Management Pathway:
Management of patients with thyroid eye disease (TED) is done in collaboration with your responsible endocrinologist and your general physician. In thyroid disease multiple organs are affected, including the eyes, therefore often many specialties are involved in your management.
At Pantheo eye center, we host a combined endocrinology-ophthalmology clinic which helps to better coordinate your care. Further, there is a multi-disciplinary team of orthoptist, optician and specialised nurses to help us with optimising your care.
During each eye consultation, your eyes are assessed for the level of inflammation and an activity score (CAS) is given according to the European Group on Graves’ orbitopathy (EUGOGO) classification. Based on your CAS score the ophthalmologist determines what treatment is indicated and then continues to review the CAS score at each visit to assess response to treatment. Our protocols for TED at Pantheo eye centre follow the EUGOGO guidelines.
The treatment given is tailored to each patient’s needs following discussion with their doctors. This depends on patient’s symptoms, other comorbidities and lifestyle demands.
Practical Guidelines and treatments:
Below listed are treatment options which are tailored to each patient’s needs. These will be discussed in detail with your ophthalmologist.
- Practical guidelines
Thyroid hormones
Your endocrinologist will work hard to optimise your thyroid hormone levels. This is done with tablets and each endocrinologist has his own approach as to how they achieve this. Studies have shown that improving thyroid hormone levels reduces eye inflammation. If it is difficult to maintain the thyroid hormone levels within normal ranges, then your endocrinologist might consider surgical removal of the thyroid or chemical destruction of the gland (radioactive iodine ablation).
Apart from thyroid hormones, we also measure thyroid antibody levels as high levels are associated with worse TED. The antibodies are measured at the onset of symptoms for diagnosis and later to see if the levels have dropped. If the levels remain persistently high, then your ophthalmologist will need to monitor you more frequently.
Smoking
Smoke contains thousands of chemicals and some of these can stimulate your immune system to react against the thyroid. Also smoking reduces the amount of oxygen in tissues and it has been shown that a low oxygen content makes tissues in the back of the eye prone to inflammation. The association between smoking and TED is strong and is also related to the number of cigarettes smoked per day. The more you smoke the worse the prognosis of TED. Smokers with Graves’ disease are about two times more likely to develop TED and heavy smokers are eight times more likely to develop TED. The risk seems to decline very rapidly after quitting. Passive smoking should also be avoided. There are not enough studies on vaping and TED to draw a conclusion, so our advice for now is to best avoid it.
If you need any specific treatment for your eyes (such as steroids, radiotherapy or surgery), the treatment will not work as well if you continue to smoke because it seems that smoking makes you resistant to treatment and healing of tissues is slower and less complete.
Your ophthalmologist and endocrinologist will strongly advise you to stop smoking and will offer cessation support (medical and counselling). Ask your ophthalmologist for further guidance for smoking cessation.
Selenium
Selenium is an essential trace element which acts as an antioxidant to protect cells in the body from damage. It is found naturally in foods including brazil nuts, seafood and meat and is added as a supplement to some grains and cereals.
Selenium supplements have been recommended by your ophthalmologist because they can slow the progression of mild to moderate TED and can improve the appearance and visual function of the eyes. The recommended dose of selenium is 200mcg daily for six months. If you are unable to take selenium, then you can eat 4-5 brazilian nuts per day as an equivalent.
We recommend stopping selenium for a week before, and during, any radiotherapy treatment. We also do not routinely recommend selenium supplements if you are pregnant or breastfeeding. Selenium may reduce the effectiveness of cholesterol-lowering drugs known as statins, but on balance, if you have significant eye symptoms, the benefits of selenium probably outweigh this possible temporary effect on your cholesterol levels.
Eyelid swelling
In thyroid eye disease the eye appearance of the patient changes significantly. There is often eyelid swelling which is worse in the morning. There are some practical steps you can take to reduce the swelling:
- Cold compresses. If you place a cold compress on the affected area, it can reduce some swelling. Be sure to apply a cloth or some sort of barrier between your skin and the cold compress so you are comfortable.
- Sleep on your back with your head elevated to reduce swelling and ensure you are not irritating your eyes by lying on your sides or stomach. Prop yourself up comfortably with few pillows as to elevate your head up and reduce fluid accumulation in the eyelids.
Lubricants
Dry eyes are a common complaint of thyroid patients. Patients might experience grittiness, redness, itching and discomfort. We recommend regular use of preservative free lubricants to keep the ocular surface moist and maintain good vision.
In small proportion of patients with significant proptosis of the eyes, the eyelids don’t fully close, and the surface of the eye remains exposed during the night. This causes the ocular surface to become dry and may result in vision loss. Your ophthalmologist will recommend you use a lubricating ointment at night for protection of the surface. In very severe cases of proptosis, taping the eye shut at night might be necessary.
Sunglasses
TED patients experience increase sensitivity to light causing tearing and discomfort. It is recommended you wear sunglasses when outside in the sun.
Prisms
TED may cause double vision which maybe transient or constant. The orthoptist (a specialist who measures eye movements) will assess your diplopia with specialised tests at regular intervals. They may also fit prisms, which are optical devices, on your glasses to alleviate the diplopia. If prisms fail to resolve the diplopia, then an occluder on one eye can be used. Patients are advised not to drive with double vision as it is not safe.
Radioiodine thyroid ablation
Radioiodine treatments may exacerbate your thyroid eye disease and it should be best avoided in moderate-to-severe TED. Please inform your ophthalmologist if you are planning to have radioiodine treatment so they can liaise with the team delivering the treatment for steroid cover.
- Medical therapies
Steroids
At each eye visit your ophthalmologist assesses the level of inflammation in your eyes and scores it based on the EUGOGO clinical activity scoring system. If the score exceeds a certain level, then they will discuss with you possible treatments for reducing the inflammation. If the inflammation is left untreated then it will lead to long-term functional and cosmetic changes to the eyes and may even result in irreversible blindness. Luckily, most patients have mild TED requiring only supportive treatments mentioned in the previous section and not any medical therapies.
The steroid treatment plan is based on the EUGOGO protocol. The treatment consists of one infusion given weekly over 12 weeks. If your vision is badly affected because of the TED, a more intense course of steroids may be given more regularly. The infusion is given over 1-2 hours while being monitored by a nurse. At each visit your blood pressure and blood sugar will be measured and a stomach protection medication will be given. Some pre-treatment blood tests will be requested to check your liver and kidney function. Your ophthalmologist will review your response to treatment at 1-2 monthly intervals.
Intravenous steroids are preferred rather than oral steroid tablets because they are more effective in treating TED and have fewer side effects. Steroids do not reverse the disfigurement (bulging eyes and retracted eyelids) caused by the disease but they are effective in controlling pain and improving symptoms of double vision that are caused by the inflamed eye muscles in many cases.
Not everyone experiences side effects when taking steroids but some people do. In the short term, the side effects are usually mild and will go away soon after you finish the treatment course. The most common side effects include a metallic taste, indigestion, difficulty sleeping, mood swings or altered mood and flushing of the face (redness), increased appetite, headache, palpitations (faster than normal heart rate), rash and swelling of the ankles. It is also important to check for signs of infection as steroids can make infections worse. Long-term treatment with steroids can lead to further potential side effects such as weight gain, diabetes, skin thinning, cataracts and osteoporosis (thinning of the bones). We therefore try to avoid giving more than one 12-week course of steroid therapy.
Steroids result in a relatively quick reduction of eye inflammation but is not long lasting. Therefore for maintenance, orbital radiotherapy or immunosuppression with tablets is recommended. Unlike steroids, their effects take months to occur and are longer lasting.
Orbital Radiotherapy
Orbital radiotherapy is a treatment given to decrease inflammation in the socket caused by TED. It involves low-dose radiation delivered to and around the eyes. Orbital radiotherapy is most beneficial for patients with double vision as it works better on reducing the swelling of the eye muscles improving eye movements. Benefits of orbital radiotherapy take several months to be seen and is therefore usually given in combination with intravenous steroids.
Therapy is performed in an outpatient setting with divided doses over multiple visits. A pre-treatment CT of the eyes is performed to map out the area of delivery of treatment and for baseline evaluation of inflammation in the socket. The CT will be repeated at 6 months post treatment to assess response. The two centres that offer orbital radiotherapy are the German Oncology Centre in Limassol and the Bank of Cyprus Oncology in Nicosia.
Like other procedures, orbital radiotherapy has possible side effects. Many of these side effects are mild and affect the area of treatment only (skin redness, hair loss around temples, dry eyes).
Orbital radiotherapy may rarely cause problems to the retina, which is the thin layer of tissue that lines the back of the eye. This is mainly seen in patients who already have a compromised blood circulation to the retina because of diabetes or uncontrolled high blood pressure. Therefore, diabetes and chronic uncontrolled high blood pressure are relative contraindications for orbital radiotherapy and are best avoided. Finally, radiotherapy can increase the risk of developing a cataract.
Immunosuppression
Immunosuppression medications stop the eyes from becoming inflamed again while reducing the risk of causing damage to your eyes when you stop the steroid treatment. There are several immunosuppression tablets but the two most commonly used in TED are azathioprine and mycophenolate mofetil.
Immunosuppression therapy is started by the rheumatologist who is most experienced with using these treatments. The rheumatologist will assess your suitability for each drug, will request specific blood tests and will discuss with you possible side-effects. Your ophthalmologist in collaboration with the rheumatologist will monitor you for possible side-effects and your response to treatment. TED patients usually remain on immunosuppression for at least 1-2 years.
- Surgery
Surgery is required in only a small number of patients with TED. Usually, surgery is planned when your eye symptoms have reached the inactive phase (symptoms have stabilised). Very rarely, emergency surgery is needed if you have any vision loss.
You may need more than one type of eye surgery. If so, your ophthalmologist will let you know the best timing and order for the different procedures. Several types of ophthalmologists may be needed. All TED surgeries should be done at a medical center that specializes in the type of surgery you need.
Orbital decompression surgery
If your eyesight is in danger and/or you have significant eye bulging, a type of surgery called orbital decompression can be done. In this procedure, bone in the wall of your eye socket (orbit) is removed. Also, fat can be removed from the eye socket to allow more space for the swollen tissues. This procedure provides room for your eyes to return to their normal position. It can also improve your vision if there is compression of the optic nerve.
Most of the time this type of surgery is not scheduled until the inactive phase of your symptoms is reached. However, emergency orbital decompression can be done if compression of the optic nerve is reducing your vision and you have not responded to medical therapy such as steroids.
Eye muscle surgery
Sometimes scar tissue and other changes in your eyes can cause one or more eye muscles to be too short or too tight. This pulls your eyes out of alignment, leading to double vision. Eye muscle surgery may help correct double vision. The affected muscle is detached from your eyeball and reattached so that your eyes move together. In some cases, you may need more than one operation to improve double vision.
Eyelid surgery
Eyelids can be retracted, leaving your eyes more widely open. This can cause you to have difficulty closing your eyelids. This leaves your eyeballs more exposed, causing excessive tear production and irritation. Surgical repositioning of your eyelid may help reduce the irritation.
Coping
The course of the disease can vary and in some cases be prolonged lasting several years. Most patients have mild TED requiring only supportive treatment and regular monitoring. Few patients may have more aggressive disease which can affect their vision and cause disfigurement. This can have a significant impact on your psychological and social well-being. Having low mood and avoiding people is not unusual in TED patients. Our staff are here to support you so do not hesitate to ask for help and advice.
Useful Links
https://rarediseases.org-thyroid-eyedisease
Support Group
Listed below are some thyroid eye disease support and advocacy organisations:
