The Addison’s Chronicles – Part 10…

So here I am, happy in the belief that I have my Addison’s under control. I don’t have it licked, you never do, it’s a gift that keeps on giving, but I thought I’d reached an accommodation with it.

I couldn’t have been more wrong.

This past week my nausea has returned, as severe as ever it was. No idea why – that’s something I really did think I had licked, but no. Rummaging through my Addie’s documentation, of which there is a hell of a lot, I discover that “Dizziness, headache, stomach ache, extreme weakness, chills, fever, confusion, nausea and vomiting are typical signs of impending adrenal crisis.”

Of that list, only fever has been absent. I was going to say vomiting, too, then I remembered the state of my PJs – I’ve obviously been puking in my sleep. Not a lot, but even a little is dangerous.

As for confusion, well, I’ve found myself more than once this past week, sitting in front of this infernal machine and wondering what the hell I did next to make it work – something I should know in my sleep. And today is laundry day – or it would have been if I hadn’t completely forgotten.

So, I’m screwed, and teetering on the edge of a full-blown Addie’s meltdown, for which I took the recommended additional 20mg of Hydro.

And now I need to write to my GP again, to keep him in the loop. I have to remind him of the nature of Addison’s and my almost constant need to take additional doses of Hydro because of the parlous state of my health, which keeps me almost perpetually stressed. With Addie’s that’s seriously bad news, as is the return, a few nights ago, of angina to the playing fields of fuckuppery. Shorter version, all of that means six month’s supply of Hydrocortisone is NOT going to last for six months. It’ll only do so at the absolute minimum maintenance dose of 30mg a day. I need way more than that.

When I take extra Hydro, as I have for the fortnight that ended last Saturday, while taking Doxycycline for my infected leg ulcer** (a double dose, 30mg x 2), I’ve taken 10mg from my prescribed stock plus 20mg from my own personal stock.

**Did the job, by the way, though I was surprised, when I sent the message that I needed Doxy (a broad-spectrum antibiotic), to get it – has my GP finally realised that I actually do know what I’m talking about? It would make my life very much easier if that were the case.

I finally realised, though, that by effectively subsidising the NHS in this way (I already buy my own Thyroxine and Amoxycillin), I’m making a rod for my own back, especially with the Hydro.

Firstly, my GP can’t see just how much Hydro I actually need to survive (more than he thinks, I suspect, and that’s abiding strictly by the NICE guidelines) and, secondly, the time might come – and who can tell when with this incompetent and corrupt government – when I can’t afford to buy my own drugs.

So I need to bring my GP up to speed, get an assurance that he will prescribe what I actually need, and then stop taking my own Hydro, keeping what I have left for emergencies.

Which reminds me, I had a similar conversation with another doctor some years ago – GPs seem not to grasp the fact that, say, 28 day’s worth of tablets or capsules might not last 28 days. For a start, I often find tablets are broken inside their blister packs, or by the action of popping them out and some –especially if they’re enteric coated – are dangerous in that condition. Similarly, capsules can split, spilling their contents.

Some tablets, uncoated or film-coated, are safe enough as long as they haven’t lost any of their substance, creating a sub-therapeutic dose, or aren’t so smashed you just can’t tell if they’re all there. For some modified release capsules, though, the actual capsule sometimes plays a part in that process, as well as the contents, so are best avoided if damaged.

And even if they survive their packaging, they can be dropped, especially by me as my right hand doesn’t work too well, and either fall in the sink if I’m getting tap water, or roll under the fridge-freezer if I’m getting chilled water (never take meds with tea or coffee, or any other hot drink – they dissolve too quickly). And some I can see hit the floor – but then they appear to flip into an alternate universe, because I sure as hell never see them again!

So I explained this to the GP and he said, “You know, that’s never occurred to me.” Why not, ffs? It’s so goddamned obvious it should be GP Training 101.

The return of angina is likely to be my biggest cause of stress right now, and I really need a cardiologist who will run tests that aren’t dangerous to me, rather than the cheaper but risky ones that I’ve been offered in the past, and refused. There is no way in hell, for example, that I will submit to a double catheterisation of my heart, which involves crossing my calcified aortic valve with one of the catheters, which, in turn, gives it a 24% risk of causing a stroke.

There is a safe option, using an MRI scanner plus an injected contrast medium, which they won’t do. I’ve also been told, though I don’t know if it’s true, that they can see what they need to see via an echocardiogram, of which, to date, I’ve had 4, but no feedback from any of them.

There are four potential causes of the angina. Oxygen deficiency, first diagnosed at Stockport Infirmary in 1986, is possible, but given my minimal level of activity these days, that seems unlikely. The culprit is either COPD, heart failure, or aortic valve calcification and stenosis.

All three are progressive and actively getting worse, and either of the last two will kill me sooner rather than later. Possibly both will as they interact.

My COPD isn’t helping either, though it has some way to go before reaching end-stage and being considered life-threatening. Fact is, though, it imposes a considerable load on my heart and pulmonary circulation, to the serious detriment of the other two conditions.

It’s a no-win situation.

11 thoughts on “The Addison’s Chronicles – Part 10…

    • About 12 years ago I lost most of my body and facial hair, had ridged fingernails, no energy, piled on weight – all the symptoms of an under-active thyroid. But, because in the UK being anywhere on the thyroid function scale counts as normal, and gets no treatment, I was stuck with it (in the US they believe higher up the scale is better and medicate accordingly – I agree, as long as you don’t tip over into hyperactivity). So I did some research, bought my own Thyroxine, hair grew back, lost weight, lots of energy – never looked back. Still take it.

      I stop it occasionally, to see if the symptoms return, to make sure I still need it – they always do.

      • The worst I’ve ever been was when it was originally diagnosed. My hair started falling out and what remained was a horrible frizzy texture. Weight gain and an impossible lethargy which I thought was just laziness eventually lend me to the GP and fortunately was diagnosed immediately. My mother also had an under active thyroid and so as not to be left out, my father decided have the same. Theirs was for different reasons. Mine is a consequence of the LcSSc. Isn’t life jolly. Hope you sleep well tonight. x

  1. I find myself, increasingly, trying to decide whether it’s worth the effort of carrying on. I’m finding it harder and harder to sustain a valid argument in favour.

  2. Hi Ron, having so many different complaints, sure does make for a complicated life. but can i ask a question? you say you have had 4 echocardiograms…. can you tell me in what position did they put you to carry these out? i had one. was put on my left side. then report said was not an easy process to do on me. surely, if your heart is on the left side of your body, laying on left side WOULD make it difficult to do. or is that the normal position to be laid in for it?

    • The first was done largely on my left side, mostly unsupported and bloody uncomfortable, two were done sitting in a hospital bed, and the last one sitting upright in a wheelchair.

      Some operators have favourite positions, I’m sure, but I don’t think position is crucial.

      Bottom line, though – it’s your choice. If a position is uncomfortable, or painful, just say sorry, can’t do that. They’ll find another way. Whatever obstacle you put up you can be sure they’ve met it before and worked around it. And they can do it again for you.

      The worst thing you can do is just seem doubtful – you have to be assertive. Mean what you say, and stick to it.

      You heart isn’t on the left, by the way. It’s pretty much in the centre – but it’s not straight, it’s tilted to the left, in that the top is a bit left of the centre-line.

      And everyone’s heart is different. When I had my angiogram they couldn’t locate one of my coronary arteries, so they prepared to flood the aorta with contrast medium, in the hope that pumping in half a pint of the stuff would cause it to seep into the missing artery and show it up.

      Then they found it, while they were arguing about whether so much contrast medium replacing blood would cause a coronary.

      And then they had another argument – and all this time I’m lying there on the table – about who was going to pay for the wasted contrast medium!

      • Thanks, so no real reason then why the letter i have a copy of here should state that that test was inconclusive.(at my follow up appointment, we,my daughter and I, were told it had shown no evidence of having had a heart attack,no scarring or anything. that it had been a warning only.) now the docs at my surgery, who were not there at the time, 8 years ago nearly, are trying to say i DID have one.

        • It’s possible to have a “proper” coronary without it causing permanent damage, if it was relatively minor. Still a warning worth heeding though. You should have been sent for an angiogram, though, to find out the degree of blockage in your coronary arteries.

          In 1996 I was packed off to APH by my GP with a classic coronary. Admitted via A&E with a classic coronary – all the way along the line, everybody said coronary. Spent two weeks in the coronary ward watching everyone else bar me being sent of for echos.

          After a week I got a friend to bring my wheelchair in and spent a couple of hours a day trundling round the hospital, getting some exercise (I hate bed rest – I lose muscle so fast I can almost see it vanish).

          After two weeks I was told it had been angina and I was fine!

          Problems – 1, no cardiologist would confuse angina with a coronary; 2, an ECG would give a clear answer; 3, it took me six months to fully recover – angina is over almost immediately the pain stops. At most recovery takes hours. And 4, why keep me in for two weeks if it’s just angina?

          In 2011 an ECG picked up damage from an earlier coronary event, which must have been from 1996 (I have a copy of that). So, basically, I was lied to and I did have a coronary. But why lie? And if it wasn’t a lie, it was terrifying incompetence.

          Bottom line – doctors are fallible. Also idiots! If it felt like a coronary, and behaved like a coronary, odds are it really was a coronary, especially if it took you time to recover from it.

        • Another thought. I can’t see how an echo can be inconclusive, given the amount of detail in a colour Doppler scan. It might show nothing wrong but it will always give an answer, whether it’s one you want or not. So I’m told, anyway.

  3. 1. it didnt feel like a coronary. 2. i had no chest pain 3 only pain i had was a nano second of a sharp pain on left side of my neck taking up less than half inch.4. other patients in docs waiting room kept asking if i was ok. i wasnt but couldnt have told anyone why.i just felt weird.
    5 i kept burping a lot. which the GP was worried about but as i often have spasms like that i didnt think anything of it but the GP that saw me did.
    6.they wanted me to have an angiogram “just to rule out anything nasty” after telling me it was just a warning,,, but as i suffer from spondylosis, get leg cramps frequently and have done so since i was 11 years old i hardly think that will be down to clogged arteries., and have problems with my breathing as well.i cannot lay flat on my back for more than a few minutes at a time my back is too painful (was told they wouldnt be able to give me pain killers..then later that they could. by this time i had been overdozed on thyroxin and had 2 injections into my stomach of which there was no record. plus being told not to walk when i should. no way was i going to trust them to give me painkillers. my thoughts were yes.yu get me in a position where i can do nothing then tell me yu cant give me anything. so no it didnt it is i get panic attacks if i have to lay flat and cant breath.. i was kept in 6 days mainly for 2 reasons. my peak flow rate was down to 190-200 and they wanted to get it higher before letting me go home. 2 they were trying to get an apointment to have heart scan done before i went home. but couldnt. so at 6 days they sent me home and i had to go back later for it doing as an out patient. it took longer to recover from the side effects of the meds they gave me, like swollen legs and feet, being told not to walk at all if i could help it to being told after about 6 weeks that i SHOULD have been walking.just putting legs up when at home.(swollen legs caused by diltiazem) aspirin causing breathing to get so bad i could barely walk more than 2-3 steps.
    so…one conclusion at the time it happened or soon after. now another one completely opposite. and far too many my liking. and nope.i aint had to use my heart spray once. in all these 7 years.

    • They can’t do an angiogram with – well – anything in your system if it might affect the outcome, which rules out most drugs. I have a needle phobia, which the thought of several feet of wire followed by the same length of plastic tube did nothing to improve. The consultant promised me a sedative.

      I didn’t get one.

      When I asked why his colleague said drugs weren’t permitted.

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