Objective
Dissatisfaction with treatment and impaired quality of life (QOL) are reported among people with treated hypothyroidism. We aimed to gain insight into this.
Design and patients
We conducted an online survey of individuals with self‐reported hypothyroidism.
Results
Nine hundred sixty‐nine responses were analysed. Dissatisfaction with treatment was common (77.6%), and overall QOL scores were low. Patient satisfaction did not correlate with type of thyroid hormone treatment, but treatment with combination levothyroxine (L‐T4) and liothyronine (L‐T3) or with desiccated thyroid extract (DTE) was associated with significantly better reported QOL than L‐T4 or L‐T3 monotherapies (P < .001); however, multivariate analysis inclusive of other clinical parameters failed to confirm an association between type of thyroid hormone treatment and QOL or satisfaction. Multivariate analysis showed positive correlations between satisfaction and age (P = .026), male gender (P = .011), being under the care of a thyroid specialist (P < .001), family doctor (GP) prescribing DTE or L‐T4 + L‐T3 or L‐T3 (P < .001) and being well informed about hypothyroidism (P < .001); negative correlations were observed between satisfaction and negative experiences with L‐T4 (P < .001) and expectations for more support from the GP (P < .001), for L‐T4 to resolve all symptoms (P = .004), and to be referred to a thyroid specialist (P < .001). For QOL, positive correlations were with male gender (P = .011) and duration of hypothyroidism (P = .002); negative correlations were with age (P = .027), visiting the GP more than 3 times before diagnosis (P < .001), sourcing DTE or L‐T3 independently (P = .014), negative experiences with L‐T4 (P = .013), having expectations for L‐T4 to resolve all symptoms (P < .001) and of more support from the GP (P = .006).
Conclusions
Multiple parameters including prior healthcare experiences and expectations influence satisfaction with hypothyroidism treatment and QOL. Focusing on enhancing the patient experience and clarifying expectations at diagnosis may improve satisfaction and QOL.