If you have Graves' disease, here's what you need to know about Thyroid Eye Disease

Posted: November 22, 2021 | Word Count: 607

If you are experiencing symptoms like eye bulging, double vision, dry or watery eyes, severe pain or pressure behind your eyes, these could be signs of Thyroid Eye Disease (TED) — a serious, progressive and potentially vision-threatening rare autoimmune disease.

TED mostly affects people who have thyroid disorders, like Graves' disease (hyperthyroidism) or Hashimoto's disease (hypothyroidism). In fact, up to 50% of people with Graves’ disease may develop TED - so much so that many people who have Graves’ disease assume it’s a normal part of the disease. However, TED is a separate condition from Graves’ disease, requiring separate treatment. If you or a loved one have Graves’ disease, it’s important to pay attention to your eyes. You should monitor your eye symptoms, write them down and report them to a TED Specialist. The sooner treatment is started for TED, the better.

Here’s more you should know about TED.

Who is at risk for TED?

  • Women are up to 5 times more likely to develop TED than men
  • Up to 50% of people living with Graves’ disease may develop TED
  • TED can also be seen in people who have Hashimoto’s or hypothyroidism
  • Smoking increases the risk of developing TED by 8 times
  • TED typically affects people ages 40-49 and 60-69

What are the symptoms of TED?

TED is often misdiagnosed for more common conditions, such as allergies and dry eye, because the symptoms can be similar. It is important to get an early diagnosis because TED gets worse over time, and delays in being properly diagnosed and treated can cause serious damage, both to your vision and to the appearance of your eyes.

Eye symptoms that can help you “IdentifEYE” TED:

  • Dry or gritty feeling
  • Feeling like something's stuck in your eyes
  • Watery, teary eyes
  • Redness
  • Eye pain and pressure behind your eyes
  • Bulging eyes and/or swollen eyelids
  • Eyelid retraction (pulled back eyelids)
  • Misaligned eyes (eyes point in different directions)
  • Sensitivity to light
  • Blurry and/or double vision
  • Loss of vision/color vision

What kind of specialist should you see?

While an ophthalmologist may be the first doctor you see for eye symptoms like these, if you have a thyroid condition, like Graves' disease, and are experiencing eye symptoms, you should see a TED Specialist. Because TED is a complicated disease, it is best treated by a trained eye specialist such as a neuro-ophthalmologist or oculoplastic surgeon.

“Receiving the correct diagnosis and starting treatment as soon as possible is crucial to managing Thyroid Eye Disease,” said Dr. Ana Carolina Victoria, oculoplastic and reconstructive surgeon and TED Specialist. “It’s important for patients to monitor their symptoms and get the support they need.”

How to find support as you manage TED

Because TED can negatively affect your vision, it can interfere with daily responsibilities and activities. Simple tasks like walking or driving can become hazardous, and many people find it difficult to work, especially on a computer. The disease can also cause physical changes to your appearance, which can lead to a loss of self-confidence and withdrawal from social settings. TED can be very isolating, so it's important to get support and know that you are not alone.

"After years of living alone with this condition, I discovered a community of others with TED," said California native Christine, who had been living with Graves’ disease for three years before she started noticing symptoms of TED. "Connecting with the right TED Specialist and other TED patients was so important because I finally felt understood and knew what steps I needed to take."

Consider learning more about TED or supporting a loved one living with the disease.

For more information or to find a TED Specialist near you, visit FOCUSonTED.com.

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