Thyroid eye disease (TED), also known as Graves’ ophthalmopathy or Graves’ orbitopathy, is an inflammatory condition that affects the tissue behind the eyes. TED is caused by an autoimmune disease of the thyroid. The underlying thyroid disorder causing TED is usually Graves’ disease (a type of hyperthyroidism), but TED may rarely be due to an underactive thyroid (hypothyroidism).

Managing TED symptoms such as bulging eyes (also called proptosis), dryness, watery eyes, red eyes, or double vision can be difficult and requires specialized medical care. In this article, we’ll provide tips for finding the best care for TED.

1. Learn Why Specialists Matter

Thyroid eye disease is a relatively uncommon disease. Uncommon diseases require doctors who are specialized because generalist doctors don’t treat many people with this condition. For the most targeted care, it’s best to see a doctor who sees patients with your condition very often.

Health care specialists with experience in treating TED are better equipped to diagnose the condition accurately and develop tailored treatment plans. They have a deeper understanding of the symptoms of TED, potential complications, and the latest advancements in TED treatment options. Specialized care makes sure that you receive the most effective management for your condition.

2. Understand the Types of Specialists

People with TED need special doctors who know about the eyes, brain, and endocrine system. The kinds of doctors you see may depend on your specific circumstances.

Specialists who treat TED may include the following:

• Endocrinologist — If you have thyroid problems such as Graves’ disease, you will likely see a doctor that focuses on the hyperthyroidism that causes TED. This is probably the best place to start your TED treatment journey, as they can recruit more specialized doctors onto your care team.
• Neuro-ophthalmologists — These eye doctors specialize in vision problems related to the brain. They can diagnose your specific vision problems, as the symptoms of TED are different for everyone.
• Oculoplastic surgeons — These surgeons specialize in plastic surgery around and behind the eyes, especially the soft tissue and eyelids. If you have surgery for your TED, they may be a major part of your surgery team.
• Strabismus surgeons — These eye surgeons correct strabismus (crossed eyes), which is a common side effect of TED. They perform surgery on the eye muscles, which may also be part of your care.

You may see one or more of these and other specialists, who will work together to ensure your well-being before, during, and after treatment.

3. Seek Referrals

It’s sometimes hard to get connected to an eye specialist right off the bat. Your insurance or the specialist’s medical office may require a referral first.

Start by consulting your primary care physician or endocrinologist for referrals to TED specialists. They can recommend health care providers with expertise in TED or connect you with medical centers that specialize in treating autoimmune-related eye conditions. Your primary care doctors should continue to play a large role in your care, checking in about your specialist visits and coordinating care among multiple medical teams.

4. Seek Care at Research Medical Centers

Look for medical centers or hospitals known for their expertise in treating TED. Academic medical centers often have specialized clinics or departments focused on conditions that affect the eyes and thyroid gland. These medical centers may offer more comprehensive care, including access to advanced tools for diagnosis and treatment.

5. Use Online Resources

Explore online platforms and databases that provide information about health care providers and medical specialties. Websites like Healthgrades, Zocdoc, and RateMDs allow patients to search for doctors based on their specialty, location, and patient reviews. Additionally, professional organizations such as the American Academy of Ophthalmology and the American Thyroid Association have directories of doctors who may be right for you. Finally, there may be a feature to search for doctors through your insurance company and confirm that your insurance will cover their care.

6. Check Credentials and Experience

Once you’ve identified a potential TED specialist, research their credentials and experience. Look for a board certification in ophthalmology or relevant subspecialties such as neuro-ophthalmology or oculoplastic surgery. Consider the number of years the doctor has been practicing and whether they have specific expertise in treating TED. Review patient testimonials and any publications or presentations related to TED to gauge their level of expertise.

7. Consider Accessibility

Accessibility is another important factor to consider when choosing a TED specialist. Accessibility may include location, cost, availability of the provider, and more.

Evaluate the location of the health care provider’s office or clinic, as well as the availability of appointments. Are they taking new patients? What is the wait like? If you need to see your doctor often or need special treatments, picking a provider who is close to where you live can make living with your condition easier.

Check with your insurance company before your first appointment to make sure your care is covered without massive copays.

8. Consider Consulting With Multiple Specialists

In complex cases, it may be helpful to seek recommendations from more than one specialist. Different health care providers may offer varying perspectives and treatment approaches. These opinions can allow you to make informed decisions about your care. Collaborating with a team of experts ensures that your condition is fully evaluated and addressed.

9. Ask Questions

Don’t hesitate to ask questions during your consultations for TED. Inquire about their experience treating TED, all of your treatment options, and the outcomes of their previous patients. Clarify any concerns about your treatment plan. A good specialist will take the time to answer your questions and personalize your care to your health goals.

10. Follow Up Regularly

Once you’ve selected a TED specialist and started treatment, make sure to stick to all follow-up appointments. Thyroid eye disease is a condition that may require close monitoring and adjustments to your treatment plan. Regular follow-up allows your doctor to assess your progress, address concerns or complications, and make necessary modifications to optimize your health outcomes and quality of life.

Talk With Others Who Understand

On TEDhealthteam, the social network for people with thyroid eye disease and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with TED.

What kinds of doctors do you see for your TED? What tips do you have for others looking for TED medical care? Share your experience in the comments below, or start a conversation by posting on your Activities page.