The Addison’s Chronicles – Part 8…

Two things – I’m sleeping barely at all, and I’m piling on weight. Both, I believe, have the same cause. Yep, it’s Hydrocortisone again.

I’ve noticed that taking extra Hydro (an additional 20mg a day to counter the stress caused by severe pain plus a diet of antibiotics to treat both respiratory and leg ulcer infections – 1g Amoxycillin, t.r.d ), coincides with feeling exceptionally hungry – not eating isn’t an option, the hunger is an imperative – and also with being almost totally unable to sleep. I’m normally awake until 03.30 – 04.00, by which time exhaustion takes over. Then I’m liable to oversleep and not respond to my 06.00 meds alarm, which is seriously unhelpful, extremely painful, and not a little dangerous.  Such a major problem is it that if I should wake anything up to an hour before my meds are due, I’ll take them, just in case. I did that this morning, at 05.40, and when my alarm actually went off, I didn’t even twitch in my sleep, so it’s a good job I did.

I suspect the Hydro is the cause so, yesterday, I stuck to the basic dose to see what happens.

What did happen, with sleep, is that with no extra Hydro but with most of a bottle of wine inside me, I did sleep better – but only very slightly. Foodwise, my one proper meal of the day (I had a tub of cottage cheese, for the calcium**, at about 14.00), was canned salmon and chips (with mayo), at 18.30, and yes, it was as dull as it sounds.

**Despite a relatively high intake of dairy products, I still have a serious calcium deficiency caused – here we go again – by the Hydro. I’ve now been prescribed a supplement as well, which is helping, but very slowly. I can take only half the prescribed dose as the full dose messes quite badly with my heart. Also, the potential effect of extra calcium on my calcified and stenotic aortic valve scares the crap out of me.

I didn’t load up with fruit cake before bed, though, as I usually do (I had a glass of wine and a handful of sour cream and chive crackers instead), but I had to get up for a snack (more crackers and another glass of wine, making it 600ml in total) at 03.30 as I was wide awake, having slept for, ooh, a whole half-hour!

Conclusion: Not taking extra Hydro had no measurable effect on anything, except that the lack caused me to feel much sicker and weaker than I would have had I taken it. This morning I feel dreadfully nauseous, and that’s not happened for quite some time.

And I know I’ve said this before, but when doctors fuck up my life it’s always worth repeating – the fact that the witless endocrinologist at Arrowe Park Hospital who failed to tell me I had Addison’s in March last year, and also hid the fact from my GP (who really should have paid closer attention to my discharge notes a year ago last month, but didn’t until prompted by me), is responsible for my not being prescribed sufficient Hydro last year to cope with the massive stresses I was subjected to, causing me to be far sicker than I should have been. And despite spending 10 weeks in APH last year, no other consultant picked up on the Addison’s either, and the only conclusions I can draw from that is that my notes were criminally incomplete or went unread. Or both.

Note in case my GP reads this – extra hydro is taken in accordance with NICE guidelines, and is from my personal supply (for now, at least, while I can afford it). So no whingeing.