Primary adrenal insufficiency is a relatively rare endocrine condition requiring life-long glucocorticoid and mineralcorticoid replacement therapy. Unlike other endocrine conditions – such as diabetes – complications associated with early mortality are unusual and well-medicated patients can expect to have a normal life span. Nevertheless, patients typically report a variety of symptoms which reduce their quality of life.

Data from an international survey conducted in 2003 across the UK, Canada, Australia and New Zealand (N = 851) , shows that primary adrenal insufficiency patients consistently report ongoing symptoms typically associated with steroid insufficiency. For example, nearly two-thirds experience fatigue regularly or almost always. One-quarter experience salt cravings and muscle weakness this frequently. Nearly one in five reported ongoing hyper pigmentation and 11% ongoing nausea. One-third said their condition affected their ability to participate in social activities.

Despite this, a significant proportion of patients appear to be mildly over-medicated. We derived Body Surface Area for survey respondents taking hydrocortisone and identified a mean dose of 13.9mg per metre squared for men, and a mean dose of 14.3mg per metre squared for women, where an ideal dose would be 10 – 12mg per metre squared per day.

Responses from primary adrenal patients were compared to those of a matched control group (N = 596), who consistently reported fewer symptoms as well as greater participation rates in paid employment and recreational activities. For example, 10% of those with hypoadrenalism reported they were unable to work through disability or illness, compared to 1% of the matched control group.

This is the largest adrenal insufficiency patient survey to date and shows significant morbidity compared to carefully matched controls. These symptoms need attention and may be treatable using modern methods of hormone replacement.

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