Frequently Asked Questions

Your questions about TED

1. Am I immunosuppressed or immunocompromised?

Graves’ disease and TED are autoimmune diseases. You are not immunosuppressed and most people with TED fight off infections as well as anyone else.

People with TED may become immunosuppressed if they are on certain medications.

Immunosuppressive drugs in use for TED include:

  • Prednisolone / methylprednisolone
  • Ciclosporin
  • Azathioprine
  • Mycophenolate
  • Methotrexate
  • Rituximab

If you are on any of these, you should consider yourself to be immunosuppressed and take appropriate precautions.

2. Can you have TED without the symptom of bulging eyes?

Yes you can have TED without the symptom of bulging eyes.

Bulging (proptosis) happens when the tissue behind the eyes is inflamed and swells, pushing the eyeball forwards. 

Thyroid eye disease can be mild or aggressive. Some have protrusion and some have drooping lids, some have double vision, some don’t. Some have eyelid retraction. Some have all symptoms and there are a lot of symptoms. You can have any or many of the symptoms, and it can fluctuate daily, weekly, even monthly. Plus it can occur in one eye or both.

3. Should I continue my medication if I get COVID-19?

Please continue your medication as usual unless discussed and agreed with your doctors. In particular, anti-thyroid drugs such as carbimazole/methimazole/propylthiouracil and thyroid hormone replacement such as levothyroxine do not pose any additional risk if you do catch coronavirus and should be continued.

If you are on immunosuppressive drugs, in most cases you are also better to continue. Many such drugs take several months to wear off from your system, so stopping now may not make any difference to your risk from the virus. However, many doctors are taking the practical stance that we might lower our threshold for reducing immunosuppression. It is likely that you will get a phone call from your prescriber who can advise you whether cutting down might be right for you.

Please note that steroids should not be reduced without medical supervision. In particular, drugs like prednisolone should not be stopped abruptly as this can have very dangerous consequences. Please also remember that of you are on immunosuppressive drugs, your blood monitoring will need to continue as usual.

4. Why do I need to wait until TED is inactive before having rehabilitative surgery?

The first reason for waiting is that the condition of your eyes may continue to change throughout the active phase, as tissues become more swollen or inflamed. Your eyes may also improve by themselves as your TED becomes inactive. If surgery is performed before all these changes are complete, you may not get good results as the eye muscles could change again. Hence it is better to try to treat active disease with medical treatments and proceed to surgery when inflammation has settled.

A second reason is that the tissues around the eyes are inflamed in active TED. Surgeons therefore worry that surgery could worsen this inflammation, causing more problems and a slower recovery if operations happen during the active phase.

An exception to this rule is when surgery must be done to preserve eyesight, which rarely can happen if swelling is bad enough to compress the optic nerve.

You can ask your surgeon about any concerns you may have regarding the timing of your surgery, and they should be able to explain the recommendations they are making for your particular case.

5. Why do my eyes water?

TED can make eyes water for a number of reasons. It is an inflammatory condition, and any inflammation on the eye surface can cause the eyes to water as a response. Your eyes produce tears as a reflex response to try to wash off irritants from the eye surface, but this reflex can be unhelpful when there is an ongoing inflammatory condition.

TED can lead to dry eyes. It may affect tear quality by affecting some of the small glands that contribute to the tear film, and tears may evaporate too fast if the eyes are bulging or lids retracted. Even though dry eyes do not sound like a logical cause of watering, the irritation of a dry eye can lead to response of a rush of tears from the main tear gland and hence bouts of watering. Hence if your doctor recommends lubricant drops for watery eyes, this is not as crazy as it sounds!

TED can also affect the position and shape of the eyes and the eyelids. This can make it difficult for tears to reach the tear duct openings in the inner corners of the lids. The tear duct itself runs down into the nose and is to usually affected by TED.

Often watering improves as TED becomes less active, or if surgery improves lid or eye positions. Some people need to use lubricant drops even after their TED has settled, and other unlucky ones may have ongoing watering despite treatment.

6. Am I likely to lose my eyesight if I have thyroid eye disease ?

No you are not likely to lose your eye sight. It is very rare for the vision to be severely affected. Even if this is the case, prompt immuno-suppressive treatment (for example, intravenous steroids) or surgery can usually improve the situation.

7. Should I give up smoking if I have thyroid eye disease?

Yes. If you are a smoker, it is important to stop smoking. Smoking is a major risk factor for thyroid eye disease. Smoking cessation aids faster recovery from active thyroid eye disease, and outcomes from the medical and surgical treatments are better if you don’t smoke. You should also avoid passive smoking.

8. Does TED cause light sensitivity?

Yes TED can cause light sensitivity/photophobia. It can help to wear tinted glasses and/or a wide brimmed hat. TED sufferers often find it difficult to drive at night.

9. Is there anything I can do at home to relieve the symptoms of TED?

  • Raising your pillows when you sleep. This can reduce puffiness around eyes on waking. Some people raise their beds with success.
  • Cooling eye masks. Sleep with a soft sleep mask over the eyes to stop the eyes popping open during the night leading to very painful corneal abrasions.
  • Stop smoking. Also avoid secondhand smoke and bonfire smoke at all costs too.
  • Use lubricating eye drops.
  • Take supplements. In particular selenium, royal jelly and turmeric.
  • Try dietary changes. Cutting down on alcohol, refined sugars and gluten can be affective.
  • Manage stress. Stress can make TED symptoms worse so mindful activities can be beneficial.
  • Maintain your thyroid levels. Try to avoid fluctuations in your thyroid levels by taking your thyroid medication as prescribed and have thyroid blood tests regularly to check your are on the correct dosage.

10. Should I avoid radioactive iodine (RAI) treatment if I have TED?

Radioactive iodine (RAI) treatment can worsen TED, especially in smokers and patients with pre-existing significant eye symptoms, those with severe hyperthyroidism or high serum TSH-receptor antibodies (the cause of Graves’ disease). It is therefore very important to discuss with your ophthalmologist what specialist precautions may be required, or if RAI treatment should be delayed.

11. Does taking selenium help with TED?

Patients with mild TED may benefit from taking selenium supplements. A dose of 200 microgrammes per day is recommended for six months in the first instance. This dose can be achieved from over the counter supplements or by consuming 3-4 brazil nuts daily.

Long term high dose administration of selenium (more than 400 microgrammes daily) can result in symptoms which include hair loss, brittle nails and a metallic taste in the mouth.

12. Can steroids really help with my TED?

Yes. Steroids can help with severe inflammation. Steroids can also reduce double vision by helping inflamed eye muscles to move more easily. They can also reduce redness and swelling of the eyes and eyelids and can help restore vision.

Steroids are not very effective at reducing protrusion of the eyes.

13. Is there any psychological help available for TED sufferers?

TED can severely effect the mental health of patients. It can lead to disability in extreme cases, and typically causes changes to appearance that are difficult to come to terms with. Sufferers often report that their self confidence is greatly impacted and many withdraw socially.

There is currently no routine psychological treatment available. However, compassionate and understanding peer support may be found at Thyroid Eye Disease Support UK which is a forum run by us here at TEDct.

Anybody suffering mild to moderate mental health difficulties due to the visual impact of TED is encouraged to contact the charity Changing Faces. Changing Faces support anyone who is experiencing appearance-related distress, regardless of severity. They focus on the impact the change has on you.

TEDct also has a helpline and welcomes enquiries from TED sufferers or those supporting TED patients. Our helpline number is 07469 921782 (09.00hrs -18.00hrs)

14. How is thyroid eye disease diagnosed?

Thyroid eye disease is usually, but not always associated with an abnormality of thyroid gland function.

If you are experiencing any of the first symptoms of thyroid eye disease ask your doctor or optician for a referral to see an ophthalmologist (specialist eye doctor). If you are managed by an endocrinologist already due to an underlying thyroid condition this is also another route for referral to an ophthalmologist.

You are the best judge of your eyes so if you notice any changes do be proactive and ask for a referral to an ophthalmologist. Unfortunately thyroid eye disease is often missed and patients can miss out on help and support in the early stages of the disease.

Diagnosis of thyroid eye disease is through a series of observations and non-invasive measurements of the eye. The tests include assessment of how well you see colour, your peripheral vision and eye movement ability.

You will also be sent for an MRI scan or a CT scan to check the swelling and soft tissue of the eye.

If you have not been diagnosed with an underlying thyroid disorder you will also have a blood test to check how well your thyroid is functioning.

15. Does thyroid eye disease have any other names?

Doctors refer to this condition using many other names including ‘thyroid
ophthalmopathy’, ‘thyroid associated ophthalmopathy’, ‘thyroid associated orbitopathy’, ‘Graves’ eye disease’ and ‘Graves’ ophthalmopathy’.