My last letter to my GP re Addison’s Disease…

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 ( ), 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.

Yours sincerely,


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.

One thought on “My last letter to my GP re Addison’s Disease…

  1. GP has sent script for injectable hydro to pharmacy – reception phoned today to tell me. Just need my hypo kit now.. He seems to be taking this very seriously – just how much trouble am I in?

Comments are closed.