Managing your Addison’s Sheet 1 of 2
Managing
your
Addison’s
1 What is
Addison’s
Disease?
Addison’s is a rare endocrine
condition where the adrenal
glands cease to function,
so that your body no longer
produces enough of certain
essential hormones, known as
steroid hormones. Fortunately,
you can replace these essential
hormones with daily steroid
tablets. The hormones that your
body no longer produces
enough of are:
n Cortisol, aldosterone and
DHEA (primary adrenal
insufficiency).
You have been diagnosed
with Addison’s disease.
This leaflet gives some
information to help
you manage your health
Addison’s disease is a rare, potentially fatal,
condition where the adrenal glands cease to
function. Life-long treatment with replacement
steroid hormones is required.
With the right balance of medication and the
support and knowledge of their GPs, nurses and
specialists, people with Addison’s can expect to
have a normal life span and to lead full and
productive lives.
www.addisons.org.uk
n Cortisol and DHEA
(secondary adrenal
insufficiency).
Cortisol regulates blood
pressure, blood sugar and
muscle strength; aldosterone
regulates sodium and fluid
balance; DHEA influences
stamina and libido.
2 How is
Addison’s
diagnosed?
Diagnosis is done by
hospital blood tests and an
assessment of your physical
symptoms. The main blood
test measures how much (or
how little) cortisol your body
can produce. It is called a
Synacthen (ACTH stimulation)
test. Additional hospital
blood tests will measure your
aldosterone function. These
are plasma renin, sodium &
potassium tests.
ADSHG/ACAP/005/March 2013
5 Are there any
special precautions
I will need to take?
You will need to take extra
medication whenever you are
sick or injured and before any
kind of surgery. The general
n You can take your hydroguidelines for extra steroid
cortisone on an empty stomach,
cover are:
unless you have pre-existing
1 Double your normal dose
digestive problems.
of hydrocortisone for a
n Hydrocortisone
n Always carry spare
fever of more than 37.5˚C
15mg – 25mg per day
medication with you.
or for infection/sepsis
This replaces cortisol and is
n Order your repeat
requiring antibiotics.
usually taken in three divided
prescription in plenty of time –
doses.
2 For severe nausea, take
ideally maintaining two months
20mg hydrocortisone and
n Fludrocortisone
reserve supply – to ensure
sip rehydration/electrolyte
50mcg – 200mcg per day
you do not run out of essential
fluids.
This replaces aldosterone and
steroid medication.
is usually taken in one or two
3 On vomiting, use the
n Take an extra supply of
daily doses.
emergency injection
medication (ie double what
immediately. Then call a
n Possibly, DHEA
you need) with you on holiday
doctor, saying Addison’s
25mg – 50mg per day
plus your injection kit.
emergency.
This is usually taken in a single
n Carry your medication and
morning dose.
4 Take 20mg orally
injection kit in your hand
immediately for serious
Most specialists will also
luggage when travelling by
injury to avoid shock.
prescribe an emergency
plane, along with a doctor’s
injection kit in case of vomiting:
5 Ensure your surgical team,
note explaining why you need
n Efcortesol 100mg (liquid)
to carry needles and syringes. dentist or endoscopist are
or
aware of your need for
n It can take several months
n Solu-Cortef 100mg
extra medication and that
(powder) plus 2ml vial of water after diagnosis to get the
they have checked the
balance of your medication
plus
ACAP surgical guidelines for
adjusted to the right amount
n Intra-muscular (blue, IM)
the correct level of steroid
and timing.
needles and 2ml syringes.
cover.
n Over time, your medication
requirements can change.
6 What could go wrong
Mostly in the early years after
if I don’t take enough
diagnosis, a small proportion of medication?
people with primary Addison’s Patients taking the precautions
can do without fludrocortisone. recommended in section 5
usually manage their illnesses
n You will need to work with
smoothly, without going into
your doctors to monitor any
crisis. But in cases of vomiting
new symptoms which might
or shock, people with Addison’s
mean you need to adjust your
can experience a sudden drop
medication.
3 How is Addison’s
treated?
Lifelong, daily steroid
medication is essential. Most
people take their medication
three times a day, starting
when they first wake up and
then at five to six hourly
intervals in the day. In the UK,
you will probably be prescribed:
4 What do I need to
know about managing
my medication?
n Take your tablets every day,
at the right time of day. They
are essential for life.
Managing your Addison’s Sheet 2 of 2
Managing
your
Addison’s
For further information about Addison’s,
to join the group or make a donation, please visit our
website at www.addisons.org.uk
The Addison’s Disease Self-Help Group works to support
people with adrenal failure and to promote better medical
understanding of this rare condition. Registered charity
1106791, established 1984.
The Addison’s Clinical Advisory Panel is a group of
endocrinologists with an interest in adrenal medicine.
It advises the ADSHG on medical matters.
This leaflet has been authored by:
Prof John Wass Churchill Hospital, Oxford
Dr Trevor Howlett Leicester Royal Infirmary
Prof Wiebke Arlt University Hospital, Birmingham
Prof Simon Pearce Royal Victoria Infirmary, Newcastle
Please contact:
ADSHG information, PO Box 1083, Guildford GU1 9HX
Email: [email protected]
Website: www.addisons.org.uk
This leaflet may be copied for personal use or by medical
practitioners for the education of their patients. Otherwise,
it should not be reproduced without written permission
from the ADSHG.
www.addisons.org.uk
in blood pressure. If you do not life. Your endocrinologist
take sufficient extra medication, will monitor for this or other
you may experience an adrenal conditions such as diabetes.
crisis.
Your GP will provide regular
healthcare, such as support
Adrenal crisis is a state of
for minor illnesses, in between
acute cortisol shortage with
these visits and will issue
similar symptoms to your
repeat prescriptions for your
pre-diagnosis illness. Warning
medication.
signs include: severe nausea,
headache, dizziness, extreme
n It is advisable to receive the
weakness, chills or fever,
annual winter flu vaccine from
confusion.
your GP’s surgery, as flu-like
infections are a known cause
n If you feel severely unwell, take extra medication of adrenal crisis in steroiddependent patients.
then call a doctor.
n There are no restrictions on
activities such as driving. It is
a good idea to keep a second
injection kit in the car, in case
of injury.
n There is no need to adopt
a special diet or any dietary
restrictions, although a low-salt
diet is usually best avoided.
Grapefruit and real liquorice
can amplify the effects of your
steroid medication and are best
consumed sparingly.
n For any sports with a risk
of physical injury, you must
ensure that a team-mate has
been trained to administer an
emergency injection if needed.
11 Are there any
long-term side effects
from my medication?
Most people do not experience
side-effects, because
your steroid medication is
prescribed at a moderate
replacement dose, rather
than the high pharmacological
doses used to treat conditions
like asthma.
n Most people – including
those with exceptional fitness –
experience episodes of unusual
n A repeat prescription length
n An emergency injection
fatigue. At times you will need to
of 3-6 months at a time is
followed by urgent hospital
n If your dose is too high,
allow your body to catch up, with
recommended for essential
treatment is needed for an
so that you are heavily overextra rest.
steroid medications, in case of
adrenal crisis.
medicated, there are longunexpected supply shortages.
term risks of osteoporosis,
n We recommend that you
9 Can I have children?
n You need to ensure your GP With the right medical support, excessive weight gain or Type 2
wear a MedicAlert bracelet.
diabetes.
understands the acute nature women can expect to have a
MedicAlert keep emergency
of your steroid dependence
treatment instructions on file
healthy pregnancy and normal n A few people have severe
and your occasional need for
and will attach these to your
reactions to the fillers in
childbirth. Extra medication is
emergency care.
records.
standard medication, eg.
needed for childbirth.
lactose intolerance, and need
n If your job involves the risk of You are entitled to receive
to have their tablets specially
10 What about
physical injury (eg fire services, your medication free of
prepared.
sport
and
exercise?
military) you will need to advise prescription charges and
n
Once
you
have
recovered
to receive an annual flu
your employers of the risks
12 Why is it called
from your pre-diagnosis
vaccine.
of adrenal crisis and ensure
Addison’s disease?
illness,
you
can
attain
a
that colleagues are trained
n Your GP must certify
normal level of physical fitness The condition is named after
to administer an emergency
your entitlement to free
Thomas Addison, the London
(unless you have other health
injection if needed.
prescriptions on a Medical
doctor who first identified the
complications).
Exemption card.
condition around 1850. It
7 What kind of
n Gentle exercise such as
affects up to 140 people per
medical support and
recreational swimming, walking
8 What kind of quality
million in the UK. Although it is
monitoring will I need?
does not usually need extra
of life can I expect?
classified as a disease, it is
Usually, your endocrinologist will
medication.
n People with Addison’s can
neither infectious, nor easily
want to see you as an
expect to have a normal life
n Challenging physical exercise, inherited.
outpatient every 6-12 months.
span. It is not unknown for
such as competitive sport,
people with Addison’s to live into needs extra medication. You
n Around half of those with
their 90s.
autoimmune Addison’s will
may need up to double your
develop another endocrine
normal dose during
condition – like hypothyroidism
the competition.
– at some stage in their
ADSHG/ACAP/005/March 2013