Yes, I know part 5 was only two days ago, but it’s a steep learning curve and new stuff to share comes along pretty quickly (and bear in mind that even though you might know this, there will be someone reading it who doesn’t – and sharing information maximises its value).
So, what do I know today that I didn’t know on Saturday?
For openers, my morning Hydro doesn’t remain in my system long. Diuretics and Addison’s are a poor mix, though the reason why isn’t made clear, but as I pee for Britain (an absurdly precise Continue reading
I can’t help noticing that in parts 2 to 4 I dropped the terminal s from Chronicles. Apologies. I can’t do anything about that without confusing Google but, from now, it’s back.
Infection risk in Addison’s Disease…
One of the first things I learned about Addison’s is that it slows down healing dramatically, especially recovery from infection, which explained why I had such an horrendous year in 2013.
Additional Hydro would have helped, but as the fuckwit endocrinologist at APH failed to tell me I had Addison’s, and my GP failed to spot the reference in my discharge notes until I poked him with a stick a year later, by which time I’d figured out what was wrong with me myself, that didn’t happen.
What I didn’t know, and only found out a couple of days ago, while poking around the online version of the British National Formulary, is that
I’ve just had my bulk Hydro delivered – 6 month’s supply, more or less (500 10mg tabs). I was expecting a bulk pack, but apparently the stuff is available only in 30-tablet packs. 16 of them, plus a box of 20. Total cost I’d estimate at about £800 – my BNF is 3 years old, so maybe more than that by now.
But here’s a thing – based on the info Continue reading
I didn’t send my last letter to my GP, and have deleted it as it’s no longer relevant, because I eventually got a reply to my previous one. Bizarrely, it was tucked inside a meds delivery from the pharmacy yesterday – a stupid place to put it as I almost binned it without even knowing it was there.
Anyway, I got my 6 months of Hydrocortisone, so that’s one problem out of the way. The two-part injectable was ignored, but I’ll pursue that another day.
So, a success but, you know, it really should not
Letter removed as no longer needed – see this post.
So, hey, here we are again.
The purpose of this chronicle is to share what I learn with others, in the hope that it might be useful – that’s the function of a large part of this blog, in fact – but the learning curve is showing no signs of levelling out so far, so I’m back.
NB: For new readers, some of what follows you might have read previously, but as not everyone reads every post there will inevitably be some duplication for the sake of clarity and completeness.
With the benefit of that wonderful thing, hindsight, I am now reasonably confident Continue reading
Well, this has come along a lot sooner than I expected, the reason being my GP, in the space of three days, has twice failed to comply with guidelines for the treatment of Addison’s, first here, and again yesterday.
The first one, he prescribed an additional 10 days of hydrocortisone tablets when the Addison’s Clinical Advisory Panel guidelines say this should be Continue reading
April 1 2014
Dear Dr. Xxxxx,
What is the prognosis?
If untreated, Addison’s disease is always fatal.
Doubtless this risk remains if Addison’s is not treated in accordance with its various guidelines, too. There are valid reasons for their existence – they should not simply be disregarded.
So I have to ask you, Dr. Xxxx, if you feel you cannot or will not comply with the guidelines as outlined below, and for the reasons given, regarding prescribing in quantity, to please refer me to an endocrinologist as a matter of extreme urgency. And, please, not the idiot who fouled up at APH. Given what he’s responsible for putting me through I cannot be responsible for the consequences were we to meet.
I am, I confess, staggered to learn that your “larger number” of hydrocortisone tablets amounts to a mere 30. This leaves very little scope for, well, anything really, and I have to ask you, especially in the light of what follows, to please reconsider.
For example, the NICE Guidelines: Intercurrent illness – adjustment of steroid dose section state that:-
“If the person is on antibiotics for infection or sepsis, the normal glucocorticoid (hydrocortisone, dexamethasone, or prednisolone) medication should be doubled until recovered.” See footnote on this subject.
There is a sputum sample on its way to APH; it will, I believe, require
I think it might be useful to record my coming to terms with Addison’s Disease, much as I did with Chronicles of the Heart and my heart-related problems and now, as then, I’ve been lucky to survive even more consultant-related fuckuppery .
As I’ve said, my Addison’s was diagnosed a year ago, but I wasn’t told, and my GP tells me that the information sent to him was hidden, and I quote “Your specialist buried the mention of blood tests in his discharge summary…”.
I don’t know who that incompetent Continue reading
Hopefully my last, anyway – I still need injectable steroids for Addison’s support, hence this letter:-
March 29, 2014
Dear Dr. Xxxxxx
Thank you for your letter of March 26.
I am deeply unhappy to learn that, once again, APH have obscured vital information. What is wrong with these people? Does no-one there do their job properly? This ongoing incompetence is just one of many reasons for my reluctance to go anywhere near the place. I still don’t know, for example, why I spent about 10 days (unconscious for part of the time, I lost track), in the Stroke Unit in August last year – nobody would tell me.
To set your mind at rest, I have