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This study aimed to explore the perspectives of TED patients regarding the referral pathway and their experiences within secondary care.An anonymous online survey, featuring a consent section and 19 questions, was distributed through two TED charity Facebook groups during May and August 2023. Participants were eligible if they had a confirmed diagnosis of TED and were residing in the UK.The survey was completed by 144 adults, 129 of whom met the inclusion criteria. Symptomatic individuals most commonly first consulted their GP (42%), optometrist (25%), or endocrinologist (25%). This resulted in an ophthalmology referral for 90% of those visiting an endocrinologist, 42% visiting an GP, and 36% visiting an optometrist. Respondents commonly reported being given the wrong diagnosis by their GP (37%), or optometrist (45%). The most common complaints were proptosis (66%), sore eyes (64%), and diplopia (63%). Forty percent of respondents were seen in ophthalmology within 3 months, 66% within 6 months, and 88% within a year (median time 4–6 months). For 71%, symptoms worsened while trying to secure a referral, and 61% volunteered that their confidence had been affected. Thirty-one percent attended specialist TED clinics, which were rated more highly than orthoptic and ophthalmology or ophthalmologist only clinics (p=0.025). Respondents’ referral journeys differed considerably. Multiple consultations in primary care were often required before a referral was made, highlighting deficiencies in identification of TED within primary care and unclear referral pathways. The survey revealed opportunities for improvement in TED understanding, detection, clearer referral pathways, and optimised management