Living with Autoimmune primary adrenal insufficiency
A condition (Addison's disease) in which the adrenal glands do not make enough of the hormones cortisol and aldosterone.
Understanding Autoimmune primary adrenal insufficiency
These hormones help balance water and energy in the body. Symptoms usually come on slowly. Sometimes they come on suddenly, causing an acute adrenal crisis with sudden weakness, pain, and fainting. The most common cause is an abnormal immune response. It can begin at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fatigue and weakness
- Loss of appetite and weight loss
- Belly pain
- Dark patches of skin
- Low blood pressure
- Dehydration
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, National Adrenal Diseases Foundation and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Autoimmune Association, National Adrenal Diseases Foundation, Pituitary Network Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the most common cause is an abnormal response of the immune system. Injury to the adrenal gland can also cause it.
Also known as: addison disease due to autoimmunity; addison's disease due to autoimmunity; autoimmune addison disease; autoimmune addison's disease; autoimmune adrenal atrophy; autoimmune adrenalitis
Patient organizations
- Autoimmune AssociationAutoimmune primary adrenal insufficiency · United States
- National Adrenal Diseases FoundationAutoimmune primary adrenal insufficiency · United States
- Pituitary Network AssociationAutoimmune primary adrenal insufficiency · United States
- Ben's FriendsAutoimmune primary adrenal insufficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Autoimmune primary adrenal insufficiency.
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