Context: With advances in the treatment of congenital hypothyroidism (CH), the neuropsychological functioning of CH patients is considerably improved. Although much is written about cognitive and motor development, little is known about emotional and social consequences for patients growing up with CH, diagnosed by neonatal screening.

Objective: The objectives of the study were: (1) to compare health related quality of life (HRQoL), developmental milestones also called course of life (CoL), socio-demographic outcomes and self-esteem of CH patients with the general population; and (2) to explore whether severity of CH was related to these outcomes.

Design/Setting/Patients: A total of 69 young adults with CH, born in The Netherlands in 1981–1982, completed the TAAQoL questionnaire (TNO-AZL Questionnaire for Adult's Health related Quality of Life'), the CoL survey (developmental milestones and socio-demographic outcomes) and a self-esteem questionnaire.

Main Outcome Measures: HRQoL, CoL, social demographic outcomes and self-esteem in young adults with CH.

Results: CH patients are more often at risk for HRQoL impairment and reported lower HRQoL on several domains (cognitive functioning, P < 0.0001; sleeping, P < 0.004; pain, P < 0.0001; daily activities, P < 0.004; vitality, P < 0.0001; aggressiveness, P < 0.0001 depressive moods, P < 0.0001) compared to healthy adults. Patients reported a lower self-esteem, P < 0.005 and had a delayed course of life on the domains of social development (P < 0.016). There were no significant within-group differences between the severity groups for HRQoL, CoL and self-esteem.

Conclusions: Negative consequences in terms of HRQoL, development and self-esteem are prevalent in young adults with CH. Health care physicians should to be attentive to these consequences and provide additional support (emotional and educational guidance) if necessary.