It can come as a shock when you are diagnosed with Addison's or adrenal insufficiency. If you're new to Addison's, there is lots of practical information and support available for free on our Newly Diagnosed page.

We're here to support you alongside your healthcare team. Don’t be afraid to ask your healthcare team questions and ask for support, you need to understand what Addison's or adrenal insufficiency is and how to look after it too. 

Below are some resources which we hope will answer any questions you may have and guide you in taking on the adjustments a diagnosis requires. 

The essentials

Managing Addison's or adrenal insufficiency can be challenging, but we’re here to support you. It might take a while for you to recognise your body's warning signs of illness or insufficient medication. You can read more about What is Addison's here. This is why it is key you keep the following 4 items on you, as a person living with steroid dependency, at all times: 

  1. Hydrocortisone medication,
  2. Emergency hydrocortisone injection kit,
  3. Medical jewellery, and
  4. Steroid alert card.

>> Read more about these items here

Remembering to take your tablets

Taking your replacement glucocorticoid medication at the right time every day - or extra medication quickly when you are unwell or injured - is essential. If you struggle to remember to take your medication, you're not alone! But this can lead to unpleasant side effects, ineffective treatment and put you at risk of adrenal crisis.

But life is busy! So we've asked the Addison's community what are their top tips for tablet time. Here are some ways to manage your meds and make it part of your routine:

  • Smartwatch: watches such as Fitbits and Apple Watches allow you to set discreet vibrating alarms. Being on your wrist, these are great for making sure you don’t miss a dose due to distraction in a lesson or work meeting or not being near a clock.
  • Apps: Apps allow you to note your medication, to help you keep track of your doses throughout the day. Our two favourite apps are:
    • Medisafe - one of the #1 apps for tracking medication available, you can sync with your family so they know when you're late taking a dose and also set repeat prescription reminders. The app can be downloaded for free for Android and Apple devices
    • My Cortisol – developed by Great Ormond Street Hospital endocrine nurses, this is a free app available for Android and Apple devices to help with emergency care of young people with cortisol deficiency.
  • Dossette box: these boxes are handy ways to store your medication. Choosing the right one depends on your needs. So have a look on Google, Amazon or pharmacies like Boots.
  • On our online shop we offer a "pill pocket" which fits easily into a jean pocket, or school pencil case. This can be a great way of keeping extra medication on you at all times.

Remember carrying your medication and injection kit is similar to an asthmatic always carrying their inhaler and a diabetic carrying their insulin. It allows you to increase your dose if needed, in response to the unexpected demands of daily life. For more ideas on storing your medication read more about our #ShareYourKit campaign and watch our #ShareYourKit Instagram highlight.

What do I do if I've missed a dose?

If in doubt, take your dose again. If you take more of your replacement glucocorticoid medication than you need for a short period, it will do no harm. There is no known toxic dose of hydrocortisone. Read more in our 'Managing Your Addison's' publication.

However if you do not take sufficient extra medication you will feel pretty grotty (which nobody wants!) but may then go on to experience an adrenal crisis if your cortisol levels remain low. So if you miss a dose or can't remember if you've taken your dose, it is far safer to take extra medication as a precaution and then start using one of the memory aids we've recommended above.

School and higher education

Adding in the management of Addison’s when moving into higher education or taking on important exams can seem a bit daunting. When living with an ‘invisible’ condition such as Addison’s, it is vital to consider how you can balance your medication to maintain stability alongside enjoying the student lifestyle and having fun. Just because people can’t see your health condition doesn’t mean it isn’t real. Be careful in what you do, and listen to your body.

Our booklet 'When a student has Addison's: a guide for schools and parents' was written to help young people with Addison's who are in education to explain the condition, considerations needed and support required by a school or educational establishment.

>> Download : When A Student Has Addison's : A Guide For Schools & Parents

>> On our blog, Thanooshan speaks about his experience "My law degree or my Addison's Disease?"

Here's some top tips for getting organised for university and moving city.

  • Move your care. Get registered with a GP in your new city and set up an appointment to meet your new GP.
  • Contact student support at your university so you could tell them you have Addison's and find out what support you might be entitled to. Remember, telling your uni about Addison's doesn't mean it defines you. It just makes you safer and lets you enjoy everything student life has to offer.
  • Apply for the Disability Students Allowance or DSA. This is a scheme that helps you cover some of the extra costs you might have because of a long-term illness.
  • Chat with your new friends about Addison's, how it affects you, what they might need to watch out for and what to do if you have an adrenal crisis.
  • Day to day life. Make sure you have a bag which can easily hold your key Addison's items for when you're out and about. A pill pocket, medic-alert bracelet, NHS steroid card and emergency hydrocortisone injection kit are vital items to always have on you.
  • Alcohol. There is no reason why you can't enjoy alcohol responsibly. But know your limits and avoid that ‘dirty pint’. Yes, no one likes a party pooper, but no one likes a self-induced adrenal crisis either. Vomiting is a trigger for adrenal crisis, so be aware and responsible for your own health.
  • Work stress. Don’t underestimate the effects of work stress on your body. The academic side of university can be intense, and you’re there to do your best. Plan ahead, taking into consideration that your pace might not be the same as your peers i.e. the infamous all-nighters people pull the night before the big deadline may not be as manageable for you. Listen to your body and take extra medication if you are staying up late so putting extra demands on your body and cortisol levels.
  • Be prepared. The odd bouncer on a night out may contest the tablets and injection kit you have in your bag or pocket. Do not let this dissuade you from carrying them with you at all times. You may never need them - but if you do, you couldn’t live without them. Just have your explanation prepared so you can rattle it off at a moment’s notice, thus not disrupting your evening. Learn more about hydrocortisone injection kits here.

Need to talk? Online forum

On our members forum we have a specific "Young People and their Families" section, where you can discuss any specific issues, vent or get advice when you need it in a private, safe space. 

Read through posts left by others or start your own topic to receive advice and support. The forum is a great place to gain new knowledge through the experiences of others and to ask any questions you might have as you grow up.

>> Visit our online forum

Blog

You are not alone in your experiences. As well as in our members magazine, over on our blog we feature posts written by people living with Addison's and adrenal insufficiency. Some have the condition themselves, others have someone in their lives who is steroid-dependent.

>> Visit our blog

Social Media

Follow us on social media! You might find it helpful to chat, find support and discuss issues with others, as well as discover more about our campaigns, information and activities.

>> You can find us on Facebook, TwitterInstagramYouTube, and LinkedIn.

We also host regular Twitter Chats where we ask an expert panel, made up of endocrine professionals as well as expert patients, your questions around a specific topic. Previous topics you might find helpful include:

You can catch up on all the previous conversations via the hashtag #AddisonsQA on Twitter.

Looking for more information? Check out the links below:

We have more information coming soon for Young Adults. Contact us if there are any topics you would like to see on our Young Adults page.

Further resources

RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.

Split into kids (under 12 years old) and young adult (teens to 25), RARE Youth has something for all young people and is a great support site to know you are not alone in your diagnosis of a rare condition; there is a brilliant and empowering rare disease community out there for you.

In 2019 following requests from our members, we were delighted to release "Living with Addison's disease", a book which brings evidence-based clinical best practice with practical day-to-day hints and tips for those with Addison's and adrenal insufficiency.

The book is available on Amazon to allow for worldwide shipping and is free on Kindle.

The book includes a section on "Children and Young Adults with Addison's" as well covering lots of essential information about the condition.

The book won commended in the 2019 British Medical Association (BMA) Patient Information Awards! You read more about the award in our news item here.

You & Your Hormones is an education resource developed and managed by the Society for Endocrinology. You & Your Hormones breaks down the different topics around Addison's disease and adrenal insufficiency into glands, hormones and endocrine conditions. This great resource allows you to learn more about the condition and answer more specific questions you might have.