Addison’s Disease – Another letter to my GP…

My GP has failed to respond to my letter of March 20 . This is my follow-up. Being tactful didn’t work, so let’s see what response the direct approach gets.

 

March 27, 2014

 

Dear Dr. Xxxxx,

This is a follow-up to my letter of March 20, as the situation remains unresolved.

I know I have Addison’s Disease, as I said, and I have to ask why I am not being treated in accordance with NICE guidelines or those of the Addison’s Clinical Advisory Panel? It’s an issue I would have raised earlier if anyone had actually told me I have Addison’s. This time last year I was told in APH I had adrenal insufficiency which, at the time, meant nothing (the hydrocortisone indicates Primary Addison’s). No further information was forthcoming either then, the other two occasions I was admitted last year, or, indeed, at all.

For the past year I have had the bare minimum of hydrocortisone tablets which leaves me zero scope when it comes to dealing with, and hopefully preventing, an Addisonian crisis. The Addison’s Clinical Advisory Panel recommends prescribing 6 months worth of hydrocortisone tablets, to ensure that the patient does not run out (and, of course, has ample for emergencies, which I do not).

I have little doubt that, had I been able to follow the NICE guidelines, my lymphoedema might well have had a less devastating effect on me than it did but, of course, I wasn’t able to.

Currently I have injured my right leg. Because of my lymphoedema, what should have been a minor injury, and merely inconvenient, has become extremely painful and disabling and, acting on the NICE guidelines I have increased my hydrocortisone appropriately, which has helped. As the skin is broken I am taking 500mg Amoxycillin t.r.d. (I have my own stock, as you know), as prophylaxis – I do not need another infection. This, however, should be supported by doubling my hydrocortisone intake. I did this for 2 days – I do not have enough to continue unless I can be sure of getting what I need. I am sure it would have helped last year, too, when I had to take quite a lot of antibiotics. And, of course, I need them to treat COPD flare-ups.

I am a member of the Addison’s Disease Self-Help Group (http://www.addisons.org.uk/index.html ), and, as recommended, I have my own injection kit – I have even arranged for scheme manager, here, to inject me should I be unable to do so myself, 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.

I live alone, as you know – should I be struck by a crisis, injecting myself is my best chance of survival – the administration of hydrocortisone, tablets or injection, is highly time-sensitive. As it is pre-mixed I believe Efcortisol is the best option, for ease of administration (the Addison’s Clinical Advisory Panel recommendation is 5 vials).

I 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.

I have, in fact, everything I need, especially information, with the exception of sufficient steroids to allow for the possibility of surviving this condition which, as I’d hope you’d be aware, is far more dangerous to me than it would be to someone who is normally fit and well.

I am at a loss, therefore, to understand why I have not had a reply to my letter of last week. And why, indeed, I have not been issued with adequate drugs – hydrocortisone in tablet and injectable forms. Their use is, after all, standard procedure in Addison’s.

This really does need resolving very quickly – with the minimal hydrocortisone I’ve been on, I could have died at any point over the past year. Given how extremely ill I’ve been, it’s probably just dumb luck that I didn’t tip over into a full-blown Addison’s crisis. I still could.

That risk still remains – it has to end.

Yours sincerely,

 

Ronald W. Graves.

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