Keeping yourself safe
Adrenal Insufficiency (also known as Secondary Adrenal Insufficiency, Hypoadrenalism, Hypocorticolism, Secondary Addisons, ACTH deficiency).
Adrenal Insufficiency in hypopituitarism is caused by a deficiency of the hormone ACTH. This stands for Adreno-Cortico-Trophic Hormone, which is normally released by the pituitary gland.
Before your pituitary damage, you had a hormonal feedback loop, called the Hypothalamic – Pituitary – Adrenal Axis (HPA). This regulated the amount of cortisol you had in your body. Cortisol is a steroid hormone, which is released by your adrenal glands. The adrenal glands are found on top of your kidneys. Cortisol is essential for life and is used in every cell of your body.
The HPA feedback loop is broken when ACTH cells in your pituitary gland are damaged. This might mean you release less ACTH or none. This means the adrenal glands are not stimulated to release enough cortisol.
Because there’s not an ACTH replacement medication, we are prescribed a glucocorticoid replacement, such as Hydrocortisone. This replaces the cortisol we need to stay alive and for our bodies to function day-to-day. If we become unwell or have a shock or accident, our bodies will need more cortisol than provided by the daily steroid replacement dose.
Adrenal Crisis
Without enough cortisol we can become very unwell and go into an adrenal crisis, which can be life threatening if we do not receive more glucocorticoid (steroid) replacement very quickly. It can feel worrying and scary to be diagnosed with adrenal insufficiency. Remember, you can find support and understanding in our community.
You can watch an information video about adrenal crisis here.
Or you can find out more from the Society for Endocrinology here.
Your endocrinologist will share with you “sick day rules” guidance for what to do if you are unwell or experiencing extra stress.
It’s essential for you to carry an emergency hydrocortisone injection with you everywhere. It’s also essential for you and your family to know how to use the injection.
Emergency Injection Kits
Your GP or Endocrine consultant will be able to provide you with what you need for an emergency injection. This is usually a vial of Solu-Cortef (powder form of Hydrocortisone) which is mixed with water for injections, or hydrocortisone sodium phosphate (which is a liquid form that does not require pre-mixing). There will then also be a needle and syringe.
There are some examples of injection kits available for the UK and ROI here. These include a small plastic box, needles and syringes. You might like to have more than one injection kit, for example, one in the car and one in your bag.
Make sure you know when your medication expires, so that you can replace it in advance. Hydrocortisone sodium phosphate tends to have a shorter life than Solu-Cortef.
Many Endocrine departments provide training sessions on how to give a hydrocortisone injection in an emergency. You can also find out more information from Addison’s Disease Self Help Group here.
Watch a video on how to give an emergency injection here.
Medic Alert Jewellery
It is important that you always wear a form of medical alert. This is so that if you become unwell people know what help you need, or what to tell a health professional on your behalf.
There are many companies that make medical alert wristbands, bracelets, necklaces and keyrings. You can choose from many styles and materials. Some people even choose to have a tattoo!
Having clear and correct information can make all the difference, especially when everyone is under stress in an emergency.
Here’s an example of a medic alert bracelet worn by Co-Founder Jenn.
“When I had an adrenal crisis not long after I was diagnosed, my husband read the back of my medic alert bracelet over the phone when he called for an ambulance”.
Jenn Kenworthy, Co Founder
Medical Alert in the car
Consider purchasing a medical alert car window sticker. In an emergency, this can mean that someone coming to help quickly knows you might need additional care. There are many online companies that print custom stickers.
Another great idea is a medical alert document holder that fits onto your seatbelt. It attaches around the seatbelt with Velcro. You can put information inside, such as what help you need in an emergency and where you keep your emergency injection. You can find an example here.
Ambulance system:
Red Flag
In the UK, you can contact your local ambulance service and ask to be flagged on their system. This means your address has a special note next to it on their computer system, so that if they are called out to you at home, they know what to expect. Some ambulance services will have a form to complete, and others will take your details over the phone.
Never call 999 (911 or your country’s emergency number) to flag on the system.
You can ask your GP or Endocrinologist which ambulance service covers where you live. You may also see some ambulances out and about with the name of their region on the side.
If you are in the UK you can search here for the contact details of your ambulance service.
Not all ambulances carry emergency hydrocortisone injections; therefore, it’s vital you always carry your own (with a spare or two at home as well).
NHS Steroid Card
When you start on steroid (glucocorticoid replacement) you should be given a card by your doctor to say that you are dependent on steroids. In the UK it looks like this.
Checklist
Emergency injection kit with spares (from Endocrine Consultant or GP)
Sick day rules (from Endocrine Consultant)
Medic Alert products – stating Adrenal Crisis risk
Flag on local ambulance system – adrenal crisis risk
Steroid emergency card