Addisons disease is notoriously difficult to diagnose and has been labelled the master of unforgiving disguise. In the largest international survey of autoimmune Addisons disease to date (N=613), we asked patients to recall their symptoms at diagnosis. The results confirm the challenges of diagnosis, in that no patients recalled all the standard symptoms.
Hyperpigmentation with dizziness on standing/blackouts and weight loss, which in an extremely ill patient are often the most revealing indicators of autoimmune hypoadrenalism, were only recalled by 7986% of respondents. Only three-quarters recalled a loss of appetite or nausea, while just over half recalled salt cravings, vomiting or difficulty in concentrating.
Only one patient recalled blue gums, suggesting that most patients are diagnosed in less advanced stages of the disease than was the case historically. Only three patients (0.5%) recalled that they were in or near a coma, suggesting that fewer patients die from undiagnosed hypoadrenalism than would have been the case historically.
62% said their symptoms had been attributed to other conditions prior to diagnosis and 33% said they had been told by a medical professional that their symptoms were all psychological. 31% said they had been ill for more than 12 months prior to diagnosis. Around half said it took more than 3 months to recover their health after diagnosis. Indicative of the non-specific but severe nature of the illness, 40% said they had received hospital treatment for their Addisons symptoms prior to diagnosis; 9% had been hospitalised three times or more prior to diagnosis.
These findings, drawn from the largest international survey of Addisons disease to date, suggest that hypoadrenalism cannot be excluded from a differential diagnosis without laboratory tests and that medical professionals must remain open to the possibility of Addisons disease even where hyperpigmentation is absent.