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Questions When Changing Treatment for TED

What to ask your healthcare provider when discussing new medications or surgery for thyroid eye disease (TED).

A senior man and his healthcare provider read through a brochure about a thyroid medication at the healthcare provider's office.

Updated on May 28, 2024

Also known as Graves’ eye disease, thyroid eye disease (TED) is an autoimmune disorder, a condition where the body’s immune system attacks healthy tissues. In the case of TED, this autoimmune attack is directed at the muscles and supportive tissues that surround the eyes. This can cause the eyes to protrude and the eyelids to contract, resulting in eyes that bulge forward. This can cause dry eye and other forms of discomfort. It can also cause vision problems, including double vision.

TED is caused by having another autoimmune condition called Graves’ disease. With Graves’ disease, the immune system primarily attacks the thyroid gland, a hormone-producing gland located in the front of the neck, though it can also affect other organs.

Treatment for TED

A treatment plan for TED can include remedies to ease discomfort, lifestyle changes to slow progression, medications, and surgery. A person being treated for TED will also need treatment for Graves’ disease—while the conditions occur together, they are separate conditions that require separate treatments.

The approach to treatment for TED that your healthcare provider recommends will depend on a number of factors, including the symptoms, the severity of symptoms, and whether the disease is in an active phase or stable phase.

  • During the active phase of TED, the immune system is actively causing damage to the tissues around the eyes. During this phase, a person may be prescribed corticosteroids, biologic therapies, or other medications that control inflammation and act on the immune system.
  • In the stable phase, the immune attack has ceased, but the damage to the tissues around the eyes can require further treatment, such as surgery.

Questions when changing treatment

A person with TED may require several different therapies during the course of their treatment. Here are some questions to ask your healthcare provider when you are discussing a change in your treatment plan:

If you are being recommended a medication:

  • What is the name of the medication and the dosage?
  • How does the medication work?
  • How is the medication taken?
  • How often will the medication be taken?
  • What is the goal of taking this medication? How will we know it is working?
  • How long will I need to take this medication?
  • What are the potential side effects? Is there a risk of serious side effects?
  • How will I feel while taking this medication?
  • Are there things I will need to avoid while taking this medication, such as certain foods or activities?
  • Can this medication interact with other drugs or supplements? Always tell your healthcare provider about all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
  • What will this medication cost? Who can I talk to if I have concerns about the cost of this medication?

If you are being recommended surgery:

  • What is the name of the procedure?
  • What is the goal of the procedure? What kind of result can I expect?
  • What are the potential side effects or risks of this procedure?
  • Do I need any tests or exams before this procedure?
  • What healthcare provider will perform this procedure?
  • Are there alternatives to this approach?
  • What will the procedure cost?
  • What will the recovery process be like?

Remember, your healthcare provider is your best source of information—if you have questions, need an explanation, or have concerns, talk to your healthcare provider.

Article sources open article sources

NCI Dictionary of Cancer Terms. Autoimmune disease.
Penn Medicine. Thyroid Eye Disease (Graves' Disease).
Kierstan Boyd. What Is Thyroid Eye Disease (TED) or Graves' eye disease? American Academy of Ophthalmology. June 15, 2023.
Binod Pokhrel and Kamal Bhusal. Graves Disease. StatPearls. June 20, 2023.
Shalin S. Shah and Bhupendra C. Patel. Thyroid Eye Disease. StatPearls. May 22, 2023.
University of Michigan Health Kellogg Eye Center. Thyroid Eye Disease - What to Expect.
Stanford Medicine. Thyroid Eye Disease (Graves' Eye Disease).
MedlinePlus. Taking medicines - what to ask your provider.
Johns Hopkins Medicine. Questions to Ask Before Surgery.

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