In this article, Emily Ryder-Pollard, one of our Endocrine Specialist Nurses, discusses self-management with adrenal insufficiency and how to become an ‘expert patient’. This article was written in Summer 2026.
Self-Management with Adrenal Insufficiency: what can you do?
It is important to ensure that as someone with adrenal insufficiency, you are aware of key aspects to support the management of your condition independently and remain safe:
Knowledge of the Sick Day Rules
Ensuring that you have complete awareness of these is fundamental in order to prevent adrenal crisis. You can find out more about Sick Day Rules on our website.
Become familiar with steroid precautions for surgery/dental procedures etc.
This information is also available on our Steroid Sick Day Rules webpage.
- Remember: Double your dose of steroids during a period of illness/injury or extreme stress, or if on antibiotics, double the dose for the full course.
- Key Tip: if you are questioning whether to double dose, the likelihood is that you need to!
Emergency Hydrocortisone Kit
It is important that you always carry an Emergency Hydrocortisone Kit with you.
This must include:
- Hydrocortisone Sodium Succinate
- Water for Injection
- needles and syringes
If you are planning on travelling, ensure you have a letter from your endocrine team detailing that the medication and kit contains emergency medication and keep it on you and easily accessible if needed.
Check the dates on the contents of the kit and top up when required.
Supplies are often provided by your local endocrine team or GP (area dependent).
Steroid Emergency Card and identification
Ensure that you have a steroid emergency card and some form of identification to alert people to the fact that you are steroid dependent (e.g. medical bracelet etc).This is particularly helpful in periods where you may be unable to self-advocate.
Extra supply of steroids- ‘rescue pack’
Have a 1 or 3 month (area dependent) extra supply of steroids to use on sick days, instead of using your routine prescription and consequently running out.
Top Tips for working with your endocrine team
- Clarify your diagnosis. Health Care Professionals must ensure that an individual is aware of their diagnosis to promote understanding, knowledge and self-management. Ensure to clarify this at your appointment and request further information/resources and signposting if you feel this would be helpful.
- Come prepared to appointments. Prior to your appointment make notes with any concerns or questions to take with you. This helps to act as a prompt and ensure you ask everything you need. There can be a lot of information at consultations, therefore having someone else with you can be useful when recalling information later and act as a support network.
- Ensure that the follow up plan is established: Have knowledge of what follow up is going to be in place and any relevant protocols.
- Gain further information on diagnosis (if appropriate) using reputable sources: Develop a good working knowledge of your condition to best support your wellbeing, enabling you to live well with adrenal insufficiency. It is recognised that not everyone wants to know further information about their diagnosis, however knowledge of the important factors is a must!! Gaining further information is at your own discretion.
- Know your symptoms. Being aware of how you are feeling is fundamental. Get to know what ‘normal’ feels like for you to help identify changes in symptoms and act accordingly e.g. double dosing.
- Request Steroid Education:
Each area will differ with what they deliver as a service, however, ask your local endocrine team if they provide additional steroid education, particularly regarding demonstration on how to draw up/administer the emergency hydrocortisone injection.
A step-by-step video on mixing and administering the emergency injection can be found on our website. - Contact details of local endocrine team: Ensure that you have the contact details for your local endocrine team and keep them somewhere safe!
- Build a relationship with your endocrine team. Having a strong rapport with your local endocrine team can help with crisis prevention, dose optimisation and medication adjustments.
- Connect with communities. Reach out to communities to help with practical experience, emotional and psychological support.
- Always seek advice: It is of great importance that, if needed, you seek advice and support from your local endocrine team to help navigate your diagnosis.
We can’t get involved in the medical or non-medical management of individual cases, but you can contact our Endocrine Nurse Helpline for general clinical advice about self-management of adrenal insufficiency.
You can also contact our General Information Helpline. This helpline is ran by our experienced staff and volunteers, who may be able to answer your general questions about self management of adrenal insufficiency.
Learn the common mistakes
- Underdosing during illness
- Delaying injections
- Abrupt steroid reduction/stopping medication completely
Tips for travelling with adrenal insufficiency
- Carry double medication supply
- Always take a rescue pack of steroids
- Bring printed prescription/travel letter
- Carry injections in hand luggage
- Know nearby hospitals
- Adjust for time zones carefully
Key aspects:
- Learn the early warning signs of adrenal crisis. These can be found on our website.
- Know when to increase steroids. During time of illness, injury or extreme stress/bereavement.
- Be clear on when emergency treatment is needed
- Learn to know how ‘normal’ feels
- Learn your medications thoroughly. This includes knowing your exact doses, timing, regime etc.
- Know when to seek advice and support
Become an “expert patient”
Becoming an ‘expert patient’ with adrenal insufficiency means developing the knowledge and skills to manage your condition confidently. Being well informed can make a significant difference to living well. Benefits include:
Decreased risk of adrenal crisis. Knowing whemn and how to increase your steroid medication can help prevent an adrenal crisis.
Greater confidence in self-management. You will be able to recognise the early warning signs, adjust treatment when appropriate and understand when to seek urgent medical care.
Better quality of life. Awareness on how to balance medication, anxiety, travel and illness helps to reduce stress and maintain normal daily activities.
Improved communication with healthcare professionals. Having an in-depth knowledge of your condition allows you to take an active role in treatment decisions and management.
Reduced hospital admissions. Good education about sick-day management and emergency treatment can decrease a preventable adrenal crisis and subsequent emergency admissions.
Support for others. Expert patients can share their experience through support groups, helping newly diagnosed people navigate their condition.
Advice to take away:
- Plan ahead
- Act early
- Reduce avoidable risk
- Create routines
- Educate close contacts
