.

How TEPEZZA May Help

The sooner you get treatment, the better your chances of avoiding permanent damage to your eyes.

See the difference TEPEZZA can make

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.