Endocrine Abstracts

Steroid-dependence is a life-long condition with a risk of premature mortality from undertreated adrenal crisis or omission of steroids. Previous studies identified rates of adrenal crisis around 8.3/100 patient years (Hahner 2015). We invited members of Addison’s Disease Self-Help Group to complete an online questionnaire about any experiences of adrenal crisis. Respondents(N=628) were asked to provide demographic information and details of their most recent adr...

Addison’s disease (AD) has an estimated prevalence of 126–144 per million among Northern European populations. Average age at diagnosis is 39, but AD may be diagnosed from pre-teens to 80 year olds.AD may occur in isolation or as part of autoimmune polyendocrine syndromes. Previous studies identified significant associations with autoimmune thyroid disease (predominantly hypothyroidism), type 1 diabetes mellitis, vitiligo, vitamin B12 deficienc...

Addison’s disease (AD) has an estimated prevalence of 126–144 per million among Northern European populations. Average age at diagnosis is 39, but AD may be diagnosed from pre-teens to 80 year olds.AD may occur in isolation or as part of autoimmune polyendocrine syndromes. Previous studies identified significant associations with autoimmune thyroid disease (predominantly hypothyroidism), type 1 diabetes mellitis, vitiligo, vitamin B12 deficienc...

Good clinical practice encourages patients to minimise long-term glucocorticoid overexposure to preserve bone density and prevent the development of glucose intolerance or hyperlipidaemia. However, the absence of a protective “cushion” of excess cortisol implies an increased risk of adrenal crisis. (White & Arlt 2010) This assumption has been challenged by a leading adrenal specialist, who suggested instead that chronic over-replacement may increase the susceptib...

Steroid-dependent patients have a lifelong dependency on replacement therapy and a lifelong vulnerability to sudden death from under treated adrenal crisis. Yet evidence about the adequacy of medical response to adrenal crisis within the UK is largely anecdotal.We invited members of the main UK support groups representing steroid-dependent patients to complete an online questionnaire identifying the frequency, causes and location of their adrenal crises ...

Steroid-dependence is a life-long condition with a risk of premature mortality from undertreated adrenal crisis, hospital omission of steroids, or running out of maintenance drugs at home. We invited members of the main UK support groups representing steroid-dependent patients to complete an online questionnaire about their experiences of adrenal crisis. Respondents (n=1042) were asked to provide demographic information that explored predisposing factors, including co...

In early 2010, the Addison’s Disease Self-Help Group sent an information pack to 10 500 GP practices across the UK, outlining the GP’s role in diagnosis and care of the Addison’s patient. We asked the practice head to return a reply-paid questionnaire, detailing the number of steroid-dependent patients in the practice, their repeat prescription length, if they had an in-date supply of injectable hydrocortisone, and any comments on the challenges they faced in pr...

Impaired quality of life in patients with treated Addison’s (primary adrenal insufficiency) has been identified in several recent studies, which have also identified high rates of working-age disability. However, causation in patients whose replacement endocrine medications appear adequate remains unclear.To try and identify factors influencing this reduced quality of life, we analysed demographic information reported by a UK patient sample (n</i...

We examined online questionnaire responses received Dec 2017 – Jan 2018 from a sample of well-informed adrenal patients belonging to the Addison’s Disease Self-Help Group (N=374). ADSHG members reported levels of preparedness to self-manage during adrenal emergencies that were strikingly higher than any UK clinic survey.• 88% reported wearing medical jewellery• 80% had an in-date injection kit with them at the t...

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 Addison’s Disease S...