If you have red, swollen, or bulging eyes, you might have thyroid eye disease, or TED. It’s important to talk with your doctor about these symptoms, especially if you have hyperthyroidism. Your doctor is the best source of information about TED and can help you manage its symptoms.
Why It’s Important to Talk With Your Doctor
They are your best source of information about TED. They’ve treated other people with TED and kept up-to-date on the latest research. They can answer most of your questions about this condition and how to manage it.
They know your history. Your doctor knows your family history, medical conditions, typical test results, risk factors, and other things that can affect your thyroid and eye health. For example, radioactive iodine therapy is a treatment that can help with most Graves’ symptoms but can worsen TED. If you already have eye problems, your doctor can prescribe a form of treatment that is less likely to affect your eyes.
They can help you manage symptoms. TED can cause one or both of your eyes to be red, swollen, dry, or watery. Your doctor can suggest ways to help with these symptoms. If you have mild symptoms, they might recommend at-home strategies like using a cold compress, wearing sunglasses, or using eyedrops.
They also can prescribe steroids or other treatments. For example, steroids can help with pain, redness, and swelling caused by TED. A new drug called teprotumumab can help with double vision, inflammation around the eye, and eye bulging.
About 1 in 20 people with TED develop severe symptoms. You might not be able to fully close your eyes, develop eye ulcers, or lose your vision. Treatment can help preserve your vision and stop TED from getting worse.
They’re your partner. Your doctor is an expert on your condition, but you know your body best. Be honest about your symptoms and how you’re feeling. Learn more about your condition. If you have questions, ask. You and your doctor can work together to find the best treatment plan for you.
They can connect you with support. TED symptoms can be uncomfortable and change the way your eyes look. Eyes are an important part of your appearance and how you express emotions and connect to others. For some people, these changes can be upsetting. They might affect your self-esteem or social life.
But you don’t have to go through TED alone. Your doctor can provide advice, point you to online resources, and connect you with local support groups and nonprofits.
Finding a Specialist
Your primary care provider usually will refer you to a doctor or team of doctors who specialize in TED.
TED is a complex condition that involves the thyroid, eyes, and other parts of the body. Because of this, it’s often treated at a thyroid eye clinic by a multidisciplinary team of specialists. Each specialist is an expert on a different part of TED. They work together to understand your symptoms and make a plan for treatment. People who see a multidisciplinary team often have better outcomes.
Your treatment team might include:
- Ophthalmologist. This doctor specializes in eye disorders and their treatment.
- Endocrinologist. This doctor specializes in hormonal disorders like hyperthyroidism.
- Endocrine surgery specialist. This surgeon has received extra training on operations to treat hormonal disorders.
- Ear, nose, and throat specialist. This doctor specializes in disorders of the ears, nose, and throat. They also can do some types of head and neck surgeries. They're also called otolaryngologists.
What to Expect at Your Appointment
At your appointment, your doctor might ask about your family and personal medical history. You’ll probably have an eye exam. You also might need a blood test that checks your levels of thyroid hormone or immune markers for Graves’ disease. Some doctors might run imaging tests like an ultrasound, CT scan, or MRI.
Preparing for Your Appointment
- Write down symptoms. Think about when they first appeared, how often they happen, and whether there’s anything that makes them worse. Don’t forget recent changes in weight, sleeping patterns, sexual function, or period cycles if you get periods.
- Note any life changes. These can be changes in stress levels or major life events, like having a child or moving to a new city.
- Write down all your medicines and supplements. Some medicines or vitamins can cause symptoms that look like TED or might interact with drugs used to treat TED. Make a list of everything you take, the dosage, and how often you take it.
- Bring a notepad and pen. You might talk about many different things at your appointment. Writing things down can help you remember them all.
- Make a list of questions. It’s natural to have questions about a new diagnosis. Writing them down in order of importance can help you remember what to ask your doctor.
- Bring a friend. TED can cause many different feelings. A trusted friend or family member can help support you with these emotions.
Questions to Ask Your Doctor
- What kind of tests do I need? How do I prepare for them?
- If I have TED, could I also have hyperthyroidism? Vice versa?
- What treatments do you recommend for me?
- If I’m taking radioactive iodine for hyperthyroidism, should I also consider steroids?
- Should I consider taking selenium supplements?
- What are the side effects of treatment?
- How will this affect my other health conditions and their treatments?
- What can I do to manage my symptoms at home?
- How will TED impact my daily life?
- What symptoms should I look for to see if my condition is getting worse?
- When should I seek help right away?
- What’s the outlook for TED?
- Where can I find more information?
