The Addison’s Chronicles – Part 6…

Yes, I know part 5 was only two days ago, but it’s a steep learning curve and new stuff to share comes along pretty quickly (and bear in mind that even though you might know this, there will be someone reading it who doesn’t – and sharing information maximises its value).

So, what do I know today that I didn’t know on Saturday?

For openers, my morning Hydro doesn’t remain in my system long. Diuretics and Addison’s are a poor mix, though the reason why isn’t made clear, but as I pee for Britain (an absurdly precise 350ml every 15-20 minutes once I’ve taken my Furosemide), I think the reason is that peeing flushes the Hydro from my system.

I can’t find any direct evidence, but there is a urine test for checking cortisol levels so, logically, if I can excrete naturally-produced cortisol in my urine, there is no reason why I shouldn’t excrete Hydro. If that is the case – and it’s easy enough to check using the same test – then equally logically, while taking diuretics I need a higher base level of Hydro.

Furosemide also causes me to excrete excessive potassium, with dramatic and unpleasant effects on my heart (tachycardia and an extremely erratic heartbeat), so I supplement with potassium, even though that’s not recommended in Addison’s. So far it’s done me no harm.

Not taking Furosemide, by the way, isn’t an option, I have heart failure. And, related, Lymphoedema.

Also, Addison’s can cause multi-vitamin and mineral deficiencies, particularly D, C, B6, B12, zinc, magnesium, and a couple of others I’ve forgotten because I can’t find the references I need (they’re scattered across multiple documents). Nor can I recall whether it’s Addison’s per se, or the Hydro, that’s the cause. Doesn’t really matter, though – the deficiency still needs treating and, luckily, I already take all these as part of my M.E. support and, in the case of D, because I’m housebound.

If, like me, you are chronically sick, and housebound as a result, then you’ll need to supplement with vitamin D3. If you get it on prescription you’ll probably get plain D (D1). It’s important that you get D3 for maximum bio-availability (this is also the version produced by the action of sunlight on your skin – which you won’t be getting).

You’ll need calcium, too, and it should always be accompanied by D3 to maximise absorption.

Steroids can cause loss of bone mass/calcium in both men and women – and of all ages – don’t make the basic error of thinking osteoporosis is your granny’s problem – it can be yours, too, at any age and either gender.

I have a 250g tub of cottage cheese for lunch most days (usually with sweet chilli sauce), and I drink milk. Oily fish, cheese in all forms but harder is higher, are the best dietary sources of calcium, but absorption from food is modest, at between 20% and 30%. I don’t, as I said in my last post, eat as much hard cheese as I used to, so that will have to change, and today my nurses suggested I get my calcium levels checked.

Which reminded me that when I was in hospital I was fed a calcium supplement, Calcichew which, frankly, is disgusting – it fills your mouth with sticky foam and I was told that most patients refused it – as did I, eventually. However, I have an unopened container of the stuff, so I’ll give it another try.

Oh, one last thought. A Thiamine supplement was foisted upon me by the hospital, without explanation, April last year. One thing I have established, though, is that it has no function in Addison’s so, for now, it remains a mystery.

If you look for information online, search for it with and without the terminal “e”. It’s also listed as vitamin B1 and Aneurine (also with and without the terminal “e”.

I’ve just had another look online and found this, on WebMD:-

Preventing kidney disease in people with type 2 diabetes. Developing research shows that taking high-dose thiamine (100 mg three times daily) for three months significantly decreases the amount of albumin in the urine in people with type 2 diabetes.

You might recall that my consultant, in March-April last year, told me my system was flooded with albumin, it was going to kill me, and there was no solution.

Clearly, it hasn’t killed me (my personal view is that the guy is a fruitcake – it’s the same unhinged tosser who was obsessed with colon cancer which, as it turned out, I didn’t have), and I don’t have any form of diabetes, either (I check my blood glucose daily), so WTF is it for, as 100mg 3 times a day is exactly what I’m taking, and have been for over a year.