Thyroid eye disease. Department of Ophthalmology Directorate of Operations Diana Princess of Wales Hospital

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1 Thyroid eye disease Department of Ophthalmology Directorate of Operations Diana Princess of Wales Hospital This leaflet has been designed to give you important information about your condition / procedure, and to answer some common queries that you may have.

2 What is thyroid eye disease? Thyroid eye disease is an autoimmune condition. Autoimmune means that your own white blood cells or antibodies are causing damage to parts of your own body in addition to their normal role of protecting you against infections. The damage caused in Thyroid eye disease is to the area of fatty tissue behind the eyes. Swelling of the fatty tissue can cause the eyes to become red and for swelling to occur above and below the eyes. This can also cause the eyes to be pushed forward (starey eyes, proptosis). In severe cases the damage at the back of the eye can cause swelling and stiffness of the muscles that move the eye, causing double vision, especially when you look from side to side as the muscles cannot keep the eyes exactly in line with each other. Occasionally, the swelling behind the eyes is bad enough to press on the nerve from the eyes to the brain affecting vision. What else can Thyroid eye disease be called? Doctors call this condition many different names including: thyroid ophthalmopathy, thyroid associated ophthalmopathy, Graves eye disease and Graves ophthalmopathy. Will I lose my sight? It is very rare for the vision to be severely affected. Even when it is, prompt surgery or immunosuppressive treatment can usually improve the situation. The main symptoms and treatments for thyroid eye disease Irritation and redness of the eyes Artificial tear drops (hypromellose eye drops) will usually give relief. These drops are harmless and can be applied as often as required even as often as hourly. For longer effect a lubricating eye ointment may be used during the day or night. Puffiness around the eyes This is more difficult to treat. It is worse in the morning after lying flat and may be helped by using an extra one or two pillows to raise your head at night, raising the head of the bed on blocks or using a diuretic (water tablet) at night time. Usually the swelling does improve after several months as the eyes settle. In severe cases Surgery may be used to improve the appearance. Starey eyes (Proptosis) In mild cases this problem usually gets better with time as the eyes settle. When it is severe and has been present a long time then it may not go away. Once the eyes are stable and not changing any further, the appearance can be improved with surgery to the eyelids, some people find tinted spectacles helpful to disguise the appearance. Double Vision If this only occurs from time to time and/or when you look out of the corner of your eyes then it should not interfere with normal activities and does not require treatment. If the double vision occurs frequently you need specialist help. Plastic prism lenses

3 added to glasses can improve the double vision. At a later stage if the double vision remains, surgery can be done to realign the eyes. However, if the double vision is getting worse you may need immunosuppressive treatment. Deteriorating Vision If this happens more than just occasionally and cannot be corrected by new spectacles, urgent expert attention is required as it may mean there is pressure on the nerve behind the eye. Immunosuppressive Treatment or surgery (decompression) to relieve pressure behind the eyes as soon as possible may be necessary. Changes to look out for If you notice any deterioration of your vision along with de-saturation of the colour red. For example if red traffic lights appear grayish, you must report to the accident and emergency department to be seen by an ophthalmologist (eye doctor). The changes in my face have affected me badly Can anything be done about them? Some of the effects of thyroid eye disease improve with strict medical control and the passage of time. However, in a proportion of sufferers the changes persist long term. Many can camouflage these by simple measures such as growing a fringe or wearing tinted or dark glasses, but some experience considerable difficulties as a result of the changes in their appearance. This can result in loss of self-esteem, lack of self-confidence and anger at the changes. Relationships are also affected at many different levels. All this is hardly surprising as the face and eyes are the most significant point of contact between individuals More research is needed into the psychological effects of changes in people s appearance in thyroid eye disease and also on the treatments aimed at rehabilitation. Certainly an increasing number of specialists are aware of the problems and are prepared to tackle them if there is significant disfigurement and once the disease has reached the stable uninflamed stage. The surgical plan will be tailored to meet the individual s needs but it is fair to say that the surgery is not easy and often more than one operation is needed. Concerns and Queries If you have any concerns / queries about any of the services offered by the Trust, in the first instance, please speak to the person providing your care. For Diana, Princess of Wales Hospital Alternatively you can contact the Patient Advice and Liaison Service (PALS) on (01472) or at the PALS office which is situated near the main entrance. For Scunthorpe General Hospital Alternatively you can contact the Patient Advice and Liaison Service (PALS) on (01724) or at the PALS office which is situated on C Floor. Alternatively you can nlg-tr.pals@nhs.net

4 Confidentiality Information on NHS patients is collected in a variety of ways and for a variety of reasons (e.g. providing care and treatment, managing and planning the NHS, training and educating staff, research etc.). Everyone working for the NHS has a legal duty to keep information about you confidential. Information will only ever be shared with people who have a genuine need for it (e.g. your GP or other professionals from whom you have been receiving care) or if the law requires it, for example, to notify a birth. Please be assured however that anyone who receives information from us is also under a legal duty to keep it confidential. Moving & Handling The Trust operates a Minimal Lifting Policy, which in essence means patients are only ever lifted by nursing staff in an emergency situation. Patients are always encouraged to help themselves as much as possible when mobilising, and if unable to do so, equipment may be used to assist in their safe transfer. If you have any questions regarding moving and handling of patients within the Trust, you may speak to any member of the nursing staff, the designated keyworker within the department or the Trust Moving & Handling Coordinator. Zero Tolerance - Violent, Threatening and Abusive Behaviour The Trust and its staff are committed to providing high quality care to patients within the department. However, we wish to advise all patients / visitors that the following inappropriate behaviour will not be tolerated: Swearing Threatening / abusive behaviour Verbal / physical abuse The Trust reserves the right to withdraw from treating patients whom are threatening / abusive / violent and ensuring the removal of those persons from the premises. All acts of criminal violence and aggression will be notified to the Police immediately. Risk Management Strategy The Trust welcomes comments and suggestions from patients and visitors that could help to reduce risk. Perhaps you have experienced something whilst in hospital, whilst attending as an outpatient or as a visitor and you felt at risk. Please tell a member of staff on the ward or in the department you are attending / visiting. Northern Lincolnshire and Goole Hospitals NHS Foundation Trust Diana Princess of Wales Hospital Scartho Road Grimsby Scunthorpe General Hospital Cliff Gardens Scunthorpe Goole & District Hospital Woodland Avenue Goole

5 Date of issue: April 2013 Review Period: April 2016 Author: Clinical Nurse Specialist (Ophthalmology) IFP-457 v1.2 NLGHFT 2013