Call for timely prevention in thyroid eye disease: lessons from the IrTED registry

Background This study aims to determine factors contributing to the delayed identification and treatment of thyroid eye disease (TED) and ultimately provide recommendations for earlier identification of patients in need of care. Methods Retrospective cross-sectional data from patients in the Iranian TED (IrTED) registry, presented to Rassoul Akram Hospital, Tehran (March 2013–2023), were studied. Demographics, clinical indices of activity and severity and factors associated with delayed presentation were examined. Results Among 685 patients with TED, the mean diagnosis age was 37.79 years. A positive family history of thyroid dysfunction was reported by 37.66% (first-degree), 10.65% (second-degree) and 10.07% (both). According to the European Group on Graves’ Orbitopathy criteria, 56.49% had moderate-to-severe, 38.10% had mild, and 5.40% had sight-threatening TED. 59 patients were classified as active due to the recent onset of diplopia or proptosis, despite having an activity score of 1 or 2. Men were five times more likely to have active TED than women and 10-fold more likely to have sight-threatening TED. For every one-decade increase in age, the odds of having active TED and experiencing sight-threatening TED rise by approximately 72% and 96%, respectively. Conclusion Given the potential for targeted interventions such as smoking cessation, identifying high-risk relatives of thyroid dysfunction cases could help minimise disease progression and associated complications (primary prevention). Men and elderly patients are more likely to experience delayed diagnosis, leading to more severe presentations of TED (secondary prevention). Approximately one-fourth of patients had active TED, requiring anti-inflammatory treatment. However, the Clinical Activity Score threshold of 3 did not detect 34.91% of these active cases (tertiary prevention). All data relevant to the study are included in the article or uploaded as supplementary information.