Cortisol (or hydrocortisone which is what it is called when taken as a tablet or injection) is the most important hormone in the body. Doctors will therefore make sure this hormone is checked when you first come to clinic and in some of you every one or two years. If you don’t make enough you must take your hydrocortisone medication every day to keep you well and increase it if you become unwell otherwise you can become SERIOUSLY unwell.
Why do some young people with conditions affecting their hypothalamus and pituitary gland need to take hydrocortisone?
The pituitary gland produces a hormone called adrenocorticotrophin hormone, ACTH for short, and this hormone stimulates your adrenal glands to make a hormone called cortisol which is what hydrocortisone is called when produced by the body. This means that if the pituitary gland cannot produce ACTH your adrenal glands will not be able to make cortisol. Your adrenal glands are healthy it is just the messages from the hormones from the pituitary gland that are wrong.
How will I know if I am not producing enough cortisol/hydrocortisone?
If your adrenal glands not working properly because you are not producing enough ACTH people can experience problems with how their body functions – growing less well, feeling tired, losing weight, feeling sickly, becoming unwell. The doctors may pick it up first by doing blood tests. and finding that your cortisol/hydrocortisone levels are low.
If I have a problem not making enough cortisol/hydrocortisone how will it be treated?
It is easy to give you the cortisol back that your adrenal glands are not making in the form of hydrocortisone. Hydrocortisone comes as a small tablet that has to be taken every day. Unfortunately it has to be taken three times a day because it doesn’t stick around in your body that long – so if you don’t take it every 4 or so hours your body runs out which may make you tired. Try and find ways to make it easy for you to remember. Your doctor will ask you how you are feeling and if you are finding it difficult to remember particularly the lunch time dose (so tell them).
If I become unwell what should I do with my hydrocortisone?
THIS IS VERY IMPORTANT. If you become unwell, I mean properly unwell, something that makes you feel that you want to stay at home or go to bed, something like flu, a nasty sore throat or feeling/being sick with or without diarrhoea you should take double doses of hydrocortisone and let your family or your doctors and nurses know. Sometimes if you are being sick or just aren’t getting any better you may need an injection of hydrocortisone. You may have one at home or you may need to come to hospital.
Make sure when you are out you carry a steroid card or wear a bracelet or necklace which says you are on hydrocortisone. It is also good to tell your friends just in case something happens so that other people know to give you hydrocortisone. I know it sounds dramatic but it is about being safe. Make sure you talk this through with your doctors and nurses.