Patient Education

Thyroid Eye Disease

What is thyroid eye disease (TED)?

 TED can cause swelling around your eyes that can sometimes change the way your eyes look or the way they function. For many people this is mild. If it becomes severe, though, it can affect your vision.

TED can develop when your body’s immune system attacks the tissues around your eyes.

Over time, the inflammation may lessen or clear. Sometimes the symptoms like eye bulging, pain, and double vision can persist.

At Stanford Health Care, our eye specialist will check whether you have TED. Your care includes an eye exam, eye photography, and tests. 

Treatment choices

 Medicine

Teprotumumab (Tepezza)

This medicine is the only drug approved by U.S. officials for treating TED.

The drug improves inflammation around your eye, eye bulging, and double vision.

Overall, it improves the quality of life in most patients with active TED. This medicine is given as a liquid (infused) into your bloodstream.

The treatment is given every 3 weeks, typically for 8 doses, over 24 weeks. Not all patients respond to this medicine, and patient responses vary widely.

Your doctors will decide if this treatment might be able to help you. It is important that you follow with your doctor closely  during treatment and report any side effects or changes in your health during treatment.

Side Effects

Side effects are common with this medicine. Most side effects are mild to moderate and improve over time.

Other side effects include brittle nails, weight loss, anxiety or depression, and loss of menstrual periods.

A serious side effect, due to the drug, may happen in about 4 of every 100 patients. Some of these more severe side effects may be permanent and include the following:

  • Urinary tract infections 
  • Urinary incontinence (trouble controlling your pee)
  • Bloody or persistent diarrhea leading to the development of inflammatory bowel disease
  • An abnormal tunnel (fistula) extending from your bowel or bladder, requiring surgery 
  • Hearing loss or altered hearing
  • A need for new diabetes medicine, or an increase or change to your diabetes medicine
  • Other effects that we do not yet know

The risk can be higher if you have had inflammatory bowel disease. Risk is also higher if you’ve had uncontrolled diabetes or hearing loss.

If you have diabetes or prediabetes, you will need to check your sugar levels regularly, and at least every 3 weeks. You should follow closely with your health care team to keep your sugars controlled.

Side Effects from Clinical Trials
Muscle Spasms

25%
Nausea 17%
Hair loss 13%
Diarrhea 12%
Fatigue (feeling tired) 12%
Rise in blood sugar 10%
Hearing changes 10%
Change in taste 8%
Headache 8%
Dry Skin 8%
Rash 6%

Children and anyone pregnant or breastfeeding should not take this drug. If it’s possible you could get pregnant, you need to take effective birth control during treatment and at least 6 months after treatment. You should also take a pregnancy test before you get each medicine infusion. You need to avoid pregnancy for at least 6 months after your last infusion.

Call your doctor right away if you have any of the following symptoms:

  • Blood in your poop
  • Sudden change in vision
  • Hearing loss
  • Elevated blood sugar not controlled with medicine
  • Any severe or concerning side effect

For urgent matters, you can call:

  • During clinic hours 8:00 am to 6:00 pm, Monday to Friday: (650) 497-7724
  • After hours: Stanford operator (for emergencies ask for the on-call eye doctor), (650) 723-6661

For non-urgent questions or concerns, you can send us a MyHealth message.

Other medicines

Steroids and tocilizumab

These treatments aim to lower inflammation around your eye. Their benefits and side effects vary.

Your doctor may recommend these medicines depending on your disease and your health risks.

Radiation

Sometimes your doctor will recommend that you get radiation therapy. The radiation goes to the area around your eye.

Radiation can cause dry eye symptoms and may cause the lens inside your eye to get cloudy, which could blur vision. This typically occurs at higher doses, and should be monitored by your eye doctor.

Radiation can improve swelling in the muscles and tissues around your eye.

Surgery

Several kinds of surgery are used to treat TED.

If needed, surgery is usually done when your disease is stable for 6 months. Rarely, surgery is done urgently to treat vision loss.

Your doctor will evaluate you to determine if surgery is indicated to help the appearance or function of your eyes. There are a variety of risks and benefits to surgery. If your doctor recommends surgery, your team will discuss the risks and benefits at that time.

Types of surgery include:

  • Eye socket surgery to treat a bulging eye
  • Surgery to treat double vision
  • Eyelid surgery to improve eyelid appearance or function

Current as of 11/2022
Stanford Medicine | Health Care Patient Experience/Health Education, Engagement, and Promotion