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What is a TED flare?

A TED flare is when TED symptoms appear again after a period of stability. In a study of 415 patients, 15.7% of patients experienced recurrent TED. Most of these cases occurred within the first 1O years after the first episode of TED.

TED, Thyroid Eye Disease.

Be Your Own Best Advocate

You have the power to take control of your care

Once you’ve found a Thyroid Eye Disease Specialist, you will want to make the most of your time with them on appointment days. Before your visit, use the tips on this page to help speak up for the care you deserve.

6 tips for TED self-advocacy

1

Don’t downplay your symptoms

You may feel reluctant to express your feelings about having TED and how it is impacting your life.

However, what you may see as complaining, your doctor will see as valuable information that they can use to help better manage your condition.

2

Be specific

The less detail you give your doctor about your condition, the harder it can be for them to understand your symptoms.

When describing your symptoms, be sure to:

  • Use descriptive language: “I’m very sensitive to light. Even the lights in my office hurt my eyes.”
  • Make a list of the ways TED has affected your daily life: “I’m not able to drive confidently anymore.”
  • Identify how long TED symptoms have been bothering you: “I first noticed pain behind my eyes about 2 weeks ago.”
3

Keep track of your symptoms

TED can change over time; symptoms may get worse or better, or new symptoms may develop.

Every change is important, and keeping track of it all can help your care provider better manage your disease.

4

Ask questions

If you have questions about TED, don’t be afraid to ask. Be sure to write down a list of questions to ask before going to your appointment.

These questions can help get the conversation going:

  • What specific changes should I look for when I check my eyes?
  • How often should I schedule appointments for my TED?
  • How will we treat my TED?

This helpful guide can help you to start a conversation with your TED Specialist.

5

Take notes

Taking detailed notes during your doctor’s visit is an important way to stay up to date about your condition. On appointment days, be sure to bring a pad and pen with you or use a note app on your smartphone.

6

Bring a friend or loved one along

Doctor appointments can be emotional. A friend or loved one sitting next to you during an appointment can help put you at ease. Since they will be in the room with you, they can also help you by taking notes during the appointment.

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Speaking up for yourself is just one way to get the support you need

TED, Thyroid Eye Disease.