More ferritin woes...
After losing the first referral form asking for a series of venesections to be started within 2 weeks of 22nd September, LRI raised a replacement on October 4th. On the 7th of October the nice nurse where they do the blood-letting (Ward 1 LGH) called me and we had a chat about it. She thought that I had raised Hb and needed it reducing, I had to tell her that my Hb was fine and that I need the ferritin (FT) reducing without reducing the Hb to a level where I would become anaemic. She asked me what my FT level was and was mildly taken aback when I told her "1675". She said that the info wasn't clear regarding the frequency and number of treatments - I remember the consultant writing "6 weekly"* on the original and told him at the time that I thought it was a tad vague. Clearly the info on the replacement referral form also leaves a lot to be desired.
That first session took place today, so it was late.
According to LGH each bleed should reduce the ferritin by 30-50 × 10-6 g/L, that's for the Haemochromatosis patients that they usually deal with, they hardly ever have patients with acquired iron overload due to chemo and multiple Hb transfusions. 30-50 × 10-6 g/L isn't much compared to 1675 × 10-6 g/L, so at that rate it'll take plenty of venesections to get things fixed.
LRI want to space them out because a higher frequency means risking anaemia which would not be a good thing. Venesections remove ~9% of the Hb, and Hb levels don't recover naturally at much more than, in my case, ~10 g/L per week.
So, LRI are referring me to LGH for a series of venesections to get the FT down to ~500, a level which they consider to be OK and at which they would stop. To reduce it all the way down to the top-limit of 200 would take many more venesections. Now, depending on * below, 6 bleeds could take 6 or 36 weeks, and, say, 20 bleeds could take 20 or 120 weeks, which is probably longer than I have left! Some authorities (at LGH) insist that it should be brought down to 50 and then be controlled between 50 and 200... good luck with that 🙂
Anyway, we're one down, several more to go. LGH are hedging their bets and have made another appointment for me next week, the day after my next out-patient consultation at LRI.
* As predicted, the "6 weekly" thing was interpreted in different ways. LGH, where they do the procedure, interpreted it as once a week for 6 weeks, the Haematology Nurse Specialist at LRI thinks that the consultant intended it to mean once every 6 weeks. I find it totally bizarre, it's no way to specify a course of treatment.
This post was edited on 21st October 2016 and again on 15th January 2017 - the nice chart has been removed because it was based on incorrect information (thanks for the duff info, University Hospitals of Leicester NHS Trust!).
Don't let the bastards grind you down Sir.
🙂
@alan.sloman - No worries there, Alan. To be fair, it's me who is grinding away at their shell of over-simplicity, trying to find the kernel of reason inside.
If they think that I'm the sort that they can fob me off with flannel and bullshit, they've picked on the wrong guy.
I trust that you are well.
I'm fine & dandy, thanks Stef.
A couple of years back I had a major wobble with my white blood cell count and having spent a considerable time reading up on it I had to insist that one of the anti-rejection drugs dose should be reduced. It was initially prescribed on the average body weight of the male population...
It took a great deal of insistence on my part before the Consultant (not my usual chap) read the link I provided (to an article written by his boss) and he acquiesced. My white blood cell count then made a remarkable recovery and *all* the other results also improved.
Good luck, Sir.
🙂