Ferritin downer 2

Posted by @ 10:36 pm on Friday 21st October, 2016.

This last two days this whole affair has become a lot more bizarre...

Yesterday I attended my monthly out-patient consultation at LRI. Good basic blood results, the Hb had climbed back to 148, so no anaemia due to the first venesection. Curiously, I was given no result for ferritin, which I thought was strange as that's the only thing they are actively treating at the moment. The consultant was oddly reluctant to discuss it, so naturally I pressed the matter 🙂

He said that there wouldn't be much effect after just one venesection and that they would check it after 6 or so of them. Not good enough, I said, telling him of the grief that I would suffer when SWMBO asked for the non-existent test-result, and that we weren't going to be happy waiting about 30 weeks to find out if the procedures were working. After me threatening to give SWMBO his email address he relented and said that they would do a test at the next monthly consultation.

I told him again that his "6 weekly" instruction on the venesection referral form had been "interpreted" by me and by LGH as "one a week for 6 weeks" and that the second "bleed" was provisionally booked for today (21st October), 11 days after the first one. He said that he had intended it to mean "1 every 6 weeks", I told him that if that was what he meant, he should have written that instead. I told him that I felt fine, and pointed out that according to his own results my Hb had recovered within only 10 days, so there was no sign of venesection-induced anaemia. Grudgingly he said that "1 every 4 weeks" would do, and then after a bit of muttering and keyboard-mashing he changed that to "1 every 3 weeks". I asked if he wanted me to cancel the provisional for today but he didn't say yea or nay.

So today I made the executive decision and went to LGH for the second bleed.

As previously reported, the first venesection was done on 10th October. On that day, before they drew the blood, they took a mandatory sample so that they could measure the ferritin (yeah, it's not rocket-science) and the Hb. Today I got the result of that test...

Ferritin: 998 × 10-6 g/L

So it had gone down by 677 × 10-6 g/L with no intervention whatsoever between 22nd September and 10th October... just 18 days.

And nobody has yet been able to explain how or why.

I suspect that at least one of the test results is wrong. That, or at least one of the test results is someone else's result. Don't snigger - it's happened to me at least twice this year. I know that I'm often over-cynical, but either scenario might explain the consultant's reluctance to disclose a ferritin result yesterday.

Regardless, LGH proceeded to take another pre-venesection sample and hooked me up to a drain-bag. While that was going on they made me another appointment for 6 weeks hence. After I queried that, the Ward Sister quizzed me regarding the confusing "6 weekly" thing. When I told her that I'd discussed it again with the consultant and that he'd clarified it... and then changed it... and then changed it again, she said that she wouldn't sanction any more bookings for me until the whole sorry mess was sorted out officially and to her satisfaction. She was on the blower to Haematology in seconds flat.

Eventually she returned. 1 every 3 weeks. Official. So now I have 2 appointments at 3-week intervals.

Sorted. But it shouldn't have taken over 4 weeks to sort out and they shouldn't have used me as a go-between.

It'll be another 3 weeks until I discover the ferritin level from today's pre-venesection sample at LGH, and 4 weeks for the ferritin level from the next out-patient consultation at LRI. Those results might just depend on which way the wind was blowing, what colour socks I was wearing and which other patient's tests were being done at the same time.

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7 Responses to “Ferritin downer 2”

  1. alan.sloman says:

    If it wasn't so important you would giggle.
    These bastards need a damn good kick up the arse, Stef. And I know just the man to do it.
    Carry on, Sir.

  2. Glen Rayner says:

    You should extend your media empire beyond this blog and turn it into a book.............film...............sitcom....farce.

  3. BG! says:

    Originally Posted By alan.sloman
    If it wasn't so important you would giggle.

    To be fair, I look forward to this sort of thing, it's a tad like Forrest Gump's box of chocolates, we never know what we're gonna get. And after I've had a good old-fashioned moan about getting the coffee-creme, there's always a good laugh to be had at the expense of those who should know better.

    Originally Posted By alan.sloman
    These bastards need a damn good kick up the arse, Stef. And I know just the man to do it.

    That won't be me. I can't change this from the outside. The only way they might sit up and take notice is if one of them has to experience the inefficiencies and shortcomings of the system him/herself.

    You can beat the disease, but you can't beat the system.

    To paraphrase Denethor in the fifth LOTR book: "For a little space you may triumph on the field, for a day. But against the Power that now arises in the East Midlands NHS there is no victory."

  4. BG! says:

    @Glen Rayner
    farce
    noun: farce; plural noun: farces
    a comic dramatic work using buffoonery and horseplay and typically including crude characterization and ludicrously improbable situations.

    Yep, that's about right.

    It's a strange coincidence that "farce" rhymes with "arse".

  5. Chris Clarke says:

    You know sometimes, it would be really good if they started Stef's consultation with the words 'We are really sorry, there seems to have been a mistake. We'll try to work out how it happened.' or 'To be honest we don't understand this and can't really explain it but we have some good news...' I told Stef earlier this year when he was in hospital that to me, at times, it seemed to be just his intellect and stubbornness that was keeping him alive. Thankfully things are not so critical now, but the pattern of him having to question what he is told does continue.
    The medical staff are fantastic and we owe them his life, but if they could just admit that they are human and don't always get it 100% right or that the system(s) sometimes go wrong, then in my eyes they would be even better. Are they really that afraid of legal action, even for minor mistakes?

  6. BG! says:

    One of the three large Leicestershire & Rutland hospitals is slated to be closed, probably with job losses, and Leicester has three large hospitals. When there are problems nobody will want to be seen as culpable as it will affect their prospects of retention. Such problems, if they escape from under the carpet, will probably always be someone else's fault.

    Consultants have a lot to lose - https://www.bma.org.uk/advice/employment/pay/consultants-pay-england

    I like all three of my consultants, but they all seem to have such narrow horizons. I guess that being at the cutting-edge of their specialist subjects is to blame, but that's how "mad professors" are made. The real world outside the NHS doesn't seem to be part of their reality - how many times have I been told that I can't travel on an empty train because of infection-risk, or that I can consider going back to the job that I don't have, or can claim the benefits to which I am not entitled?

    I suspect that I am a different shape to their run-of-the-mill "cookie-cutter" patients.

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