Adrenal Insufficiency - Feb 21

 Here's a taster of the discussions we had at #PitHour on 17th Feb 2021, discussing the NHS Steroid Card and keeping safe with adrenal insufficiency.

What are your top tips for staying safe with adrenal insufficiency? Any AI life hacks to share?

Never run out of tablets. Know your body. Never worry about temporary increase in dose. Keep steroid card and inform all before procedures. #pithour

— Miles Levy (@mileslevyendo) February 17, 2021

Set an alarm to remind you to take your steroids. Also don’t be afraid to updose if you’ve overdone it or if you’re not feeling well. It’s better to take more and be ok rather than not taking enough and ending up in crisis.

— marina owen (@mpowen123) February 17, 2021

If in doubt use your emergency injection kit and seek medical attention.

— Julie Victoria (@juliesharp86) February 17, 2021

Poll: Were you prescribed an emergency injection kit when you were diagnosed with adrenal insufficiency?

63 responses

54% Yes, 46% No

How can partners, carers, family and friends help to keep patients with adrenal insufficiency safe?

Listen to the patient. I know how I feel when things are going wrong. Ialways try extra tablets before I have to inject or be injected if I'm too slow. Learn the signs of an incident the same as I did. Act smoothly efficiently to inject me & keep talking to me, my senses improve.

— TazRef (@ref_taz) February 17, 2021

 What should patients with adrenal insufficiency expect from their routine endocrine review?

A good review should include ensuring the balance is right between under abs over treating with steroids. This is based on symptoms, examination, blood tests and bone density. Also ensure no associated conditions and talk about any recent advances. #pithour

— Miles Levy (@mileslevyendo) February 17, 2021

To talk about how you are feeling day to day, if you’ve needed to use your IM steroid/updose & how often, bring a list of medications & bring along any questions you have! Don’t be afraid to ask for a steroid education refresher at any time!!! #PitHour

— Dr Dr Anna Mitchell (@Anna_L_Mitchell) February 17, 2021

Poll: It’s very important to increase your steroid dose when you’re sick. Were the sick day rules explained to you when you were diagnosed?

40 responses

37.5% Yes explained clearly, 32.5% Yes explained partly, 10% Yes little explanation, 20% No explanation

Is there anything else The Foundation can do or any products we could source that would make you feel safer with your adrenal insufficiency?

A similar card to the emergency card that could be shown to explain tapering steroids down. If I am outlier after an admission I end up having to explain this and my complicated transplant meds. Make my life easier with one less complication when I’m felling below par

— poliwigg (@poliwigg) February 17, 2021