Ongoing anemia

[jointpain]

Hello, I am thinking if my wife has ongoing anemia due to a bleed the Drs can't or won't find. Why wait for four months to give her red blood cells when she last had RBC transfusion 4 months ago it brought her Hgb up to 115, then three months ago had iron infusion. Which didn't really increase her Hgb. It seems they always wait until her Hgb is at 90 or way below like this time nearer 80 before she is given blood. Yesterday she had 3 units of RBC and iron infusion. This takes it out of her physically for many days, let alone the fatigue she has endured for the months before. If only she had a unit of RBC every month, instead of waiting until she fits the absolutely buggered category. Do those of you that depend on RBC transfusions have this regime?

[westlieght]

Hi I’ve had transfusion every 4 monthly in 2020 HB around 9 then transfusion ,but since covid my blood HB has stabilised to around HB 10 so over 2years 3 yrs no transfusion no understanding of this , bloods will do what bloods do with out knowing ??

[lizzziep]

I was VERY anaemic for a long time despite iron tablets, iron infusion etc. I am now on weekly EPO injections which have increased my counts, I had various investigations to see if there was a bleed somewhere but nothing was found. I feel a lot better now, not nearly so tired, I don’t fall asleep all the time like I used to.

[jointpain in reply to lizzziep]

Hello Lizzie, I remember your post! A bit anyways. Did you have your ferritin checked too? My wife has low ferritin iron stores hence the ferinject infusion, and the offhand reason for it being because she is bleeding somewhere. We have asked for epo to be checked and got nowhere with the hematologist, who knows all about epo.(his words)

[lizzziep in reply to jointpain]

I can’t remember what was checked! I didn’t see a doctor from January 2020 until March 2023, during which time I got more and more anaemic, I was just getting blood taken then a phone call from the nurse to say keep taking the tablets! It was only after seeing the doctor a couple of times he said to try EPO injections, which have brought my counts up, they did go down a bit last month, mainly because the doctor prescribed the wrong dosage! I’m back at the hospital next week so I’ll see if they’ve gone back up now I’m back at the proper dose. Going to Guys on 7th November so will be interesting to see what they say. Hope you can get your wife’s anaemia solved.

[Cja1956]

Most places have a protocol for infusions. I think it’s anything under 8. I’ve never been under 8 so I’ve never had an infusion. I do get EPO injections every 2 to 3 weeks when my hemoglobin is below 10.2 which is pretty much on a regular basis.

[Bullace]

Hello I have primary myelofibrosis and am anaemic all the time. At the moment I'm having regular blood transfusions every 4 weeks and this does help, but by the 4th week, I'm very tired and all walking feels like wading through treacle. I'm also on meds that make you anaemic. Iron hasn't been mentioned for me. I don't know if this helps you. I see an MPN specialist every 6 weeks so am pretty well cared for. Hilary

[Mirabellegage]

Worth addressing with the specialist but the reason why so many of us are anemic is not necessarily because we are bleeding somewhere but because our blood cells that we create are sub-optimal and seen as damaged and are therefore filtered out too soon by the spleen. I was originally investigated for an internal bleed due to high NRBC and then high reticulated blood count before they found my enlarged spleen and I then had a PMF diagnosis. Fortunately my levels hover just over 10 so no transfusion needed. As there is a lot of stress on my bone marrow to keep making blood and it’s clearly rubbish at it, I do use oral supplement with B vitamins , D, magnesium and sometimes iron (care not to have too high ferritin).

[jointpain in reply to Mirabellegage]

Thank you all for your replies, though we ask for the blood test results, they are often not complete. Did get one this year which said there were odd shaped and fragments of red blood cells, which may point to what you are saying Mirabelle. We are not sure how her damaged or life expired blood cells are removed, as she doesn't have a spleen! I just wish we had all the information, and questions answered by the consultant.