People with adrenal insufficiency should be given an emergency
medical kit with potentially life-saving steroid injections,
according to a new clinical guideline from NICE.
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.
Professor Jonathan Benger, chief medical officer and
deputy chief executive, said:
“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 on the NICE website.