Last updated April 2023.
When first diagnosed with anything new, fear of the unknown is sometimes worse than the actual diagnosis. Lots of people live with adrenal insufficiency with little impact on their daily lives. The secret is to get to know your body and how it responds to certain situations and then how to treat them.
The single most important thing is to try to avoid going into an adrenal crisis, which can lead to collapse and ultimately loss of life.
There are a number of steps towards achieving this.
The first is to make sure that your cortisol levels are kept at a suitable level. This may involve some blood tests to measure the levels during the day. These tests are called day curves and measure how long steroids stay in your system, which allows for a reasonably accurate dosing regime to be established.
Another test which may used is called a Short Synacthen Test. This test measures the Cortisol levels after an injection of artificial ACTH, which should stimulate the Adrenal glands into production.
If you suffer illness or emotional stress then you may need to increase your dose. This is because your body would do this for you if it could. The amount you need will depend on the cause and how your body reacts to the cause. There are various sources of information in the Links page but a starting point would be to double you dose for the duration of the event. This is often referred to as the 'sick day rules'.
You may find it useful to keep a diary of your diet, weight and dose levels. This will help you look back at any related issues and let you learn from them. It will also be very useful if you suffer under-replacement as you will have a history to help avoid the situation that caused it.
You may find that your GP has not studied Adrenal Insufficiency in depth (apologies to those GPs who are up to speed with this condition!). It is worth building up a good relationship with your endocrinology team so that you can contact them in an emergency and also so that they can advise your GP on related matters. The Links page of this website will lead you to lots of useful information so do please spend time familiarising yourself with it.
You should be issued with a Steroid card (See the Links page) to carry at all times saying that you are on steroids and these are not to be stopped. A lot of AI patients also wear a medical bracelet with important info on it. (See the links page)