Referral Thresholds and Activity/Severity Scoring

Determining when to refer patients with thyroid eye disease to ophthalmology is a key component of shared care. In this segment, Andrea Kossler, MD, emphasizes that it is rarely “wrong” to involve an eye specialist and that referral thresholds should be individualized based on clinician experience and patient symptoms. For individuals with only minimal, stable complaints, she may defer immediate ophthalmology referral but instructs them to notify all eye care providers of their Graves disease diagnosis.

As symptoms progress or new signs emerge—such as lid retraction, proptosis, scleral injection, or worsening tearing—Andrea Kossler, MD, moves quickly to coordinate care with ophthalmology or oculoplastic surgery. She likens this collaborative model to the routine ophthalmic surveillance employed in diabetes, positioning TED follow-up as a similarly critical element of chronic disease management. The goal is to ensure that changes in optic nerve status, corneal integrity, or orbital anatomy are detected promptly.

Dr Kossler also reflects on her evolving use of activity scoring systems, such as the Clinical Activity Score (CAS). Earlier in her experience, she tended to reserve advanced therapies for patients with CAS of 4 or greater, in line with prior guideline thresholds. Over time, however, she has placed greater weight on the patient’s perceived disease burden and quality of life. In her current practice, a significant subjective impact may constitute an indication for treatment even in the setting of lower activity scores, underscoring a more patient-centered approach.

In this section, Andrea Kossler, MD, articulates a low threshold for ophthalmology referral in patients with thyroid eye disease, noting that co-management is generally beneficial. She acknowledges that primary care clinicians and endocrinologists may reasonably continue to monitor patients with very mild, stable symptoms, provided that patients are instructed to inform all eye care professionals of their underlying thyroid disease. This ensures that optometrists, ophthalmologists, and oculoplastic surgeons remain alert to potential TED progression.

Referral becomes imperative when patients demonstrate worsening symptoms or objective findings such as lid retraction, proptosis, conjunctival injection, or increased tearing. At that juncture, Dr Kossler typically initiates or escalates systemic therapy while coordinating a dedicated ophthalmologic evaluation. This model mirrors multidisciplinary care frameworks in other chronic conditions (eg, diabetes mellitus), in which coordinated endocrine and ophthalmologic oversight is standard of care.

With regard to activity and severity scoring, Dr Kossler describes an evolution from strict adherence to threshold-based criteria (eg, Clinical Activity Score ≥4) toward a more nuanced, quality-of-life–centered paradigm. Although activity scores remain important for standardization and trial eligibility, she now considers a high symptomatic burden and functional impairment as sufficient justification for advanced interventions, even when formal scores are modest. This shift highlights the importance of integrating patient-reported outcomes into treatment decision-making in TED.