Thyroid Eye Disease

A big part of managing thyroid eye disease (TED), also called Graves’ eye disease, or any autoimmune condition is working with multiple health care providers throughout your journey. Since TED affects both your thyroid and your eyes, your care team may include a primary care provider, a thyroid specialist, an eye specialist, a mental health professional, and possibly other specialists.

Each provider plays a role in your treatment, but communication between them isn’t always seamless. That’s why taking an active role in your care can make a big difference. It can help you:

• Understand TED and how it affects you. The more you know, the better you can advocate for yourself.
• Stay organized with updates from your care team. Tracking appointments, test results, and recommendations keeps everyone on the same page.
• Explore your treatment options. Knowing what’s available can help you choose the best plan for your needs.
• Take a whole-health approach. Managing TED isn’t just about your eyes or thyroid; it’s about your overall well-being.

Taking charge of your care also gives you a greater sense of control over your health. You get to decide who is on your team and what role they play in supporting you.

Building Your Thyroid Eye Disease Care Team

Managing TED is easier with the right team in place. From medical specialists to supportive loved ones, your care team can help you navigate symptoms, treatment options, and daily life.

Your Core Health Care Team

• Primary care doctor (PCP): Your first point of contact for general health concerns, referrals, and coordinating care among specialists.
• Endocrinologist: A specialist in hormone-related conditions like Graves’ disease and Hashimoto’s thyroiditis who helps manage thyroid-related issues.
• Optometrist: A provider who assesses vision, prescribes glasses (including prism lenses for double vision), and refers patients to specialists if needed.
• Ophthalmologist: A medical doctor specializing in eye diseases, monitoring TED progression, managing treatment, and performing surgeries when necessary.

Other Specialists Who May Care for You

• Oculoplastic surgeon: An ophthalmologist with expertise in eye and facial surgery, often involved in correcting vision and comfort issues related to TED.
• Radiation oncologist: If radiation therapy is recommended to reduce TED-related inflammation, this specialist administers treatment.
• Neurologist: If TED affects the nerves around your eyes, a neurologist may help manage symptoms.
• Rheumatologist: If you have multiple autoimmune conditions, a rheumatologist may assist in managing overlapping symptoms.
• Mental health professional (psychologist or psychiatrist): TED can impact emotional well-being, and a mental health provider can offer support, coping strategies, and medication if needed.

Additional Support Providers

• Nurse practitioners and clinical nurses. Can assist with medication guidance, symptom management, and answering questions about treatment.
• Pharmacist. Provides medication advice, explains side effects, and helps track prescriptions.
• Occupational therapist. Helps adapt your home, work, or daily activities to manage vision challenges.
• Patient advocates or case managers. Assist in coordinating care, navigating insurance, and addressing logistical concerns.

Widening Your Support Network

Your care team isn’t just made up of medical professionals — your personal support system is just as important. Consider including:

• Family members, friends, or caregivers. They can provide emotional support and assist with daily needs.
• Peer support groups. Whether in person or online, connecting with others who understand your journey can be invaluable for sharing experiences and advice.

Choosing Your Thyroid Eye Disease Care Team

Building the right care team for TED starts with finding providers who listen, respect your concerns, and collaborate effectively. Your primary care doctor can help determine which specialists you need, but you can also ask trusted family members, friends, or patient communities for recommendations.

Steps to Find the Best Providers

• Ask for referrals from doctors, support groups, or patient networks.
• Research credentials and reviews to learn about their expertise and approach.
• Schedule an initial visit to see if they communicate well and align with your needs.
• Trust your instincts—if something doesn’t feel right, keep looking.

When to Get a Second Opinion

If a provider isn’t the right fit or you disagree with their recommendations, you have every right to seek a second opinion. You’re not obligated to stay with a specialist just because you were referred to them, and switching primary care doctors is also an option if yours isn’t meeting your needs.

It’s common to book a consultation with a different provider to explore your options. You can also request to transfer your medical records—health professionals understand that patients need the best possible care team.

By taking an active role in choosing your providers, you can build a team that supports your health and helps you manage TED more effectively.

Paying for TED Care

Managing thyroid eye disease (TED) often involves multiple health care providers, and costs can add up. Your options for covering expenses will depend on where you live, your financial situation, and available health programs.

• Public health programs: Many countries offer government-funded health care programs that help cover the cost of doctor visits, specialist care, and medications. Check what’s available in your region.
• Private health insurance: If you have private insurance, review your plan to understand what’s covered, including specialist visits, vision care, and additional treatments.
• Disability or chronic illness support: Some governments and nonprofit organizations provide financial assistance or discounted health services for people with chronic conditions.
• Community health resources: Local clinics, hospitals, and patient advocacy groups may offer low-cost or free services, including financial aid programs.
• Employer benefits: If you have workplace health coverage, see if your employer offers additional support, such as flexible spending accounts or reimbursement for medical costs.

Always talk to your health care providers if you are having trouble paying for treatment.

Staying Organized for Better Care

With multiple providers involved in your care, staying organized can help you keep track of treatments and appointments. Try:

• Keeping a list of medications and sharing it with your care team.
• Tracking appointments and writing down questions before visits.
• Using health apps or journals to monitor symptoms and treatment plans.

If managing everything feels overwhelming, ask a trusted friend, family member, or patient advocate for support. Some health organizations also offer case managers who can help coordinate your care.

The Most Important Member of Your TED Team: You

Your care team is there to support you, but the most important person in managing TED is you. The more you learn about your condition and use available resources, the easier it will be to take control of your health and well-being.

This information should never replace the information and advice from your treating doctors. It is meant to inform the discussion that you have with health care professionals, as well as others who play a role in your care and well-being.

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