Pippa Sharman
Digital Communications and Engagement Officer, Addison’s Disease Self-Help Group (ADSHG)
addisonsdisease.org.uk | @AddisonsUK
Charity no.1179825
Subtle symptoms like fatigue and light headedness are non-specific but they could be clues to diagnosing Addison’s disease, a life-threatening rare disease.
Undiagnosed, they go through most days almost giddy from light-headedness, sluggish, a dense fog rolling over mind and muscle. Despite an all year round tan, they feel anything but healthy. Reaching for another salty snack, feeding the urge to keep going, they think – when did “functioning” become so hard? Stop – think Addison’s disease. The initial symptoms of Addison’s are non-specific and can fit other conditions. Individually each symptom may be discounted or explained away, whilst the person remains undiagnosed.
Understanding the symptoms
Profound fatigue, increased skin pigmentation, muscle cramps, craving salt and unintentional weight loss,1 are all symptoms of Addison’s disease. These symptoms require medical attention to prevent a delayed diagnosis. Difficulty in diagnosis continues as individuals may not have all the symptoms outlined; everyone has a different mix. A delayed diagnosis may lead to a life-threatening adrenal crisis. Danger signs include low blood pressure, nausea, vomiting, extreme tiredness, drowsiness or confusion and stomach pain.
Adrenal crisis
People still die of adrenal crisis, which is entirely preventable. Healthcare professionals need to think of Addison’s and recognise it earlier so that a diagnosis can be made before a crisis develops.
So see the rare reality, when a friend sits down in front of you, tired in a way no amount of sleep will fix – think Addison’s.
People known to have Addison’s should carry the Steroid Emergency Card to prompt healthcare professionals to carry out life-saving treatment in an adrenal crisis. The Addison’s Disease Self-Help Group (ADSHG) charity website includes educational resources for healthcare professionals, linking to national guidance.2,3
Importance of diagnosis
Diagnosis is highlighted in the UK Rare Disease Framework, showing that whilst each rare disease is unique, the commonality of experience is great. With over 7,000 rare diseases, it can be challenging for healthcare professionals to match the symptoms of Addison’s to the person before them. So see the rare reality, when a friend sits down in front of you, tired in a way no amount of sleep will fix – think Addison’s. When a patient takes a seat at your GP surgery week after week looking unusually tanned – think Addison’s.
Assess for the symptoms described and in the case of Addison’s or adrenal insufficiency, check with a morning cortisol blood test.
Even with the fast-paced nature of daily life, overwhelming fatigue and the symptoms outlined here are not normal – diagnosing early can prevent a life-threatening adrenal crisis. Think Addison’s disease.
@SimbaComics
The Addison’s Disease Self-Help Group (ADSHG) is the UK and Ireland charity for people with Addison’s disease and adrenal insufficiency. Addison’s is a rare endocrine disease affecting adrenal gland function and can be life threatening. The ADSHG provides emotional and practical support, funds vital research and promotes better medical understanding.
Connect with Addison’s Disease Self-Help Group (ADSHG)
Charity no.1179825
References
1: Husebye E. Pearce S. Krone L. Kämpe O. Adrenal insufficiency. Lancet. 2021 DOI: https://doi.org/10.1016/S0140-6736(21)00136-7
2: Simpson H. Tomlinson J. Wass J. Dean J. Arlt W. Guidance for the prevention and emergency management of adult patients with adrenal insufficiency. Clinical Medicine. 2020. DOI: https://doi.org/10.7861/clinmed.2019-0324
3:Society for Endocrinology Adrenal Crisis Resources
