Appendix 3 .uk



LEEDS TEACHING HOSPITALS TRUST

eClinical Guidelines Template

|TITLE Referral, Assessment and Treatment of Thyroid Eye Disease (TED) |

|Guideline Detail |

|Publication date: July 2014 |

|Next Review date: August 2023 |

|Status: CURRENT |

|Contents |

|Background |

|Diagnosis |

|Establishing a diagnosis |

|Differential diagnosis |

|Assessing clinical activity |

|Assessing Severity |

|When to refer to Joint Thyroid-eye disease clinic |

|Urgent referral |

|Routine referral |

|Investigations |

|Treatment and Management |

|General principles algorithm |

|Mild disease |

|Moderate and severe disease |

|Radiotherapy |

|Surgical intervention |

|Systemic immune suppressants and Biologics |

|Summary of Guideline |

|Please ensure that you include a summary which may include the following: |

|Patients with all but the mildest of thyroid eye (TED) disease benefit from being managed in a joint endocrine/eye clinic. |

|Patients can present with a variety of symptoms and signs ranging from swelling of the soft tissues around the eyes to ocular |

|surface discomfort, diplopia and orbital pain. |

|The degree of activity of a patient’s thyroid eye disease is determined by the clinical activity score (CAS). Patients scoring 3 or|

|above are generally deemed to be active. The severity of the eye disease can then be classified on the basis of lid retraction, |

|exophthalmos, soft tissue signs around the eye, corneal involvement and diplopia. Rarely patients may be at risk of sight loss, |

|principally from dysthyroid optic neuropathy or corneal exposure. |

|Treatment and management of the disease is aimed at controlling the active inflammatory phase before dealing with the long term |

|sequelae of the disease such as lid malposition and strabismus. Steroids form the mainstay of treatment of the active inflammatory |

|component although radiotherapy and surgery may be useful adjuncts. Novel therapies including anti TNFα and monoclonal antibody |

|agents remain promising but lack a proven evidence base at present. |

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|Aims |

|To improve the diagnosis and management of Thyroid Eye Disease (TED) |

|Objectives |

|To provide evidence-based recommendations for appropriate diagnosis, investigation and management of Thyroid Eye Disease |

|Background |

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|Glossary of terms |

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|TED: Thyroid eye disease |

|DON: Dysthyroid optic neuropathy |

|GO: Graves ophthalmopathy/orbitopathy |

|PPI: Proton pump inhibitor |

|CAS: Clinical activity score |

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|Thyroid-eye disease, or dysthyroid-associated orbitopathy is a disease of the eyes and surrounding soft tissues. |

|It is an autoimmune inflammatory disorder affecting the tissues within the eye socket, characterised by pain, swelling, redness, |

|watering, retraction of the upper eyelids, conjunctivitis, bulging eyes, double vision and, in rare circumstances, decreased |

|vision. |

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|Thyroid-eye disease may occur before or after the onset of overt thyroid disease, and can start suddenly or more slowly. The yearly|

|incidence is 16/100,000 in women, 3/100,000 in men, and the disease is more frequent in smokers. |

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|Although patients may undergo spontaneous remission of symptoms within a year, many still need treatment. The first step of |

|treatment aims to regulate thyroid hormone levels and a block and replace regime is often used for this. It is imperative that |

|patients cease smoking. Topical treatments such as lubricating eye drops can be used to alleviate symptoms in very mild disease. |

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|In more active disease, signs or symptoms increase. In most cases steroids are effective but are used conservatively because of |

|their side effects. In severe cases the vision may be threatened due to optic nerve compression or corneal ulceration related to |

|lagophthalmos and exposure. About 3-5 % of patients have severe disease which may need treatment urgently with high dose |

|intravenous steroids and/or surgery for refractory cases. |

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|Management of the active stage of the disease may take several years. Following this, patients may be left with numerous sequelae |

|including double vision, protruding eyes, eye bags and lid retraction. Many of these aspects of the patient’s appearance are |

|amenable to surgery but this is undertaken in a step-wise process and again may take a long time to complete. |

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|Thyroid-eye disease is a rare but treatable disease that causes a significant decrease in quality of life. In all but the very |

|mildest of cases patients benefit from a multi-disciplinary approach and should be managed in specialised clinics with endocrine, |

|ophthalmic and orthoptic expertise. It is hoped that this document will improve the referral of patients into our joint clinics so |

|that patient’s treatment and outcomes can be optimised and unnecessary follow-up minimised. |

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|Diagnosis |

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|Establishing a diagnosis and assessing the activity of thyroid eye disease |

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|Patients with thyroid eye disease may present with any number of the signs and symptoms outlined below: |

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|Redness of the eyelids and conjunctivae |

|Swelling of the lids |

|Swelling of the conjunctivae (chemosis) |

|Swelling of the carruncle (the fleshy lump of tissue at the nasal aspect of the eyelids) |

|Lid retraction and scleral show |

|Signs of corneal exposure |

|Puffy eyelids |

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|Eye pain at rest |

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|Pain on eye movements |

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|Double vision |

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|Itchy / Burning / Stinging eyes |

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|Other conditions that may present in a similar fashion should form part of your differential diagnosis: |

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|Allergic Conjunctivitis |

|Myasthenia Gravis |

|Orbital mass |

|Orbital Pseudotumour |

|Carotico-cavernous fistula |

|Orbital Myositis |

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|Once a diagnosis of thyroid-eye disease has been established then a rational approach to treatment should be pursued. The first |

|stage is to establish the degree of inflammatory activity using the clinical activity score outlined below: |

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|Components of the clinical activity score |

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|Spontaneous retrobulbar pain |

|Pain with eye movement |

|Redness of the eyelids |

|Redness of the conjunctiva |

|Swelling of the eyelids |

|Swelling of the caruncle |

|Conjunctival oedema (chemosis) |

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|A score is given out of 7 with each component scoring 1 point |

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|The severity of disease can then be assessed using the following algorithm: |

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|Features of Mild and Moderate-to-Severe Graves’ Ophthalmopathy |

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|Mild |

|Moderate-to-severe |

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|Characteristic |

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|Eyelid retraction (mm) |

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