Addison's disease

Many of the symptoms of Addison’s disease are the same as the symptoms of other conditions. Symptoms of Addison’s disease include: extreme tiredness (fatigue) areas of skin that are darker than surrounding skin – this may be harder to see on brown or black skin loss of appetite, weight loss, tummy pain, feeling or being sick and cravings for salty foods feeling dizzy or light-headed when standing up joint pain, muscle weakness and muscle cramps headache a slightly raised temperature feeling thirsty and needing to pee a lot difficulty concentrating anxiety and depression Addison’s disease most commonly affects adults between the ages of 30 and 50, but it can sometimes affect children.

If a GP thinks you or your child might have Addison’s disease, they’ll refer you to a specialist. This is usually a hormone specialist (endocrinologist), although children are often referred to a doctor who specialises in the treatment of children (paediatrician). The specialist will ask about your symptoms and you may have: a test to see how well your adrenal glands are working by checking samples of your blood before and after having an injection of a medicine called Synacthen blood tests to check your hormone levels and how well your thyroid gland is working

There’s currently no cure for Addison’s disease, but there are medicines that can help manage the condition. If you have Addison’s disease, your adrenal glands are not producing enough hormones, including types of hormones called steroids. The main treatment is steroid medicine to replace the missing hormones your body needs. Medicines you may be given include: hydrocortisone prednisolone fludrocortisone You’ll usually need to take your medicine every day for the rest of your life. It’s important you always have enough to avoid running out. At certain times you may need to take extra medicine, such as when you’re unwell, about to have surgery, or during stressful periods like when taking exams. Your specialist will be able to advise you about this. If you’re taking steroids, you should carry a steroid emergency card with you at all times. This tells healthcare professionals you have Addison’s disease and you take steroid medicine that should not be stopped suddenly. You can also get jewellery and wristbands with details of your condition and the medicine you take engraved or printed on them.

Adrenal crisis is the most serious complication of Addison’s disease. During adrenal crisis your symptoms get worse very quickly. This can be triggered by things like an infection, an accident or injury, or surgery. It can cause problems such as: severe dehydration low blood pressure (hypotension) seizures (fits) loss of consciousness stroke your heart suddenly stopping (cardiac arrest) Adrenal crisis is a medical emergency and can usually be treated with an injection of steroid medicine. You should be given an emergency kit so you can give the injection yourself if needed. Your specialist may also give you or your carer training in what to do if you have adrenal crisis.

Addison’s disease is a serious condition that can be challenging to live with. You’ll need to remember to take your steroid medicine every day and there may be times when your symptoms get worse or you need emergency treatment. But with treatment, you can have a good quality of life with a normal life expectancy. You’ll have appointments with your specialist to discuss things like: your symptoms how well your medicine is working how confident you feel about managing your condition Addison’s disease and pregnancy It’s very important Addison’s disease is well managed during pregnancy otherwise it can cause serious problems, including an increased risk of miscarriage. If you’re planning a pregnancy, your specialist can tell you what you need to do to manage your condition and keep healthy during pregnancy.

The most common cause of Addison’s disease is the immune system mistakenly attacking and damaging the adrenal glands. This means the adrenal glands are unable to produce hormones that your body needs. Other causes of Addison’s disease include: your adrenal glands being bigger than usual at birth (congenital adrenal hyperplasia) infections, such as tuberculosis , meningitis , flu , cytomegalovirus and HIV , which can damage your adrenal glands surgery to remove your adrenal glands

If you or your child have Addison’s disease, healthcare professionals will support you throughout your treatment. You may also find it helpful to get support from other people with Addison’s disease, or parents of children with the condition. Addison’s Disease Self-Help Group (ADSHG) The charity Addison’s Disease Self-Help Group (ADSHG) provides a range of support and information for people affected by Addison’s disease. Website: www.addisonsdisease.org.uk What is Addison’s disease? (Addison’s Disease Self-Help Group) Helpful resources (Addison’s Disease Self-Help Group) Addison’s sanctuary of support (Addison’s Disease Self-Help Group)

If you or your child have Addison’s disease, your care team will pass information on to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) . This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.