Patients with suspected dysthyroid eye disease, they should be referred to the joint thyroid eye clinic via Dr Justine McKee at PAEP. They will receive both ophthalmic and endocrine follow-up at this clinic. However, if the patient also requires endocrine input, please send a duplicate referral to RIE endocrinology selecting the ‘Advice only’ option and marking the referral for the attention of Dr Anna Dover or Dr Nicola Zammitt. Patients in West Lothian should be referred to Dr Jan Kerr in ophthalmology.
Prior to referral, please ensure that the patient has up to date TFTs (TSH, FT4 and TT3) – within the last 6 weeks at least and TRAb Antibodies within the last 6 months, indicating the suspicion of thyroid eye disease on the request. Patients may have Graves’ eye disease despite being hypothyroid or even euthyroid. The referral can be made while the results are pending.
Please also ensure that patients:
- are advised about smoking cessation
- are given advice to commence OTC selenium (200 micrograms daily) whilst awaiting review (see Thyroid eye disease PIL)
- are prescribed topical lubricants, tears to both eyes qds prn and ointment at night.
ASSESSING DISEASE ACTIVITY.
An assessment of the patient’s disease activity and severity will help determine how urgently they should be seen.
CLINICAL ACTIVITY SCORE (Mourits Score):
- Spontaneous retrobulbar pain
- Pain on attempted up or down gaze
- Lid swelling
- Lid redness
- Conjunctival chemosis
- Conjunctival swelling
- Caruncular swelling.
One point for each feature present. A score of >3/7 indicates active Graves’ Ophthalmopathy (GO) with higher scores indicating more severe disease.
A separate picture guide is also available to assist in assessing clinical activity,
Three other features may indicate active disease.
In the last 3 months:
- Increase in proptosis of ≥ 2mm
- Decrease in VA (≥ 1 Snellen line)
- Increase in diplopia (decrease in uni-ocular excursion in any one direction of ≥ 8°).
ASSESSMENT OF SEVERITY
Severity classification:
1. Sight threatening GO: patients with dysthyroid optic neuropathy (DON) and/or corneal breakdown. This category warrants immediate intervention.
2. Moderate to severe GO: patients without sight threatening GO whose eye disease has sufficient impact on daily life to justify the risks of immunosuppression (if active) or surgical intervention (if inactive).
Patients with moderate to severe GO usually have any one or more of the following: lid retraction >2mm, moderate or severe soft tissue involvement, exophthalmos >3mm above normal for race and gender, inconstant or constant diplopia.
3. Mild GO: patients whose features of GO have only a minor impact on daily life insufficient to justify immunosuppressive or surgical treatment. They usually only have one or more of the following: minor lid retraction (>2mm), mild soft tissue involvement, exophthalmos >3mm above normal for race and gender, transient or no diplopia, corneal exposure responsive to lubricants.
CM & NZ 29/09/25
HOW SOON SHOULD PATIENTS BE SEEN?
- URGENT – 1-2 weeks
Symptoms:
- Unexplained drop in vision
- Awareness of change in intensity or quality of colour vision in one or both eyes
- History of one or both eyes popping out (globe subluxation)
Signs:
- Obvious corneal opacity
- Cornea still visible when the eyelids are closed
- Optic disc swelling.
- NON – URGENT 1–2 months
Unusual presentations of Graves’ eye disease to confirm diagnosis eg. unilateral symptoms and signs, euthyroid eye disease.
Symptoms:
- Eyes abnormally sensitive to light: troublesome or deteriorating over the past 1–2 months
- Eyes excessively gritty and not improving after 1 week of topical lubricants
- Pain in or behind the eyes: troublesome or deteriorating over the past 1–2 months
- Progressive change in appearance of the eyes or eyelids over the past 1–2 months
- Appearance of the eyes has changed causing concern to the patient
- Seeing two separate images when there should only be one.
Signs:
- Troublesome eyelid retraction
- Abnormal swelling and/or redness of the eyelids or conjunctiva
- Restriction of eye movements or manifest strabismus
- Tilting head to avoid double vision
- No referral is needed for Graves’ Disease with minimal eye symptoms or signs.
How to refer
See introduction above.
Picture guide to clinical activity in Thyroid Eye Disease
British Thyroid Foundation PILs
Patient information on thyroid eye disease can also be found on the Thyroid Eye Disease Charitable Trust (TED-CT) website