Thyroid Eye Disease (TED): What You Need to Know 

In this interview, Margarita Ochoa-Maya, MD, an endocrinologist and specialist in thyroid eye disease (TED), answers common questions about this rare autoimmune condition primarily affecting those with Graves’ disease, which can have serious effects on eye health.  

Here, you’ll learn what TED is, how it’s diagnosed, and treatment options to help manage symptoms and protect your vision. 

What is thyroid eye disease? 

Thyroid eye disease (TED) is a rare, serious autoimmune disorder affecting the eye muscles, and fat and connective tissue behind the eyes. It often occurs in people who live with autoimmune thyroid dysfunction, especially Graves’ disease (a form of hyperthyroidism). However, it can happen years before thyroid issues erupt.  

Thyroid eye disease can affect the way the eyes work and appear. Inflammation (swelling) and tissue changes can have unwanted effects on vision and a person’s quality of life. Community, trusted information, and emotional support can be found at the TED Community Organization, founded and run by those affected by thyroid eye disease. 

What causes thyroid eye disease? 

Thyroid eye disease is primarily an autoimmune-related process. This means the body mistakenly targets its own healthy tissues around the eyes (orbital tissues), leading to pain, physical changes of the eyes, and potential vision problems.  

While TED is commonly seen alongside Graves’ hyperthyroidism, it can also occur with other thyroid abnormalities such as hypothyroidism. Either way, it’s a separate autoimmune condition that can happen before, during, or after a diagnosis with an autoimmune thyroid condition.  

The insulin-like growth factor 1 (IGF-1 receptor or IGF-1R) pathway is now recognized as a significant contributor to the process. Because of this, some treatments blocking this process may benefit those affected by TED. 

How do I know if I have TED (what are the symptoms) — and how is it diagnosed? 

At first, you may not know that you’re developing TED. That’s because it can commonly be mistaken for eye irritation, allergies, dry eyes, or even conjunctivitis (pink eye). So, it can be normal to miss early symptoms.  

Symptoms can range from simple discomfort to complex vision and eye movement issues. 

While most individuals seek medical care when symptoms arise, research suggests that men take longer to seek care than women. Symptoms commonly include:  

• Discomfort 
• Pressure behind the eyes 
• Redness, swelling, dry eye 
• Bulging eyes (proptosis) 
• Eyelid pulls away from the eye, giving a “staring” appearance (eyelid retraction) 
• Double vision (diplopia) 
• Eyes struggle to work correctly together (ocular motility issues) 
• Visual impairment (can be sight-threatening in severe cases)

Once you seek care from an eye specialist, if they think you may have TED, they’ll consider your medical history and symptoms, perform an eye exam, and order other necessary testing. This may include:  

• Measuring eye bulging with an exophthalmometer 
• Obtaining thyroid lab tests  
• Completing imaging tests like an MRI or CT scans of the eye sockets 

Why is it important to seek prompt care for early symptoms of TED? 

Getting early care for thyroid eye disease is one of the best steps to protect your vision, appearance, and quality of life. 

If I have Graves’ disease, what is my risk of developing TED? 

Thyroid eye disease is a “rare” condition. This means there is a low incidence (a small number of new diagnoses every year) and a low prevalence (only a small portion of the population is affected at any given time).  

While it’s rare to experience TED, its impact can be life-changing, so it’s important to recognize the symptoms early and seek care. 

Who is at higher risk? Those who have been diagnosed with Graves’ disease, and women, particularly in their 60s. 

How is thyroid eye disease connected to type 1 diabetes

Thyroid eye disease and type 1 diabetes can coincide as they’re both autoimmune conditions in which the body kills off its healthy cells. 

If you live with type 1, you’re likely already getting yearly, dilated eye exams to check on the health of your eyes. These visits can help detect any signs of TED, especially if you see a retinal or glaucoma specialist. 

By catching the condition early, avoiding delays in diagnosis, and having good communication between your endocrinologist and eye specialists, your treatment and care will be well coordinated. 

Is thyroid eye disease treatable?  

Yes, thyroid eye disease is a treatable condition. It’s important to know that TED is separate from your thyroid conditions and will require different treatments. 

Initially, you may be prescribed corticosteroids for inflammation. If you also live with diabetes, it’s important to know that steroids will increase your glucose levels. Your diabetes care team can help adjust your diabetes management plan to improve your glucose time in range. 

Then, trying a biological medication to block the IGF-1 pathway may be suggested, as mentioned above. In some cases, TED may need to be managed with a surgical procedure. 

Alternative support can be found through visual rehabilitation, specialized eye treatments, and other measures to help with long-standing (chronic) symptoms.  

Left untreated, what are the serious side effects of thyroid eye disease? 

There can be serious lifelong complications if TED is left untreated. If TED progresses to a more severe stage, there can be sight-threatening complications, double vision, optic nerve issues, and permanent changes in appearance.  

That’s why it’s important to have regular eye exams and to see a provider with any noticeable changes in your eyes. While there are things that you can’t modify (genetics and autoimmune factors), there are others that you can, including: 

• Quitting smoking (nicotine and marijuana) 
• Following your thyroid disease management plan
• Catching TED symptoms early and seeking care while they’re easier to treat

The good news is: Early treatment can reduce your risk of TED-related complications, protect your vision and appearance, and improve your quality of life.