Addison’s Disease
The adrenal glands stop making enough cortisol, and usually aldosterone too. It creeps up slowly with vague symptoms, but it’s very treatable with daily tablets and a plan for when you’re unwell.
Quick answer: Addison’s disease means the adrenal glands don’t make enough cortisol and aldosterone, usually because of autoimmune damage. Symptoms build slowly: tiredness, weight loss, dizziness, salt craving and darker skin. It’s diagnosed with blood tests, including a Synacthen test. Lifelong hydrocortisone and fludrocortisone work well, plus a sick-day plan to prevent adrenal crisis.
How common. Rare: about 1 in 7,000 to 10,000 people in Western countries. It most often starts between 30 and 50 and is a little more common in women.
Causes. In Australia and similar countries, about 8 or 9 in 10 cases are autoimmune: the immune system damages the outer layer of the adrenal glands. People with Addison’s often have, or develop, other autoimmune conditions such as underactive thyroid, type 1 diabetes or vitiligo. Worldwide, tuberculosis is a major cause. Others include bleeding into the glands, cancer spread, some medicines and rare genetic conditions.
Not the same as. Adrenal insufficiency from long-term steroid tablets or pituitary problems (’secondary’), which is managed similarly but doesn’t affect aldosterone or skin colour. And not ’adrenal fatigue’, which isn’t a real diagnosis (see below).
Symptoms. Usually slow and vague, so it’s often missed: tiredness, weakness, low mood, poor appetite and weight loss, nausea and tummy pain, dizziness on standing from low blood pressure, salt craving, muscle and joint aches, and darker skin, especially in creases, scars, knuckles and inside the mouth. Women may lose body hair and libido.
How it’s diagnosed. Blood tests show low early-morning cortisol with a high ACTH (the pituitary hormone pushing the adrenals). The standard test is the short Synacthen test: cortisol fails to rise properly after an injection of synthetic ACTH. Low sodium, high potassium and high renin are common. Adrenal antibodies confirm an autoimmune cause; if negative, a CT scan of the adrenals is usually done. If someone is very unwell, treatment shouldn’t wait for test results.
Treatment
Replacing the missing hormones lets most people live normally. Doses are set by your endocrinologist, following the Endocrine Society guideline.
- Daily · PrescriptionHydrocortisone (cortisol replacement)Usually 15 to 25 mg a day split into 2 or 3 doses, largest on waking. Prednisolone once daily is an alternative for some.
- Works
- Restores energy and wellbeing, and is life-saving
- Access
- PBS-subsidised
- Watch for
- Too much over years can cause weight gain and thin bones, so the lowest dose that keeps you well is the goal.
- Daily · PrescriptionFludrocortisone (aldosterone replacement)Usually 50 to 100 micrograms once daily. Helps the body keep salt and maintain blood pressure.
- Works
- Corrects salt craving, dizziness and low blood pressure
- Access
- PBS-subsidised
- Watch for
- Ankle swelling or high blood pressure means the dose may be too high.
- Always · PlanA sick-day and emergency planYour doctor will give you a written plan saying when and how to increase your dose, for example with a fever or vomiting, and an emergency hydrocortisone injection kit with training for you and family.
- Works
- Prevents most adrenal crises
- Access
- From your endocrinologist or GP
- Watch for
- Wear a medical alert bracelet and carry a steroid emergency card.
Save your money
Popular, heavily marketed or often asked about, but the evidence is weak or says no.
- ’Adrenal fatigue’ tests and supplements’Adrenal fatigue’ isn’t a recognised medical condition, and saliva cortisol panels and ’adrenal support’ supplements sold for it have no good evidence. Some contain hidden steroids. Real adrenal failure, Addison’s, shows up on proper blood tests.
Living with it
- Never stop or skip steroid tablets; take them at the same times each day.
- Follow the sick-day plan your doctor gives you, and keep spare tablets when travelling.
- Keep your emergency injection kit in date and show family or friends how to use it.
- Tell every doctor, dentist and hospital team; you’ll need extra steroid cover for surgery, labour and some procedures.
- Have yearly check-ups, including thyroid and blood sugar, and a bone density scan if advised.
- Vaccinations, including flu, help prevent illnesses that can trigger a crisis.
See your GP if
- You’re tired, losing weight and dizzy on standing for weeks, especially with salt craving or darker skin
- You have another autoimmune condition and new, unexplained tiredness or tummy symptoms
- You have Addison’s and are frequently unwell, or unsure how to adjust your dose
- You’ve stopped long-term steroid tablets and feel unwell (don’t stop them suddenly)
Adrenal crisis is an emergency. If you have Addison’s and are vomiting, can’t keep tablets down, have severe tummy pain, are very drowsy or confused, or collapse: use your emergency hydrocortisone injection as you’ve been shown, then call 000 (Australia) or your local emergency number. Say you have adrenal insufficiency.
Outlook. With replacement and a good sick-day plan, most people with Addison’s live full, active lives and have children. Adrenal crises still happen, roughly once every 10 to 20 years per person on average, so knowing your plan matters. Addison’s Disease Day is on 29 May: see our health days calendar. In Australia, Rare Voices Australia supports the nearly 2 million Australians living with a rare disease.
Common questions
What are the early signs of Addison’s disease?
Tiredness, weakness, poor appetite and weight loss, dizziness on standing, salt craving and darkening skin, especially in creases, scars and gums. They build slowly over months.
What is an adrenal crisis?
A life-threatening drop in cortisol, often triggered by illness, vomiting or missed tablets. Signs include vomiting, severe tummy pain, confusion, very low blood pressure and collapse. It needs an emergency hydrocortisone injection and an ambulance.
What are sick day rules for Addison’s disease?
Your doctor will give you a personal plan, usually to increase your hydrocortisone dose during a fever or illness and to use your emergency injection if you’re vomiting. Follow your own plan rather than general rules.
Is Addison’s disease the same as adrenal fatigue?
No. Addison’s is a real, measurable failure of the adrenal glands. ’Adrenal fatigue’ isn’t a recognised medical condition and has no reliable test.
Can you live a normal life with Addison’s disease?
Yes. With daily hormone replacement and a sick-day plan, most people work, exercise, travel and have children normally.
What test diagnoses Addison’s disease?
The short Synacthen test, which checks whether cortisol rises after an injection of synthetic ACTH, plus morning cortisol and ACTH blood tests.
Why does Addison’s disease cause dark skin?
Low cortisol makes the pituitary release more ACTH, which comes from the same precursor as the hormone that stimulates skin pigment, so skin darkens.
Evidence and more information
- Bornstein et al, Endocrine Society 2016: Diagnosis and treatment of primary adrenal insufficiency
- Arlt et al, Endocrine Connections 2016: Society for Endocrinology emergency guidance on acute adrenal insufficiency
- healthdirect: Addison’s disease
- NHS: Addison’s disease
maladywise.com/addisons-disease/