Coordinating care for thyroid eye disease (TED)

Thyroid eye disease (TED) is a condition that affects some people who have a thyroid disorder called Graves’ disease. Both Graves’ disease and TED are autoimmune disorders, conditions where the body attacks and damages healthy tissue.

With Graves’ disease, the autoimmune attack affects the hormone-producing thyroid gland located in the front of the neck. This causes an overproduction of thyroid hormone, a substance that regulates processes in nearly every system in the body. Graves’ disease can cause unintended weight loss, abnormal heart rate, fatigue, mood changes, and many other symptoms.

In TED, the autoimmune attack affects the soft tissues that surround and support the eyes. This causes the eyes to protrude forward from the sockets, giving the eyes a bulging appearance. TED can also cause pain, irritation, light sensitivity, and double vision.

TED and Graves’ disease require multidisciplinary care

Most people with TED will already be managing two health conditions that can cause a wide variety of symptoms. Treatment will involve multiple healthcare providers with different specialties:

• An endocrinologist to oversee the treatment of Graves’ disease and thyroid-related symptoms
• An ophthalmologist to oversee treatment for TED
• An oculoplastic surgeon if surgery is required to treat TED
• A primary care provider to oversee general healthcare needs

Counselors, social workers, case managers, and mental health professionals are valuable members of a healthcare team. Changes to facial appearance can cause significant emotional distress. Thyroid problems can change how a person feels and functions. Depression and anxiety are common.

The need for care coordination

In order to provide you with the best care possible, your healthcare providers need to be able to share information and communicate with one another. This is known as care coordination.

One of the most effective strategies is to work with a multidisciplinary team that is based in a single location. For example, an endocrinologist and an ophthalmologist that work at the same hospital or medical clinic as part of a team that provides comprehensive care for Graves’ disease and TED.

However, many people with TED will find themselves coordinating care for different providers at different clinics. This requires more time, effort, and organization for people with TED and caregivers.

Here are two strategies that can help.

Have a designated “point person” for your healthcare team

The point person is the main point of contact for all of your healthcare providers. It may be a case manager or social worker. Because TED symptoms often appear in people who are managing a diagnosed thyroid disorder, an endocrinologist is often in a good position to act as a point person for treatment.

A point person should have an overview of all aspects of your medical history and treatment, as well as contact information for every other healthcare provider that you are working with.

Maintain a personal health record

Maintain a file that contains all information related to your diagnosis and treatment. This is sometimes called a personal health record. It should include:

• Results of any diagnostic tests and exams
• Evaluations and notes from your healthcare providers
• Information about your medical history, including any coexisting conditions, procedures, hospitalizations, or other major medical events
• A current list of all medications that you take, including prescriptions, over-the-counter medications, and supplements (including herbal products)
• Contact information for all members of your healthcare team
• Insurance information and copies of relevant financial documents, including bills, receipts, and explanation of benefits (EOB) statements
• Your own notes used to prepare for appointments or written during/after appointments

Keeping all relevant information in one place will make it easier to share information with your providers, your insurance company, and any new specialists you need to see.