Recent epidemiological studies of primary adrenal insufficiency (Addison's disease) in Scandinavia have identified an average age at diagnosis of less than 40 (Bergthorsdottir 2006 n=1675, Erichsen 2009 n=426). They also found a broader range of ages than earlier UK studies, which had suggested that the majority of diagnoses occur in the third to fifth decades of life (Kong 1994, n=86). We analysed all membership records for the UK Addisons Disease Self-Help Group (ADSHG), to identify 1678 cases where patients had registered their age at diagnosis. The average age at diagnosis for past and present members, including those now deceased, was 39.1. The average age at diagnosis for members now deceased was 60.8 (n=36). Importantly, this analysis confirmed the spread of ages at diagnosis (385 years), so that just 50.2% of diagnoses were 3049 years, with 26% diagnosed before 30 and 24% diagnosed aged 50 or more. This gave a Standard Deviation of 15.0. (Bergthorsdottir 2006, SD 15.5). The oldest living member of the group, aged 90, was diagnosed 10 years earlier, aged 80. The four next oldest living members, all aged 87, were diagnosed between 8 and 44 years previously, aged 4379. The five longest-diagnosed members were diagnosed 5964 years previously, between the ages of 11 and 23; they are now between 75 and 83 years old. This data relies on self-reporting by patients. A previous ADSHG survey (White 2005, n=850) and anecdotal reports from members confirm that most have primary, autoimmune disease while a minority are steroid-dependent due to secondary suppression, surgical removal of the adrenals, adrenal haemorrhage, infection or other causes. The range of ages at diagnosis with adrenal insufficiency has important implications for GPs and endocrinologists, especially regarding screening in older patients.
Declaration of interest: There is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.
Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.