The active stage of thyroid eye disease (TED) is when there is inflammation in the tissues around the eyes. Symptoms can fluctuate during this period, and can last for just a few months or up to two years. The purpose of treatments in the active stage is to reduce inflammation, improve symptoms and protect your eyes. After about two years the TED has usually ‘burnt out’ and become inactive. At that stage, treatments tend to focus on restoring the function and appearance of the eyes as much as possible. 

The treatments that are available will therefore depend on the stage of the disease and whether the TED is still active.

Content overview

Lubricants

Selenium supplements

Steroids

Immunosuppressant agents and radiotherapy

Orbital decompression surgery

Managing double vision

Eyelid surgery

Further information about treatments

Lubricants

Treatments during the active stage of TED for most people will involve soothing or ‘moisturising’ eyes which may feel dry, gritty, watery or uncomfortable. Treatments are likely to be eye drops (a watery liquid), gels (which are thicker and last longer) and ointments (which provide more lubrication, but which may cause blurring of vision). There are a range of preparations available, so if the first option does not work, discuss others with your doctor.  If the eye drops irritate your eyes, you may need preservative-free drops.

Selenium supplements 

Some evidence suggests that taking selenium supplements (200 micrograms daily) for 6 months may help people with mild to moderate, active thyroid eye disease. It is important to check with your doctor whether taking supplements is safe for you, especially if you are taking other medications as well.

Steroids

In cases where there is more significant inflammation your eyes may need to be treated with steroids which aim to suppress the immune system which is affecting the tissues behind the eyes. These should help reduce redness and swelling of the eyes and the eyelids and can help with double vision,. However, steroids are not very effective at reducing protrusion of the eyes. Steroids may be given as tablets or intravenously.

Immunosuppressant agents and radiotherapy

Sometimes steroid treatments can be combined with other treatments, known as immunosuppressive agents, such as mycophenolate or rituximab. In more severe cases orbital radiotherapy treatment may also be considered to treat the tissues around the eyeball and prevent optic nerve damage.

Orbital decompression surgery

In very severe cases, emergency orbital decompression surgery may be needed to create more space for the enlarged soft tissues behind the eyes. It can be performed as an emergency to relieve pressure on the optic nerve and prevent sight loss. However, it is more commonly used when the active stage of TED has burnt out, if there is a lot of protrusion of the eyeballs. People can sometimes be left with some double vision after decompression surgery.  Changing the position of the eyes can also affect the appearance of the eyelids.  People may therefore need further surgical procedures following decompression.

Managing double vision

An orthoptist is an eye professional who is expert in managing double vision. They will advise you about the different options which may be suitable to alleviate any sight difficulties you have. During the active phase these are more likely to involve prisms attached to your glasses, or an occlusion (a patch or filter) which can temporarily cover one eye.

If there is some remaining double vision once the TED has become inactive, it may be treated with eye muscle surgery to re-align the eyes, or prisms incorporated into your spectacles. Alternatively, botulinum toxin (Botox) can be injected into the eye muscles to help align the eyes, although the effect is temporary.

Eyelid surgery

After the active stage of TED has burnt out, this surgery can be helpful to alter the position of the eye lids. It is used to improve appearance, eyelid closure and the comfort of the eyes  If more than one surgical procedure is needed, it is usual for decompression to be done first, followed by squint surgery and then eyelid surgery. 

There are newer treatments being developed but these are not yet available through the NHS.  Many of these treatments have not yet been compared to steroid injections and they are much more costly than steroids, so ongoing research is still needed to determine their place in the NHS. You should ask your specialist doctor if you may be eligible to take part in any clinical trials for these newer treatments.  

Further information about treatments

Orbital decompression surgery 

RNIB leaflet