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
full copies of both the NICE guidelines for Addison’s , plus those of the Addison’s Disease Self-Help Group (hard copies with electronic copies on all my computers, one of which will always go with me into APH, should the need arise), and, I assure you, I shall follow both assiduously, particularly NICE (aside from the benefits of steroids, I am also fully aware of the risks – my plan is to keep a hydro diary).
I am concerned, however, that your letter makes no mention of injectable hydrocortisone, which really is an essential part of the support package (I hate needles – thanks to APH wrecking every available vein on my last admission, what was a normal aversion to needles is now pretty much a full-blown phobia – but I hate the idea of dying even more).
I am a member of the Addison’s Disease Self-Help Group (http://www.addisons.org.uk/index.html ), and, as recommended in the NICE guidelines, I have my own injection kit on order from the Group – I have also arranged for the scheme manager, here, to inject me, if necessary, should I be unable to do so myself (she has the requisite skill-set), though I have nothing to use in it yet, of course.
I hope I won’t need it, but better to have it and not need it, than not have it and die from the lack.
I live alone, as you know – should I fall victim to an Addison’s crisis, injecting myself is my best chance of survival, and as the administration of hydrocortisone by injection is highly time-sensitive, self-medication is the norm. Were it not the norm, in the event of a crisis, the time taken to call an ambulance, and for it, or a paramedic, to arrive, or to get a home visit, could result in serious harm, or worse. This problem is compounded by the fact that, for someone chronically sick, as I am, Addison’s is far more dangerous than it would be for someone who is otherwise fit and well.
As it is supplied as a solution, Efcortisol is the best injectable option (source, NICE), for ease of use (the Addison’s Clinical Advisory Panel recommendation is 5 vials in case of breakage; personally I think two would be sufficient; given my mostly housebound status the risk of breakage is minimal). I hope you are agreeable to this (the cost is minimal too).
I now have a MedicAlert bracelet listing all my conditions but giving prominence to Addison’s. And I carry a steroid card on the rare occasions I am able to go out.
Ronald W. Graves.
PS: As for what tests were carried out in March/April last year, I was kept in total ignorance. However, based on my recent research, and information from other Addisonians, a regular morning blood test is essential in establishing the levels of cortisol and ACTH and, indeed, a blood sample was taken in the middle of breakfast on many occasions in APH**. This was sometimes followed by other samples being taken throughout the day.
**I asked why they persisted in arriving at such an inconvenient time – “Because this is when we have to do it,” was the reply, which I interpreted as the time the blood had to be drawn – around 08.00. This fits the Addison’s diagnostic criteria, as did the other blood tests throughout the day. (Source: ADSHG, Living With Addison’s Disease: An Owner’s Manual.)
At the time I was put on i-v steroids, among other substances, but as the process blew out two veins in two attempts, I refused any further attempts and was switched to high-dose oral steroids and, eventually, titrated down to the maintenance dose I am still on today.
I assume from all that, and from my symptoms on admission, that the diagnosis of Addison’s is confirmed beyond doubt.