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!).