It's been a couple months since my last iron infusion.
Last week, I had labs drawn, and results included:
[H] WBC (18.1), RDW (16.4), Platelets (614), Creatinine (1.04);
[L] MCH (24.1), MCHC (30.5), Iron (22);
[LL] Iron Saturation (7).
Hemoglobin was just within normal range at 11.2, and Ferritin at 23.
My doctor's accompanying note said, "Your anemia is under control right now!"
I just beg to differ. Is it, really?
Maybe I was dehydrated. I came across something online about the "Rule of 3" in anemia:
ncbi.nlm.nih.gov/pmc/articl....
Ideally, Hct = Hb x 3, and Hb = RBC x 3.
If Hct > Hb x 3, indicates decreased plasma, possibly due to dehydration.
If Hb < RBC x 3, indicates surplus of RBC with insufficient Hb... thalassemia?
Mine: Hct (36.7), Hb (11.2), RBC (4.65)
36.7 > 33.6 ... hot summer, not drinking enough water.
11.2 < 13.95 ... not enough to sweat over.
It doesn't answer all my questions about low-low iron saturation, but reminds me that I'm only a Google-doctor, and other factors are always at play. Try to trust real doctors.
Which reminds me of joke. What do you call someone who almost failed medical school?
Doctor.
Hi, I don’t know if I’m making a presumption - someone like Neil would probably know more!
I’ve a feeling your dr means your anaemia is fine for CLL, not that you’re not anaemic. If it’s relatively static and above 11 then they don’t worry.
I personally used to take iron rich water if I noticed it was making my hair fall out. My ferritin was a bit lower than that.
I’ve always had problems with anaemia and I always knew that when my hair fell out that that was the moment for me to have liver and onions once a week lol and a daily spatone (iron rich water). Hair would stop dropping out instantly.
My relationship with iron is difficult. I have always had terrible stomach pains with ordinary iron, and find iron rich water, which is absorbed better suits me personally.
My understanding is (and might be wrong) is that inflammation pushes up ferritin, so my logic is that if mine is in the low side of the scale that it’s probably lower. From what I gather a lot of people with cll have high ferritin.
The super trichologists in london always recommended keeping ferritin above 70 to maintain luscious locks, and the norm in the Uk is a very wide range.
I’m conscious that I shouldn’t eat too much red meat with CLL, and I’ve been wary of taking iron tablets without dr saying, because our odd blood results are due to cll and the bone marrow. However when my ferritin falls just below your level my fatigue is tons worse.
Finally I’m also wary of some research that suggests that iron tablets can interfere slightly with gut bacteria because high doses are needed to be absorbed. I would always follow instructions if my dr said I needed iron, but I try to only take my iron water occasionally when hair falls out, or do it naturally with food, if I haven’t been instructed by them.
Maybe someone else can give you better advice. X
But don’t be too worried by things being lower than normal as the whole set of the blood tests above were always abnormal for me lol! Good luck!
I'm feeling fairly well. I had fever/chills/sweats over the weekend, but could have been from fighting regular infections (UTI, cough). Fever left yesterday. It's sometimes hard to tell anymore how tired I am, bc after work I just always come to my bed. @@@ And you know I'm sure we're all used to feeling tired all the time. I looked up Spatone, and added to my Amazon cart to order this Friday! Never heard of it before. What I did like for iron were these grassfed beef liver capsules, seemed more gentle than tablets. But when infusions started, I was told to stop oral supps?? I need to ask about that. Neither my hema nor pcp acted concerned about those labs. It seems they only look at the hemaglobin. When I asked pcp about the low-low iron sat, she said that's just because of my history with anemia. If I were dragging myself around right now, I'd ask for infusion, but I don't feel that bad. Numbers were just shocking.
I understood that ferritin normal range is 40-250 (UK scale) so your 23 would appear to be on the low side. I don't think we should necessarily associate anaemia with our CLL, it might have a different cause which should be checked out. I'm thinking gastric issues for example. I've been told I have an iron deficiency but are not anaemic (Hb is 123) and that it isn't to do with my CLL.
I agree! I have diabetes, kidney failure, hypothyroidism, heart/lung issues, etc. which means I have like 8 specialists who only want to look at me through their own tiny scope/specialty. I've been told I need to get another colonoscopy/endoscopy, so I guess I need to ask my pcp to refer me for those. I've read about having iron deficiency without being anemic - that is interesting.
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