The role of your GP

Often, symptoms will develop slowly over time as the cortisol or other hormone levels gradually decrease.  It is likely to be your GP that you visit 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 more recognisable 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 achieve earlier diagnosis.

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

  • Blood pressure sitting and standing. A 20 mmHg 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).
  • Addison's disease: 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 the oral mucosa, knuckles, elbows or waistline.

Leaflet for your GP

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.  You may want to have a couple so that you can share one with your GP practice.

Download the digital version

Buy a printed version

Testing for Adrenal Insufficiency by an Endocrine specialist

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 adrenocortioctropic hormone (ACTH). This is the hormone normally produced by your pituitary gland to instruct your adrenal glands to produce cortisol. 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 tests

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.


What happens after diagnosis?

You may feel a whole range of emotions when you receive your diagnosis; from overwhelm to anxiety to relief.  Your endocrinology team will discuss your proposed medication regime and explain to you about adrenal crisis.

Explore the topics below for more information on next steps:

Do I have a disability?

Whilst not everyone might 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.

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

Want to learn more about your condition?

We have a lot of leaflets, publications, videos and more, to help you, and the people around you, understand your condition

Explore our Resource 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. This is particuarly useful if you have just been diagnosed.  Visit our membership page for more information on joining the charity.

Join the ADSHG

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