Sunday, 6 July 2014

July 2014 - reflecting on that Addisonian crisis

As I have reported in recent blogs I have just passed the anniversary of my Pituitary gland tumour removal and various hospital visits. What I've been reflecting on in particular is the adrenal insufficiency (Addisonian Crisis) event that happened last June. On occasions I still struggle to come to terms with what that really meant and what having Hypopituitarism means now. 

On a day to day basis, I take two hormone replacements (Testosterone and Hydrocortisone) and everything seems totally normal, it IS totally normal. I live my life just like anyone else. But it is when that Hydrocortisone pill taking doesn't work is when it brings all this into sharp focus - more so when I read this article

A couple of quotes from said article:
"Patients with adrenal insufficiency are at risk of developing life threatening adrenal crisis if steroids are reduced or stopped"

"Fatal but avoidable addisonian crisis is the second most common cause of death in patients with known Addison’s disease, accounting for 15% of deaths in patients with this disease" (I haven't got Addison's disease, but lack of cortisol in Addison's patients and me amounts to the same thing)

Adrenal insufficiency 'features' mentioned in article
Hypotension - I had this (low blood pressure)
Hyponatremia - I had this (electrolyte imbalance in the blood)
Hyperkalemia - I definitely had this (lack of Potassium in my blood)

The BMJ article makes several interesting and stark points about my condition, about adrenal insufficiency (see above quotes). I do carry a blue steroid card in my wallet, an emergency Hydrocortisone injection and a stock of HC pills wherever I I never get caught out. But if I end up not being able to take and keep down my pills because of vomiting like last June and I don't take quicker action, as I didn't last June (because of ignorance) then my blood pressure could fall, I could lose consciousness (which I was very close to doing) and in due course, die from my condition.

As I've said before, my Cortisol levels will have been gradually lowering over several years prior to May 2013 when I was diagnosed with the tumour. Gradually my body got used to ever lower doses of Cortisol, so low that my GP didn't really know how I was getting by. But having sorted that out and started me on the HC pills, suddenly my Cortisol levels were artificially back to where they should have been and once my body got used to that, it could no longer tolerate dropping suddenly back to a level that was much too low....even if that is where it had been for years.

When I was ill last June, when my wife was desperately trying to get an out of hours doctor out to see me, the person Deb spoke to on the phone had cottoned on to the seriousness of my condition and was arranging for me to be admitted to the Medical Assessment Unit in the QA Hospital, but they wouldn't take me until I had actually been seen by a doctor. The phone doctor arranged this, and once seen by the doctor who came out, Deb took me in and I started treatment. But what if the phone doctor hadn't seen that risk....who knows.

So the upshot is I was reading the above article to Deb and saying "I really ought to get one of medical alert bracelets just in case" and she said "oh, so you are finally taking this seriously then". That took me back a bit, I wouldn't say I wasn't taking it seriously, all I see is the day to day task of taking tablets....not what happens if I don't or can't. So I really must sort that alert bracelet/pendant out. The other thing that occurs is maybe it wasn't clear enough to me the consequence of not taking the tablets back then, I knew I had to take them and double the dose if I became ill...and I knew I mustn't stop taking them. But exactly how ill I could become wasn't really made clear, I suppose no-one really expects that to happen so soon.

The other worrying thing is hoping the medical professionals that I come into contact with, are aware of what condition I have, and making sure they fill me up with steroids at the appropriate times.

So now I've got that off my chest, a quick update. Still going fine, feeling great, put on a bit of weight but have levelled out at just under 11 stone for the time being. Still trying to keep fit with the Pilates and some weight training. Still having the odd energy crash, nothing too serious and still have a tingly leg and foot, I think very slowly it is improving but a year down the line, still there.


  1. bollox just wrote a long reply signed into g+ and its disappeared . stay strong!

  2. Thanks marcus - I hate it when that happens! Thanks for taking the time to respond though....