Addison disease awareness

Overview

Addison disease is a rare condition where your adrenal glands, small organs on top of your kidneys, do not produce enough of certain hormones, especially cortisol and aldosterone. These hormones help your body respond to stress, control blood pressure, and balance salt and water.

No, Addison disease is rare. It affects about 1 in 100,000 people in the UK and other developed countries.

It can affect people of any age, gender, or ethnicity, but it is most often diagnosed in adults between 30 and 50 years old.

Symptoms

Common symptoms

• Extreme tiredness (fatigue)
• Weight loss and loss of appetite
• Low blood pressure (you might feel dizzy when standing up)
• Darkening of the skin (especially on scars, elbows, knees, and inside the mouth)
• Craving salty foods
• Nausea, vomiting, or diarrhoea
• Muscle or joint pain

Symptoms in children

• Poor growth or slow weight gain
• Frequent vomiting
• Low blood sugar (hypoglycaemia) – can cause shakiness or drowsiness
• Dark patches on the skin

Symptoms in older adults

• Symptoms may be mistaken for aging or other illnesses
• More severe fatigue and muscle weakness
• Confusion or slower thinking
• Increased risk of falls due to low blood pressure

Causes

Main causes

• The most common cause is an autoimmune reaction – the body's immune system attacks and damages the adrenal glands.
• Tuberculosis (TB) can destroy the adrenal glands, especially in some parts of the world.
• Other causes include infections, cancer that spreads to the adrenal glands, or bleeding into the adrenal glands.

Risk factors

• Having an autoimmune condition, such as type 1 diabetes or Hashimoto's disease
• Family history of autoimmune diseases
• Being of Caucasian descent (though it occurs in all ethnic groups)
• Certain infections like TB or HIV

When to see a doctor

See a doctor urgently if:

• If you have symptoms of an Addisonian crisis (see emergency section) – call your local emergency number immediately.
• If you have known Addison disease and cannot take your medication due to vomiting or diarrhoea.

Book a routine appointment if:

• If you have ongoing fatigue, weight loss, skin darkening, or dizziness when standing up – make an appointment with a general practitioner (GP).
• If you have been diagnosed and your symptoms change or worsen despite treatment.

Diagnosis

Your doctor will start with a medical history and physical exam. They will look for signs like low blood pressure, skin darkening, and weight loss. Blood tests are used to check hormone levels.

Tests that may be done

• Blood test for cortisol and adrenocorticotropic hormone (ACTH)
• Short ACTH stimulation test: your doctor gives you a tiny dose of ACTH and measures how your adrenal glands respond
• Blood tests for sodium, potassium, and glucose
• Imaging like CT scan of your adrenal glands (to check for damage or infection)

What to expect at your appointment

The diagnosis usually involves a short hospital visit or a day clinic. The ACTH stimulation test takes about an hour. You may need to fast before some blood tests. Your doctor will explain each step.

Treatment

Addison disease is treated with hormone replacement therapy – you take medicines every day to replace the hormones your body no longer makes. Treatment is lifelong and helps you live a normal life.

Self-care at home

• Always carry your medicines and a medical alert card or bracelet that says you have Addison disease.
• If you become ill (like a fever, infection, or vomiting), you may need to temporarily increase your medicine dose – your doctor will give you a 'sick day' plan.
• Avoid skipping doses – take your medicines exactly as prescribed.

Medical treatments

Treatment includes taking corticosteroid medication to replace cortisol. Some people also need a medication called fludrocortisone to replace aldosterone, which helps balance salt and water. Your doctor will decide the right type and dose for you. Do not change your dose without medical advice. In an emergency, you may need a fast-acting injection of hydrocortisone.

When is surgery considered?

Surgery is not used to treat Addison disease itself. If the cause is a tumour on the adrenal glands, surgery may be needed to remove it, but this is very rare.

Living with this condition

Most people with Addison disease can lead a normal, active life with proper treatment. You need to take your medication every day, usually in the morning and sometimes again in the afternoon. It is important to manage stress and illness carefully.

Lifestyle tips

• Wear a medical ID bracelet or necklace listing your condition and medicines.
• Carry an emergency injection kit if your doctor prescribes one – and make sure family or friends know how to use it.
• Learn to recognise early signs of an Addisonian crisis.
• Stay active and eat a balanced diet – your doctor may recommend a slightly higher salt intake.

Diet and exercise

Eat a balanced diet with enough salt, especially in hot weather or after exercise. You may need extra salty foods if you are not taking fludrocortisone. Exercise is good for you, but increase intensity gradually and always carry water and a snack. If you feel dizzy, stop and rest.

Mental health and emotional wellbeing

Living with a chronic condition can be stressful. Some people feel anxious or depressed. Talk to your doctor if you are struggling – they can refer you to a counsellor or support group. Remember that taking good care of your adrenals helps your mood too.

Prevention

Addison disease caused by an autoimmune process cannot be prevented. However, early diagnosis and treatment can prevent serious complications like an Addisonian crisis. If you have a condition that increases your risk, your doctor may monitor you.

Screening programmes

There is no routine screening for the general population. If you have an autoimmune condition, your doctor may check your symptoms periodically.

Complications

If left untreated

• Addisonian crisis – a life-threatening emergency with very low blood pressure, shock, and loss of consciousness.
• Severe dehydration and electrolyte imbalances (dangerous sodium and potassium levels)
• Increased risk of infections because the body cannot handle stress
• Weight loss, weakness, and inability to perform daily activities

Long-term outlook

With proper treatment, most people with Addison disease can expect a normal lifespan and good quality of life. It requires daily medications and careful illness management, but it does not have to stop you from working, traveling, or enjoying life. Staying in close contact with your healthcare team is key.

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