Addison’s Disease – surviving the doctors…

I mentioned a couple of days ago that I have Addison’s Disease – totally unsuspected until a moment of clarity, rare these days, enabled me to put current medication in context with previous hospitalisation, plus the events leading up to it and to conclude that I have Addison’s. Extensive research has simply confirmed that – there is just no room for doubt. Trust me, were there room, I’d grab doubt with both hands – this is not something I am happy to have. However, my main problem is not the condition itself, but the sheer, almost unbelievable, neglect of my doctors.

Come back with me, then, to the pre-Christmas period, 2012, when I began to suffer from vomiting, diarrhoea, nausea – well this lot, really:-

  • Muscle weakness and fatigue
  • Weight loss and decreased appetite
  • Darkening of your skin (hyperpigmentation)
  • Low blood pressure, even fainting
  • Salt craving
  • Low blood sugar (hypoglycemia)
  • Nausea, diarrhea or vomiting
  • Muscle or joint pains
  • Irritability
  • Depression

What nearly killed me was the depression, which stopped me taking the rest as seriously as I should have (with hindsight I’m sure I tipped over into a full-on breakdown at some point – at least, that’s what my friends tell me – I was pretty much out of it by then).

And “decreased appetite” doesn’t even begin to address the severity of that symptom – there was nothing I could eat, almost nothing I could even put in my mouth – that didn’t trigger the gag reflex (spare me the stupid jokes, I’m not in the fucking mood, OK?).

If I did manage to eat – and even if I didn’t (never figured that out) – my evenings would be spent in the bathroom, letting go at both ends.

Eventually I lost over 31kg (I think it was more like 35, but I can’t confirm that), and had I not been overweight to begin with, I have no doubt I’d have died.

Anyway, this time last year I pitched up in hospital, having – luckily – been badgered and bullied by friends into phoning for an ambulance. There, after batteries of tests, I wound up, taking, among much else, substantial amounts of hydrocortisone** (to treat, I know now, an Addisonian Crisis, after which I moved on to a maintenance dose of 30mg a day, which I’ll have to take permanently).

**Two attempts to administer this, along with a batch of other drugs, by i-v, resulted in two blown veins and my refusal to risk a third – my first indication of what a future fuck-up i-v drugs were going to be.

I have a vague recollection of a mention, pretty much in passing, of  “adrenal insufficiency” while in hospital, but the consultant had an obsession with colon cancer, and he let nothing – not even the imparting of information, the lack of which could have killed me several times over by now – get in the way of that. And anyway, without further explanation it meant little.

You might be wondering why the hydrocortisone didn’t tip me off, but steroids have been a feature of my meds for years, for my respiratory problems, so I thought nothing of being fed more.

It reminds me of the time, in 1995 or 6, I told my GP that taking Prednisolone for a chest infection had, as a bonus, made me feel better than I had in years – was that an indication, even then, that my adrenal glands were defective? If so, it wasn’t pursued. Instead, he bitched and whined about my “abusing” steroids, and took them off my repeat list.

Yes folks, my GPs have been unhelpful for a long time.

That was then, this is now.

A little while ago, talking to a friend whose son has Addison’s, the hydrocortisone penny suddenly dropped with a resounding clang, and sent me off to the Mayo Clinic’s website in the US (the Mayo hosts one of the more reliable medical websites), from where I downloaded their Addison’s Disease file. If you click the Print link (on the right, across from Addison’s Disease, on the left, you’ll get the whole thing on one page, from where you can copy and paste it to your word processor (it’s also the source of the symptoms list, above), or just print it.

I also read the information leaflet from the hydrocortisone pack. Often these things leave a lot to be desired, but this was a mine of information and, along with the Mayo document, plus all the stuff I read online, I have no doubt that  I do have Addison’s Disease. Primary Addison’s at that, which explains why my sex drive is massively screwed up.

What it doesn’t explain is why nobody, consultant or GP, has discussed Addison’s with me at length. There is information that I need that is not just useful, it’s vital to my very survival. Skipping a day of hydrocortisone could kill me. OK, it hasn’t, but it could, so I should be sure never to run out – again! Did anyone tell me this? No, they bloody didn’t.

I am also being prescribed the bare minimum of hydro – 90 tabs a month. This leaves me no reserves to tackle even a relatively minor Addisonian Crisis, or to take extra when highly stressed, as I have been lately with repeated and extremely severe asthma attacks. If, indeed, they are asthma and not Pulmonary Oedema. The thing is, hydro not only stabilised me, it, I’m sure, prevented attacks on the nights I took it.

That’s a problem my GP needs to address, and soon – his failure to do so before now is putting me at risk. I also want a referral to an endocrinologist, as Addison’s in a normally well adult can be little more than an inconvenience. In someone like me, with my history, it could be a death sentence, so I want someone who’s an expert in the field to decide on, and prescribe, my medication.

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7 thoughts on “Addison’s Disease – surviving the doctors…

  1. Would love to say I’m dismayed at the rank criminal negligence of the medical profession but the loss of my best friend at the hands of those c***s prevents me.

  2. Why is it only when I get steroids for some other illness is it when I feel well??? Have energy and do not need to pace myself….as for the post steroid crash…back to square one

    • Worth getting checked out for Addison’s. And, of course, steroids can cause some people to experience euphoria, which might be the case with you (me, I get nothing – not even a buzz from morphine!). Still worth getting checked out though

  3. i used to have a load of energy when i was on steroids for chest infections,which ,on their own, always made me feel lethargic etc. over the years those energy side effects have dwindled. as ive got older. now i just get the other side effects of pushing my blood sugars up.which my docs refuse to take into account and have bunged me onto metformin since the last 4 lots of steroids in 4 months pushed the sugars up still further. their excuse for putting me on metformin???? cos they dont know what my bloods are doing rest of the time. i buy my own test strips cos they wont prescribe them to type 2 non insulin dependent, in spite of NICE recommending they do. i only test on a morning before breakfast. cannot afford the amount i would need to test 3-4 times a day.. they WONT know what my bloods are doing rest of the time will they if they dont give me the strips.(as i told my doc). they would rather fill you full of tablets than pay for strips which may avoid you taking tablets except maybe if you do get a chest infection and need the steroids.

    • Ah – you want logic and common sense from a GP. Good luck with that!

      Always remember – just because a doctor wants you to take something doesn’t mean you automatically should.

      In hospital they’ll dish out calcium and Vitamin D1 (the bioavailability of D1 is useless, we need D3), because some numpty at NICE thinks it’s a good idea over a certain age. But they don’t dish out Vitamin C which is essential for long-stay patients – this time last year I came out of APH with scurvy. Now there’s Vit C in my hospital bag.

      • well logic and common sense WOULD be nice but i know i aint gonna get it. only thing that bothers me is that when my ex hubby died last year one of the contributing factors was his diabetes and the fact that he hadnt taken his metformin at all.. he wasnt a really bad one as far as i can find out. same as me type 2 only,but on more metformin than i am. the whole scene these days is ridiculous though.would i get any further if i insisted on a second opinion? my lot seem to think a 2nd opinion has to be one of the other drs in the same practice.in my experience during my nursing years , a 2nd opinion was always a specialist in that particular subject, how times have changed.

        • When I asked for a second opinion (on my heart failure), I specified “a second opinion from a consultant”. And that’s what it should always be – an opinion from someone more highly qualified, otherwise what’s the point? Asking his mate in the next room simply isn’t acceptable.

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