If you have Addison's disease, you'll need to take daily medicine to replace the lost hormones. This should help you to live an active life, although many people find they still need to manage their fatigue.
However, most cases are caused by a problem with the immune system that cannot be cured.
Treatment usually involves corticosteroid (steroid) replacement therapy for life. Corticosteroid medicine is used to replace the hormones cortisol and aldosterone that your body no longer produces. It's usually taken in tablet form 2 or 3 times a day.
Aldosterone is replaced with a medicine called fludrocortisone. Your GP may also ask you to add extra salt to your daily diet, although if you're taking enough fludrocortisone medicine this may not be necessary. Unlike most people, if you feel the urge to eat something salty, then you should eat it.
In general, the medicines used for Addison's disease do not have side effects, unless your dose is too high. If you take a higher dose than necessary for a long time, there's a risk of problems such as weakened bones (osteoporosis), mood swings and difficulty sleeping (insomnia).
Many people with Addison's disease find that taking their medicine enables them to continue with their normal diet and exercise routines.
However, bouts of fatigue are also common, and it can take some time to learn how to manage these periods of low energy.
Some people find that needing to take regular doses of medicine is restrictive and affects their daily life or emotional wellbeing. Missing a dose of medicine, or taking it late, can also lead to exhaustion or insomnia.
You'll usually need to have appointments with an endocrinologist every 6 to 12 months so they can review your progress and adjust your medicine dose, if necessary. Your GP can provide support and repeat prescriptions in between these visits.
Failing to take your medicine could lead to a serious condition called an adrenal crisis, so you must:
- remember to collect your repeat prescriptions
- keep spare medicine as necessary – for example, in the car or at work, and always carry some spare medicine with you
- take your medicine every day at the right time
- pack extra medicine if you're going away – usually double what you would normally need, plus your injection kit (see below)
- carry your medicine in your hand luggage if you are travelling by plane, with a note from your doctor explaining why it is necessary
- carry a steroid emergency card or download one onto your mobile phone
You could also tell close friends or colleagues about your condition. Tell them about the signs of adrenal crisis and what they should do if you have one.
NHS steroid emergency card
If you have Addison’s disease, you’ll need to take steroids on a long-term basis, so you should keep a steroid emergency card with you at all times.
The card will make healthcare professionals aware you’re taking steroids if you’re admitted to hospital in an emergency. This means they’ll be able to make sure you get any treatment you need appropriately and quickly.
The card describes the steps that need to be taken in an emergency. It also has a QR code that links to further specialist advice. You can download and carry it with you, or you could use the image of the card as a screensaver on your mobile phone to show healthcare teams in an emergency.
Medical alert bracelets
It's also a good idea to wear a medical alert bracelet or necklace that informs people you have Addison's disease.
After a serious accident, such as a car crash, a healthy person produces more cortisol. This helps you cope with the stressful situation and additional strain on your body that results from serious injury. As your body cannot produce cortisol, you'll need a hydrocortisone injection to replace it and prevent an adrenal crisis.
Wearing a medical alert bracelet will inform any medical staff treating you about your condition and what medicine you need.
Medical alert bracelets or necklaces are pieces of jewellery engraved with your medical condition and an emergency contact number. They're available from a number of retailers. Ask your GP if there's one they recommend, or go to the MedicAlert website.
If you need to stay in hospital, the healthcare professionals responsible for your care will also need to know you need steroid replacement medicine throughout your stay. It's important to note that this advice still applies even if you're not supposed to eat or drink (nil by mouth) for any reason.
At certain times, your medicine may need to be adjusted to account for any additional strain on your body. For example, you may need to increase your medicine dosage if you experience any of the following:
- an illness or infection – particularly if you have a high temperature of 38C or above
- an accident, such as a car crash
- an operation, dental or medical procedure – such as a tooth filling or endoscopy
- strenuous exercise that's not usually part of your daily life
This will help your body cope with the additional stress. Your endocrinologist will monitor your dosage and advise about any changes.
Over time, as you get used to the condition and learn what can trigger your symptoms, you may learn how to adjust your medicine yourself. However, always consult your GP or specialist if you're unsure.
You and a partner or family member may be trained to administer an injection of hydrocortisone in an emergency.
This could be necessary if you go into shock after an injury, or if you experience vomiting or diarrhoea and are unable to keep down oral medicine. This may happen if you're pregnant and have morning sickness. Your endocrinologist will discuss with you when an injection might be necessary.
If you need to administer emergency hydrocortisone, always call your GP immediately afterwards. Check what out-of-hours services are available in your local area, in case the emergency is outside normal working hours.
You can also register yourself with your local ambulance service, so they have a record of your requirement for a steroid injection or tablets, if you need their assistance.
Adrenal crisis, or Addisonian crisis, needs urgent medical attention. Dial 999 for an ambulance if you or someone you know is experiencing adrenal crisis.
Signs of an adrenal crisis include:
- severe dehydration
- pale, cold, clammy skin
- rapid, shallow breathing
- low blood pressure
- severe vomiting and diarrhoea
- abdominal pain or pain in the side
- fatigue and severe muscle weakness
- severe drowsiness or loss of consciousness
In hospital, you'll be given lots of fluid through a vein in your arm to rehydrate you. This will contain a mixture of salts and sugars (sodium, glucose and dextrose) to replace what your body is lacking. You'll also be injected with hydrocortisone to replace the missing cortisol hormone.
Any underlying causes of the adrenal crisis, such as an infection, will also be treated.
If you're receiving treatment for Addison's disease, you're entitled to a medical exemption certificate. This means you do not have to pay for any prescriptions you need.
See help with prescription costs for more information.