Saturday, July 18, 2009

Still anaemic

.
Nearly a year ago, it was discovered I have mutant genes (see Genotype Compound Heterozygote) and therefore haemochromatosis, which is a condition whereby over time you accumulate too much iron in your system.

Despite initial optimism at the idea I might finally have found a reason for my CFS (Chronic Fatigue Syndrome), it turned out to be coincidental rather than causal.

There is no cure for haemochromatosis, only management by periodic blood letting. Several centuries of medical advances and it's still one of the few condidions where leeches would probably help. These days, however, they just stick a needle the size of a scaffolding pipe in your arm and drain off a pint at a time.

Due to assumptions and lack of appropriate communication, back in March, after 6 months of fortnightly visits to a vampire, it was discovered I'd had too much blood taken and was now anaemic (see Iron Levels).

As my body naturally absorbs iron at a faster rate than the rest of you mere mortals, it was considered giving me iron supplements would be counter-productive, but I should return in 4 months to have my levels checked again.

4 months have now passed. I was in last Monday to have blood taken to test, and this morning I received a letter telling me I'm still anaemic and to have return for another test in 3 or 4 months from now.

Although I now have no idea how much of my tiredness is due to being anaemic and how much is still the underlying CFS, which will still be there even when my iron levels are normal again, I must admit a certain relief and not needing any more drainpipe sized needles thrust into my veins for a wee while longer.




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26 comments:

Dave King said...

I have only just discovered this fine blog of yours (thanks to Hope's award to you), but intend to return in due course.
As to the subject of this post, the things that stymie modern medicine often seems quite as amazing as the things that it can do. Your case being one such. I can't believe that this cannot be managed satisfactorily. I feel sure it will be - let's hope soon.

the broken down barman said...

I suppose the worry or unknowing will also be playing a heavy part itself. in a way, has it maybe helped you? you seem to be much happier now youve had to slow down, or maybe it has put things into a different perspective. or maybe im just talking rubbish!!

Jimmy Bastard said...

There's already been a fair amount of stress in your life Kim, and I am aware of just how dehabilitating CFS can be. At the same time I am appalled at the lack of medical diagnosis, and disappointed that the Scottish NHS appear to need a swift kick in the arse.

You're tough though.. you'll find a way through.

hope said...

Are you allowed to bring garlic and a wooden stake when you see the Doc? :0

Seriously, I'm sorry you have to go through all of this but I'm glad you don't have to make any deposits to the blood bank.

They can put a man on the moon and yet the oddest things seem to baffle scientific types. Feel better fast!

hope said...
This comment has been removed by the author.
Charlie said...

I bet our American doctors can out-stupid your NHS doctors on the diagnosis-o-meter.

Eryl Shields said...

Echoing Dave King (second paragraph, obviously), and the broken down barman: unknowing's a bastard.

There was an interesting article on CFS in the Observer magazine last weekend: it's becoming quite common, apparently.

Word Verification is, mednei...

amy flege said...

ewwww i hate needles!!!

Z said...

I find it astonishing that your blood isn't routinely checked every time you have had it removed. I suppose that would be too straightforward. Anyway, hope it stabilises soon - that is, that it returns to its correct levels but doesn't go too high for a bit.

hope said...

Sorry...my computer stuttered, so I removed the second post.

[Okay, my word is UNDER]

mapstew said...

Ill health is a bastard!

I wish you good times my friend.

Good Times.

PI said...

Bloody 'ell love you have been mucked about. I can only hope your blood - wrested from you - has been put to good use - or is there some ridiculous reason why this can't be done?
Anaemia - I would have thought would contribute to your general exhaustion and I don't think the B.D,barman is talking rubbish. You do seem happier and that makes me glad and optimistic.
W.V, Prodlers.

Kim Ayres said...

Dave - welcome to my ramblings, and thank you for taking the time to comment :) I'd like to think things will work out, but to be honest, I think the doctor's just written me off.

BD Barman - the not knowing is always more of a strain, but I'm a bit more resigned to it. I am in a lighter mood these days, but as I said a couple of posts ago in Charlie Says..., as well as finally getting a bit of a summer, having a new focus for the future through my photography business has made a huge difference.

Jimmy - as you know well Jimmy, we find a way because we have to find a way. There are times when I wish I had the funds to go private though.

Hope - the blood doesn't go to the blood bank. Instead it's just disposed of as biohazardous waste - see my post Blood Disposal

Charlie - and I bet they're better paid for it too :)

Eryl - almost everyone I've ever mentioned it to seems to know someone close who suffers from ME/CFS. Fortunately it means there are less people looking at me like I've just said I suffer from "Lazy Bastard Syndrome", which is one of the worst aspects of it.

Amy - can't say I blame you :)

Z - the specialist said "Take a pint every 2 weeks and I'll see him again in 6 months", so that's what the doctor did. If the specialist had just said "and preiodically check his iron levels," rather than just assuming it was so obvious he didn't need to mention it...

Mapstew - thank you :)

Pat - unfortunately the blood isn't put to good use (see my reply to Hope above), and I am generally in a better place (see my answer to BD Barman above). And Prodlers sounds like a brilliant word :)

Jessie said...

so... I'm glad the medical community is doing their part in keeping your iron levels regulated... ummm, yeah... anyway, on a side note - have you been craving ice? They say that if you find yourself chomping ice that your body is anaemic - just using you as my own little side science experiment...

the broken down barman said...

but seriously, how cool is it to be able to tell people youve got mutant genes!!! they probably expect you to fly or burn things.....

LegalMist said...

Sorry to hear you're still suffering from low iron, but happy for you that you get to avoid those needles. I'm not sure I could take all that poking & sticking & prodding, but I guess we all do what we have to do, to get through tough times. Hang in there!

Sarah said...

iron suppliments are no good either.

(constipation)

i won't go further. suffice to say that i have to take them. :(

i wish you could visit a real life Dr. House - to see what IS the cause of your CFS.

Kim Ayres said...

Jessie - I can't say I've ever craved ice, except when overheating

BD Barman - I thought this, but people are less impressed when I tell I have to face magnetic north to go to the toilet, otherwise it comes out sideways...

Legalmist - the problem with "hang in there" is it implies there will come a time when it will pass. Unfortunately this appears to be a lifelong thing

Sarah - Unfortunately people like Dr House don't seem to exist around here.

Kanani said...

Seems to me that a leech would be more subtle in terms of the amount and rate that was coming out!

Sorry about all the medical issues --I can only imagine just the physical effort to go take care of things, plus the stress is exhausting.

savannah said...

this is one of those times (for me anyway) where the irish sigh is the perfect response, sugar! but seriously, i do wonder why if so many people seem to have this problem, why more research isn't being done. xoxoxo

Fat Lazy Guy said...

Bloody hell, mate! Don't know what to say. The universe seems to love messing you about.

Mary Witzl said...

I can't help but believe that at some point, they'll figure it all out, Kim.

And now, you've just reminded me: it's time to give blood. Wonder if there's anyone around with one of those hose-pipe needles?

Kim Ayres said...

Kanani - I wonder how easy it would be to set uop my own leech farm...

Savannah - because most people will end up on long term anti-depressants, so it makes far more financial sense for the companies to invest in long term maintenance products than in cures

FLG - it's nothing new - this is just an update :)

Mary - I really wouldn't feel so bad if someone was able to benefit from my blood.

Kanani said...

Ah, leeches. My husband still uses them in operations. Nothing controls the bleeding more subtlety than a leech. They're "medical grade" leeches, and so...well, if you got a few you'd have to name them!

the broken down barman said...

really got me puzzled now!!

Kim Ayres said...

Too much iron - magnetic north - never mind...