Thyroid Eye Disease (TED)

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This leaflet is intended to answer some of the questions of patients, or carers of patients, diagnosed with Thyroid Eye Disease (TED) under the care of University Hospitals Sussex NHS Foundation Trust.

What are thyroid disorders?

The thyroid gland, located in the neck, produces thyroid hormone which helps regulate our metabolism. It may produce either too much thyroid hormone (hyperthyroidism) or too little (hypothyroidism). Another name for hyperthyroidism is Grave’s Disease. Thyroid problems can be associated with eye and vision problems.

What is Thyroid Eye Disease (TED)?

Swelling of the muscles and other tissues in the eye sockets cause the eyes to become pushed forward and more prominent. The eyes often take on a more staring appearance.

Will everyone with thyroid problems get TED?

No. Smoking increases the risk by eight times. The risk is worse in males, older women and in those with severe overactive thyroid conditions.

Can it be prevented?

Giving up smoking and careful checks of the thyroid blood level may help to prevent eye problems getting worse.

How does TED change the eyes?

There are many symptoms caused by TED and people are affected differently. You may experience some of the following symptoms but not every patient will be affected the same way.

• Dry, gritty eyes.
• Sense of pressure behind eye.
• Eyelids may swell.
• The eyelids may retract causing the eyes to ‘widen’.
• Double vision.
• Discomfort on eye movement.
• The eyes may protrude causing a ‘staring’appearance.
• Visual loss (this will be treated immediately).

Will my eyes get worse?

The above symptoms tend to fluctuate in the early stages. This may continue for a few months up to two years before settling down by itself. It is impossible to predict which patients will spontaneously improve and which symptoms will persist.

Once the symptoms have stabilised further treatment options become available.

How is TED treated?

• Artificial tears help irritation or redness.
• Sleeping with your head propped up or taking a water tablet can help reduce puffiness around the eyes.
• Double vision can sometimes be managed by attaching a prism to your glasses.
• If vision is at risk you may be prescribed “immunosuppressive” medication: this is usually steroids which can help reduce the inflammation which is a risk to sight. Steroids can have many side effects and so their use is considered very carefully by the doctor.
• Radiotherapy may also be considered to treat the tissues behind the eyeball, usually ten doses over two weeks.Two thirds of patients find this helpful.

In severe cases which have not responded to other treatments patients may need orbital decompression: this process provides more room for the swollen muscles, by the removal of some of the bone or the eye socket. Nowadays this operation is quite rare.

Once the disease has stabilised further options are available;
• Eyelid surgery can help reduce a ‘staring’ appearance.
• Double vision may also be treated with eye muscle surgery.

Will my eyes return to normal?

If your eyes are mildly affected they may return to nearly normal. This can take between 12 and 24 months.

If your eyes have been more severely affected it is less likely that the changes will disappear completely.

In this situation expert treatment is required and carefully planned surgery can be very effective in improving the appearance of the eyes.

This may require strabismus (eye muscle) and eyelid surgery.

However, neither is 100% effective but can certainly help to improve the cosmetic appearance of the eyes.

If double vision is persistent and temporary prisms have been used, it is possible to incorporate these into glasses for a long-term solution.

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