Manage Your Thyroid Eye Disease

Tips for discussing Thyroid Eye Disease with your doctor

Thyroid Eye Disease (TED) is a complex disease with unique treatment needs. That’s why it’s so important that you get the right care from the start.

If you are experiencing eye symptoms or are at risk for TED, find a TED specialist today and request a baseline eye exam.

Be your own best advocate

Once you've found a doctor, or team of doctors, who specialize in TED, below are some tips to get the most from every appointment with them.

After all, TED is a time-sensitive condition. Medicines have only been shown to help sign and symptoms during Active TED.

At your next doctor's visit, use the tips below to ensure you voice is being heard, and you're getting the care you need.

Be your own best advocate when discussing your thyroid eye disease symptoms Be your own best advocate when discussing your thyroid eye disease symptoms

Self-advocacy tips for Thyroid Eye Disease

Share your symptoms and concerns with your thyroid eye disease specialist

Don’t downplay your symptoms

You may feel reluctant to share with your doctor how TED really makes you feel.

But remember, every little bit of information helps your doctor decide the best way to manage your TED.

Use descriptive language when talking to your Thyroid Eye Disease specialist

Be specific

When describing your symptoms, be sure to:

  • Use descriptive language: “I’m very sensitive to light. Even a small light hurts my eyes.”
  • List out the ways it has affected your daily life: “I'm not able to drive anymore.”
  • Identify how long it’s been bothering you: “I first noticed light hurting my eyes about 2 weeks ago.”
Take notes during your Thyroid Eye Disease specialist visit

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. That way, you can focus on what they have to say and take notes later.

Track how your Thyroid Eye Disease changes over time

Keep track of your symptoms

TED can change over time. The symptoms you experience can 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.

See how to track changes to your eyes:

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Ask questions when speaking with your Thyroid Eye Disease specialist

Ask questions

If you have questions about your 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 trying to spot TED?
  • How often should I schedule appointments for my TED?
  • How TED is treated?
Bring a friend to your appointment

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.

And since they’ll be in the room with you, they can also help you by taking notes during the appointment.

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Have Graves’ disease and are experiencing eye symptoms? Find a TED specialist near you and request a baseline eye exam.