Be Your Own Best Advocate

You have the power to take control of your care

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

6 tips for Thyroid Eye Disease self-advocacy

1. Don’t downplay your symptoms

You may feel reluctant to express your feelings about having Thyroid Eye Disease (TED) and how it’s impacting your life.

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

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2. Be specific

The less detail you give your doctor about your condition, the harder it can be for them to understand the true impact of TED on your life.

When describing your symptoms, be sure to:

  • Use descriptive language: “I’m very sensitive to light. Even the light from a computer hurts my eyes.”
  • Make a list of the ways TED has affected your daily life: “I’m not able to drive 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. The symptoms you have may get worse or better, and you may have new symptoms develop over time.

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

Answer a few questions to track your TED symptoms:

Use the TED Symptom Survey

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 out for when I check my eyes?
  • How often should I schedule appointments for my TED?
  • How will we treat my TED?

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.

If you find it difficult to take notes and listen at the same time, ask your doctor if you can record your conversation using your phone. That way, you can focus on what they have to say and take notes later.

6. Bring a friend or loved one along

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

TED Symptoms eye icon TED Symptoms eye icon

Speaking up for yourself is just one way to get the support you need.
Learn about other tips that can help you manage TED.

Real TED patient. Real TED experience.

Watch what a patient living with TED has to say about taking charge of her care.

Video preview of TEPEZZA patient, LaQuilla

“My advice to anyone suffering from Graves’ disease and Thyroid Eye Disease: you have to be strong and learn to be an advocate for yourself. And that’s what I started doing. Because I wasn’t getting the help that I needed.”- LaQuilla, real TED patient