Diagnosis

The role of your GP

Often you will visit your GP to report the signs and symptoms of adrenal insufficiency: perhaps weight loss, extreme fatigue and nausea/vomiting.

As these symptoms can also be seen in other conditions, misdiagnosis is possible. Some people have reported being treated for depression, or for an eating disorder, as doctors have misinterpreted individual symptoms.

Addison's disease (primary adrenal insufficiency) may be 'easier' to diagnose in people whose skin pigmentation changes (hyperpigmentation) but many GPs will not have come across it before due to its rarity.

One of the important aims of the ADSHG is to raise awareness of adrenal insufficiency and adrenal crisis with GPs, to lead to earlier diagnosis.

Where the patient is stable, the GP should assess for clinical signs, especially:

Blood pressure sitting and standing. A 20mmHg drop on standing indicates clear
postural hypotension.
Proximal myopathy or global muscle weakness (difficulty climbing stairs, getting up
from a sitting/squatting position, or carrying weights such as grocery shopping).
Patchy hyperpigmentation or, in Caucasians, unusual pigmentation in the palmar/
wrist creases (not present in 20% of cases, depending on the patient’s natural level
of melanocytes). Hyperpigmentation is typically most obvious in areas of increased
friction such as oral mucosa, knuckles, elbows or waistline.

Diagnosis and Care of the Adrenal Insufficiency Patient (including Addison's disease)

Our clinically approved leaflet helps GPs better understand the considerations at both diagnosis and treatment stages.

Download the digital version

Purchase a copy or two (so you can give one to your GP practice) from our online shop

Testing for Adrenal Insufficiency

Once adrenal insufficiency is suspected, GPs will refer on to an endocrinologist, a doctor who specialises in treating hormone-related conditions.

Diagnosis is made following hospital blood tests and an assessment of the symptoms.

Short Synacthen Test

The main blood test used for diagnosis is called the short Synacthen test (also known as an ACTH stimulation test or a cosyntropin test).

This measures the ability of your adrenal glands to produce cortisol and involves two blood samples being taken.

The first is a ‘baseline’ reading to measure how much cortisol is in your blood when at rest. You are then given an injection of a hormone called ACTH (this is the hormone normally produced by your pituitary gland to instruct your adrenal glands what to do).
A second blood sample is taken 30-60 minutes after this.
If the adrenal glands are healthy, cortisol production in the second sample will exceed a certain level, commonly 500-550 nmol/L.

By contrast, adrenal glands that aren’t working properly will not be able to produce this amount of cortisol.

Additional hospital blood tests will measure your aldosterone function.

These are plasma renin, sodium & potassium tests. A further antibody blood test to establish the cause of your adrenal failure is recommended. If this is negative, an adrenal scan and other tests may be needed. You can learn more about how Addison's disease and adrenal insufficiency are diagnosed in:

Are Addison’s disease and adrenal insufficiency a disability?

Whilst everyone might not identify as having a disability, people with Addison’s and adrenal insufficiency are covered by the definition of disability under the Equality Act 2010, or if you live in Northern Ireland — the Disability Discrimination Act 1995.

This is because Addison’s and adrenal insufficiency are lifelong conditions and can seriously affect a person’s ability to do normal day-to-day activities. They are fatal if left untreated.

Having said this, the Equality Act treats each person as an individual and it may be that some people with adrenal insufficiency (particularly tertiary adrenal insufficiency, which may not be permanent), will not be covered by the definition of disability. Where there is a lack of clarity, ultimately only a court or tribunal could decide.

However, the key thing is that Addison’s and most cases of adrenal insufficiency are long-term conditions that can seriously affect your ability to do normal day-to-day things if you aren’t able to have your medication or treatment.

If you are unable to work due to your health and require specialist advice, please visit the links below to make sure you get the most appropriate support for you.

Citizens Advice: check what benefits to claim if you’re sick or disabled
Scope: Equality for Disabled People: online advice and helpline available
Turn2Us: benefits calculator to find out what benefits you can claim
Social Security Scotland: Adult Disability Payment and Child Disability Payment

Resource Hub

We have a wide collection of resources available to help you to understand your condition, and to manage it from day-to-day.

Explore our leaflets and materials, which are available to download for free or to order from our online shop.

Resources hub

New members to the ADSHG receive a membership folder full of all of our key leaflets (worth around £15), as a part of their membership.

Join the ADSHG

You may also be interested in:

Working with your Healthcare Team

We share some tips on developing a positive relationship with your healthcare team: supporting them to offer you the care you need for your rare condition.

Newly diagnosed?

If you have just been given a diagnosis of adrenal insufficiency, it can feel overwhelming. Let us guide you through the key bits of information you need to know, and show you where you can get support.

Emotional Wellbeing

Learning to live with Addison's disease and adrenal insufficiency can be overwhelming. You may find yourself getting worried or stressed, or you might not know what to feel. Read our information about living with a long-term condition and know that whatever you’re feeling, you are not alone.

Be prepared for adrenal crisis

One of the most daunting aspects of an adrenal insufficiency diagnosis is the risk of an adrenal crisis. Let us help you to understand the signs and symptoms, and how to be prepared to treat it.