Thyroid Eye Disease (TED)

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What is this information about?

This leaflet explains Thyroid Eye Disease (TED) what it is, what symptoms it can cause, how it is treated, and what to expect. 

Why have I been given this leaflet?

You’ve received this leaflet because you, or someone you care for, has been diagnosed with TED and is being treated by University Hospitals Sussex NHS Foundation Trust. 
It aims to answer common questions and help support you through the condition. 

What are thyroid disorders?

The thyroid gland is found in your neck and produces a hormone that controls your body’s metabolism (how your body uses energy). 

Sometimes the thyroid: 

• Makes too much hormone – this is called hyperthyroidism (also known as Graves’ disease) 
• Makes too little hormone – this is called hypothyroidism 

Both conditions can affect your eyes and vision. 

What is Thyroid Eye Disease (TED)?

TED happens when the muscles and tissues around the eyes become swollen and inflamed. This can cause the eyes to push forward and look more prominent or “staring.” 

Will everyone with thyroid problems get TED?

No, not everyone will develop TED. 

However, the risk is much higher in people who smoke. Smokers are around eight times more likely to get TED. 

Other risk factors include: 

• being male 
• being an older woman 
• having severe overactive thyroid function 

Can TED be prevented?

TED can’t always be prevented, but there are steps you can take to lower your risk: 

• Stop smoking – this is the most important thing you can do 
• Keep thyroid hormone levels well controlled through regular blood tests and medication 

How does TED affect the eyes?

TED can affect people in different ways. Some people only get mild symptoms, while others may have more noticeable changes.

You may experience: 

• dry or gritty eyes 
• swelling around the eyes 
• eyelids pulling back, making the eyes appear wider 
• a feeling of pressure behind the eyes 
• double vision 
• pain or discomfort when moving your eyes 
• bulging or ‘staring’ appearance

Will my eyes get worse?

In most people, symptoms come and go in the early stages, and may continue for several months to two years.

Eventually, the condition settles down on its own (becomes stable). 

We can’t predict who will recover fully or who might need further treatment, but once TED becomes stable, other options are available to help with symptoms or appearance. 

How is TED treated?

Treatment depends on how severe your symptoms are. Some common treatments include: 

• lubricating eye drops (artificial tears) – help with dryness and irritation 
• raising your head while sleeping – reduces swelling 
• water tablets – may help reduce puffiness 
• prisms on glasses – can reduce double vision in some cases 
• steroid tablets or injections – used if there is a risk to sight; these reduce inflammation, but can have side effects 
• radiotherapy – targets the swollen tissues behind the eye. usually given over 2 weeks. about 2 in 3 people find it helpful 

What if symptoms don’t improve?

In more severe cases, or when other treatments haven’t worked, the following may be considered: 

• Orbital decompression surgery – removes some bone around the eye to create space for swollen muscles (rare nowadays) 
• Eyelid surgery – helps correct a “staring” appearance 
• Eye muscle surgery (strabismus surgery) – can help with double vision

Will my eyes return to normal?

If TED is mild, the eyes may go back to looking and feeling almost normal. This can take 12 to 24 months. 

If TED is more severe, some changes may be permanent, but there are effective treatments and surgeries that can greatly improve how the eyes look and feel. 

Double vision may continue in some cases, but special prism lenses can be built into glasses for long-term use. 

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