On Tuesday 2nd October, from 7-8pm we were at our computers hosting another #AddisonsQA Twitter chat. This time we were discussing one of our most requested topics - exercise and steroid dependency.

We were delighted to have an expert panel of 8 join us, consisting of consultant endocrinologists, specialist endocrine nurses and 4 ADSHG members, ready to answer our #AddisonsQA questions! There was fantastic interaction between everyone who joined us so thank you to all who made it such an interesting and informative conversation.

Below we’ve included the 6 questions we asked our experts, and some of the great advice and tips sent in by medics and people living with Addison’s.

The key pieces of advice we took away were:

• paying attention to salt intake (specifically, upping the amount during arduous events),
• always packing an emergency injection kit and making sure others are trained to use it,
• medic alert jewellery,
• and simply expecting, the unexpected.

The conversation online showed how a little bit of reading and learning can really help in managing your personal fitness goals with Addison’s and knowing what to do ‘just in case’, helping to provide peace of mind. 

We are very grateful to all who gave their Tuesday evening to join us for a great tweet chat and for raising awareness of adrenal insufficiency. Thank you!

Follow us on Twitter at @AddisonsUK to hear about our next twitter chat. Questions? Please get in touch on [email protected]

Q1. What is the best thing a steroid dependent patient can do to ensure a healthy lifestyle?

A1. Keep to the lowest daily dose of glucocorticoid (hydrocort) that makes you feel well, but be very pro-active in increasing your dose when you are ill, injured or under the weather.

— Simon H Pearce (@simonhspearce) October 2, 2018

A1: As for everyone, a balanced diet and an active lifestyle with regular exercise are key. However, it’s REALLY important to listen to your body. If you are not feeling well one day, that is not the day to attempt a marathon! #AddisonsQA https://t.co/3mqMMvJd19

— Anna Mitchell (@Anna_L_Mitchell) October 2, 2018

Q1. One of the toughest things about having a long term condition is that you have to do all the things others should ... plus manage the condition. Seems less than fair: but it’s true.

— Stephen Ball (@sball_endo) October 2, 2018

A.1 Family buy in! A healthy lifestyle applies to everyone. My personal focus areas are bone health and a healthy weight. #AddisonsQA https://t.co/j6i5c5VJ7n

— Dr. Pippa Little (@PippaLittle3) October 2, 2018

Q2. Are there any steps a patient with steroid dependence needs to take before undertaking exercise?

Q2. Know yourself; know what you’re getting into; aim for success; plan in case you need more help and support. Carry extra...

— Stephen Ball (@sball_endo) October 2, 2018

A2 I’m not that fit but I do go on occasional ski holidays, then I carry extra meds, glucose tabs and salt sachets. I know when I need more meds as I start to slow right down...friends call it my spinach as it’s a bit like watching Popeye get re-energised 😅

— Elizabeth Fraser (@Frauhaus) October 2, 2018

A2 Plan ahead, keep hydrated and if the exercise you’re doing requires extra Hydro then make sure you take it. Always have your emergency injection kit with you and something sugary just in case. Low Cortisol can lead to low blood sugar as well. #AddisonsQA

— Carl Hall (@esc4p33) October 2, 2018

A2. If it's a training session you do every day, or several times a week, just keep well hydrated. If it's a race or unaccustomed extertion, consider taking an extra 5mg as you start the exercise, and repeat every 3 or 4 hours that you maintain the exertion.

— Simon H Pearce (@simonhspearce) October 2, 2018

When taking on a new sport or challenge, it’s important to be prepared. Watch our step by step video on giving an emergency injection here.

The steroid alert bracelet and emergency cards for wallets mentioned in our Twitter chat are available from our online website - click here to shop.

Q3. And what considerations are there for a steroid dependent patient who is undertaking intense exercise/an extreme challenge?

Wear alert jewellery, ensure you remain well hydrated (eg water with oral rehydration salts added), take extra hydrocortisone for extreme challenges, carry extra oral steroids and an IM injection kit & go for it!! #AddisonsQA https://t.co/sVrFGaD061

— Anna Mitchell (@Anna_L_Mitchell) October 2, 2018

A3. The only other thing to bear in mind is salt depletion. In hot weather, or if you're sweating a lot, take salty snacks. Make sure your fludrocortisone dose is adequete. Beware light headedness and obey your body if you get salt craving.

— Simon H Pearce (@simonhspearce) October 2, 2018

Q4. Do less intense forms of exercise like gardening and walking require any special considerations for people with Addison’s?

No one expects the Spanish Inquisition - Injuries and accidents occur at the most unexpected times so always be prepared (IM kit etc) in case you lop off a finger with garden shears! #AddisonsQA https://t.co/zDFwcBCljM

— Anna Mitchell (@Anna_L_Mitchell) October 2, 2018

A4 Not walking, but yes to gardening. The physical effort of bending, lifting, chopping, digging and carrying really knocks me for six. I will either up-dose with an extra 5mg or play it by ear and take the normal dose early and maybe fit another dose in along the way #AddisonsQA

— Carl Hall (@esc4p33) October 2, 2018

A4 this hit summer I really struggled a couple of times just walking in temps above 25C ...needed extra meds + salt + sugar + cold water + getting out of heat! Was shocked how quickly became overwhelmed by heat...

— Elizabeth Fraser (@Frauhaus) October 2, 2018

Whether you are looking to improve your fitness or regularly engage in sports, Dr Rob Andrews offers some instructive advice on medication for exercise in his article on our website. To read please click here.

Q5. What should a steroid dependent patient do in the event of injury?

Q5. Make people aware: situation, background, what you need, how they can help. Carry the alert systems in case you can’t tell you’re own story

— Stephen Ball (@sball_endo) October 2, 2018

People with Addisons Disease have a very different range of responses to similar injuries. Know as much as possible your response and err on the side of caution.

— Dr. Pippa Little (@PippaLittle3) October 2, 2018

If you are injured and in adrenal crisis extra steroid medication is required immediately. Click here to go to our emergency help page for more information.

Do you have a copy of our adrenal crisis letter in your sports bag? These emergency guidelines give medical treatment guidance for paramedics or hospital staff in the event of an adrenal crisis. Download for free here. 

Q6. What other considerations are there for those who have other conditions alongside Addison’s when undertaking exercise?

This is entirely dependent upon the condition - worth discussing a personalised care plan with your doctor as everyone is different #AddisonsQA https://t.co/WIQJtft0Oh

— Anna Mitchell (@Anna_L_Mitchell) October 2, 2018

If you would like to continue the conversation with other's living with Addison's disease, visit the Fitness Focus section on our online forum. Members share first-hand accounts of how they managed their Addison's while training and reaching their exercise goals. Click here to find out more.

What is a Tweet Chat? A Tweet Chat is a virtual panel discussion that take place on Twitter, using a predefined hashtag which links together the tweets in a virtual conversation. Our Tweet Chat is hosted by the ADSHG Twitter account, @AddisonsUK, using the hashtag #AddisonsQA, where we ask a series of structured questions in order to facilitate the conversation.

Want to read more? Whether you are looking to improve your fitness or regularly engage in sports, Dr Rob Andrews offers some instructive advice on medication for exercise over on our blog.

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