The Addison’s Chronicles – Part 5…

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

Addison’s can also render you vulnerable to extremely serious infections, as you can see, below.

(That garishly-coloured book your GP uses to look up drugs? That’s the BNF – in my view, every chronically sick person should have their own copy.)

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Source:- BNF April 2014 >6 Endocrine system >6.3 Corticosteroids >6.3.2 Glucocorticoid therapy >Cautions and contra-indications of corticosteroids

Infections.

Prolonged courses of corticosteroids increase susceptibility to infections and severity of infections; clinical presentation of infections may also be atypical. Serious infections e.g. septicaemia and tuberculosis may reach an advanced stage before being recognised, and amoebiasis or strongyloidiasis may be activated or exacerbated (exclude before initiating a corticosteroid in those at risk or with suggestive symptoms). Fungal or viral ocular infections may also be exacerbated (see also section 11.4.1).(End)

Frankly, that’s pretty damn scary given how infected my legs were last year, and it might explain why, as I’ve mentioned previously, my GP pitched up here unannounced last October to tell me that unless I agreed to go into hospital immediately, I would die, horribly, from septicaemia.

I did neither.

It’s occurred to me, while typing this, that for him to have done that, and for it to reflect so closely what the BNF says, it very strongly suggests that he knew about my Addison’s status as far back as October, and quite possibly long before. Why, then, did he not ensure that I was properly medicated according to the guidelines issued by NICE?

I’m properly medicated now, as regular readers will know, but it’s been a battle and it really should not have been. I’m seriously, arguably terminally, ill (in that at least half of what’s wrong with me is likely to kill me, and sooner rather than later –see Footnote for details if you’re new to this blog), I should NOT have to fight my fucking GP for drugs that should be issued to me as a right. Nor should I have him bitching and whining about abusing drugs when I never have and never will. FFS, I’m already taking 19 goddamned drugs – around 70 tablets and capsules a day – why the hell would I want to take more?

Getting back to the BNF, actually replacing it every 2 or 3 years works out fine for me – in my experience (I’ve had my own since 1985), even though it’s published several times a year (it used to be, anyway, now it seems to be just twice), it doesn’t actually change that fast.

I prefer the print copy to the online version. Check out Amazon, and check carefully as the prices from Marketplace vendors vary wildly. There’s never any need to pay the full price, currently No. 67, and £40 on Amazon Prime (a tenner less from others). I’d go for No. 66, at £18 (published last September), or even No. 65, which is now a year old. Try the Book Depository, too.

I did notice when I bought my last copy (No. 61, March 2011), that it’s no longer as reliable as it once was, and littered with errors which, frankly, simply is not acceptable. For example, my beta-blocker, Nebivolol, is listed as having no side effects when, in fact, it has a hell of a lot, and some of them dangerous.

See also Drugs.com a mine of information aimed at both patients and professionals. Another freebie.

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Footnote:-

For new readers, this is what’s wrong with me – in chronological order of onset. I know I’ve published this list previously, but not everyone reads every post.

Plus everything here affects, very much, how my Addison’s turns out – see sections headed NB: below.

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Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles trashed my lungs.

FMS since my late teens. Constant, bad/severe pain in shoulders/neck.

Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, but that’s increasing, and the noise is deafening.

Osteoarthritis in left hip since age 32. Massively ramped up by being struck by lightning in 1983, now widespread (right hip, both knees, elbows, hands. Feet also very badly damaged (the fatty pads, in the soles, that cushion the bones were melted – my feet literally fried – so every step since has been like walking barefoot on a shingle beach). Pain can be extreme – it NEVER lets up.

M.E. since 1985 (Dx at RLUH 1996). Also a source of intransigent pain.

COPD since 1995/6 with onset of emphysema.

Heart failure. Dx in APH in 2011, but never recorded on my file (of which I have an unredacted copy for that period). Subsequently confirmed by cardiologist, though non-cardio docs try to deny it. Motive? Dunno. Both COPD and the aortic valve problem (next), routinely cause heart failure.

Aortic valve calcification & stenosis. (Dx mid 2011).

Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary, Summer of 1986 after Peak District rescue. Letter from Stockport ignored by my then GP who refused to accept that anything was wrong with my heart, despite a massive family history of CHD (almost everyone on my mother’s side has died from, or been seriously disabled by, heart disease and/or stroke).

Bilateral Lymphoedema, present but asymptomatic since 2005. Last year severity was off the scale, massively infected and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. As do two ulcers on the verge of merging into one larger ulcer. Currently colonised by bacteria but level of pain, the smell, and suppuration more suggestive of infection – new swab sent to microbiology lab this week. There is also an injury, caused by the impact of a large, high-density polyethylene, chopping board, which refuses to heal. Both right leg. Left leg healed but fragile. Both very/extremely painful.

Addison’s Disease. March 2013, admitted to APH close to death after months of diarrhoea, vomiting and starvation (lost 35kgs) – all, I now know, symptoms of Addison’s.

Diagnosed with acute Addison’s almost immediately on admission, based on the huge amount of Hydrocortisone I was given (and with hindsight), but I was not informed at the time (nor, on subsequent admissions, was Addison’s ever mentioned or Hydrocortisone administered in accordance with NICE guidelines – that will not be allowed to happen again).

Once stable, maintenance Hydro only (30mg daily, delivered extremely erratically** while in APH both then and subsequently), until I realised what was wrong in March 2014, almost a year to the day, and having received confirmation of Addison’s agitated for treatment according to NICE , ADSHG and ACAP guidelines.

**Currently I take 20mg at 06.00, along with the rest of my meds, and 10mg at 15.00. Still experimenting, trying to find the optimum time for the second dose. Received wisdom says evening is best but, for me, noon has given the best results so far. 15.00 is a compromise.

NB: In patients who are normally well, Addison’s need be no more than an inconvenience. For those of us who are chronically sick, especially, like me, with multiple serious conditions, Addison’s can kill, especially if not properly medicated.

Indeed, in the NICE Guidelines they make it quite clear:-

What is the prognosis?

If untreated, Addison’s disease is always fatal.

It seems reasonable to assume that this applies to Addison’s which is only minimally medicated too, as mine was for over a year. Had I not been taking inhaled steroids I’d probably be dead. Indeed, the crash came when I’d reduced my inhaled steroids, which confirms the link to my satisfaction.

I first saw the endocrinologist – though he didn’t identify himself as such or tell me I had Addison’s – while still in the APH assessment ward in March last year. My GP didn’t confirm my Addison’s until March 26 this year, after I’d figured it out for myself.

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5 thoughts on “The Addison’s Chronicles – Part 5…

  1. I think it’s par for the course these days to have to fight your GP for the most basic of care. Unless you are seeking help for the big three – diabetes, blood pressure or you look like you might be easily terrified into taking statins. Then they are all over you like a rash, fighting each other to claim the funding that the “screening events” provide for the cash till.

    One other regretful normality is that no one ever reads the notes.

    • Every year I get “invitations” to attend the surgery for spirometry, heart, BP, and cholesterol checks. All of which go in the bin while I patiently wait for them to complain that I never turn up – at which point they’ll be asked to explain exactly which part of “housebound” is confusing them!

  2. I split my HC into three doses, 10 at 7am, 5 at noon, and 5 at around 4pm. Since I have started three divided doses my days seem to go smoother. Diagnosed in 2001 with secondary adrenal insuffiencey. This disease is a bitch.

    • I take 20 with my main meds at 06.00, plus 10 at 15.00. That’s the prescribed dose (primary Addison’s). Additionally, I take another 20 or 30, depending on how crap I feel, how much pain I’m in, and whether I’m taking antibiotics (which I usually am), with the second dose, which might also be moved forward. It doesn’t matter if I crash in the evening – I’d just like to get through the day.

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