Thyroid Eye Disease Phases

Eye during acute phase

• 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 some cases, the swelling can even threaten the ability to see
• Over time, scarring (also known as fibrosis [fahy-broh-sis]) can take place, and cause further damage even after the acute phase is over

• What’s happening in front of the eye?
• Symptoms may appear suddenly and get worse quickly. These 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). Learn more about TED symptoms

• How long does the acute phase last?
• 6 months to about 2 years
• For some people, the acute phase can be shorter or longer

• Who is it treated by?
• Ophthalmologists are the primary eye specialists, some of whom 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 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 Eye Specialist

• What are the treatment options?
• While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat TED. See results

Learn about further eye damage that can occur in the chronic phase

Eye during chronic phase

• What’s happening behind the eye?
• Scar tissue that began forming during the acute phase continues to cause damage to the eyes

• Can symptoms still be present during the chronic phase?
• If left untreated, the scar tissue behind the eye can cause symptoms such as bulging eyes (proptosis [prop-toe-sis]), double vision (diplopia [dih-ploh-pee-uh]), eyelid retraction, eye pain, and pressure
• Some symptoms, such as redness or swelling, may improve

Remember, TED is an ongoing disease. Just because some symptoms slow down, it does not mean they will go away. It’s even possible for symptoms to return, or “flare up.” If you have symptoms that come back at least 6 months after your TED has been in the chronic phase, it is considered a “flare up.” Approximately 15% of TED patients may have flares. Sometimes these flares are years after early symptoms stopped or lessened.

• Who is it treated by?
• Ophthalmologists with special surgical training
• These specially trained surgeons are usually 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 Eye Specialist near you.

• What are the treatment options?
• While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA approved to treat TED. See results
  • 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 TED in its acute phase, including eye bulging, double vision, eye pain, redness, and swelling. No one in the clinical studies had eye surgery.
• While doctors recommend getting treatment as early as possible in the acute phase, treatment could still help if you are in the chronic phase
• 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) and double vision, also called diplopia (dih-ploh-pee-uh)
  3. Eyelid surgery: helps repair eyelid changes, like pulled-back eyelids (also called eyelid retraction)
  4. Facial surgery: helps address other changes to the eyes and face caused by TED