A female pharmacy worker stock taking.

The kits would be used help those with primary or secondary adrenal insufficiency to treat and avoid an adrenal crisis and the need to go to hospital for emergency treatment.

The recommendation is included in a new clinical guideline on identifying and managing adrenal insufficiency in people of all ages, published by NICE today (Wednesday, 28 August).

Adrenal insufficiency occurs when the adrenal glands do not produce enough essential hormones – particularly cortisol and aldosterone.

The recommendation details the standard equipment and information that would be contained in each proposed kit, including an intramuscular hydrocortisone injections, syringes, and needles.

The guideline also recommends that training on how and when to use the kits should be given to people with the condition, close family members and carers. The guideline reminds people with adrenal insufficiency to increase tablet glucocorticoid doses if they are unwell, and to call 999 or attend an emergency department if they become unwell and think they are developing an adrenal crisis.

In 2022-23 there were 1,220 hospital admissions for adrenal crisis. An adrenal crisis occurs when the levels of cortisol in a person’s body fall significantly. It is a medical emergency and if left untreated it can be fatal.

This useful and useable guideline will help to ensure high quality care is offered to people with this condition and support them, their families and carers to make informed decisions about their treatment and long-term care.

Most people with adrenal insufficiency live active lives with few limitations. Our guideline will help them manage the condition effectively and keep themselves safe

Chloe Mezzetti, who lives with Addison’s disease and was a lay member of NICE’s guideline committee, said: “These valuable guidelines will help shape the standard of care and improve patient safety for people living with Addison's and adrenal insufficiency. I have truly enjoyed my role as a lay member and contributing to these guidelines by sharing my lived experience."

After diagnosis, an emergency hydrocortisone injection kit should always be prescribed and explained to new patients to prevent a potentially fatal adrenal crisis. Due to being a rare condition, this has not always been the case for our community. It is fantastic these affordable and widely available emergency injection kits are one of the new recommendations in the NICE guidelines – saving lives. I always carry my injection kit in my bag, and I also have a backup kit which I keep in my car.

The guideline aims to help healthcare professionals spot symptoms earlier and manage the condition effectively.

The guideline recommends that healthcare professionals:

  • Consider adrenal insufficiency in people with an unexplained increase in darkened patches of skin (hyperpigmentation) or when there is no other clinical explanation for the presence of persistent symptoms such as weight loss, nausea or vomiting and lack of appetite.

  • Offer a serum cortisol test between 8am and 9am to people aged one year and over with suspected adrenal insufficiency to help diagnose the condition. The test needs to be administered at this time because this is when cortisol levels peak and the results are most accurate.  

Treatment for adrenal insufficiency usually involves corticosteroid (steroid) replacement therapy for life and the guideline stresses the importance of glucocorticoid as an essential hormone replacement and lifesaving treatment for adrenal crisis.

Adrenal insufficiency can be a life-threatening condition, as it leaves people unable to produce higher levels of cortisol when they face illness, are having an operation or during childbirth. Without this increase in cortisol, the body can go into an adrenal crisis, leading to low blood pressure, coma and, if untreated, death.

It is estimated that between 5,700 and 7,900 people in England have primary adrenal insufficiency (Addison’s Disease) and between 8,500 and 15,800 people have the more common secondary adrenal insufficiency.   

Read the full clinical guideline on adrenal insufficiency: identification and management.

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