I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42 which is when I get a PB. By on 9-22 I was at the doctor so I got a CBC. It was about 40 days after my phlebotomy. My hemo just emailed that he wants me to take another CBC in a week since my HCT was 36. I'm freaking out a bit. Again it could be that I did CBC too soon for my HCT to climb, which it normally does.
Ideas? Thoughts?
Hey
Any change in our normal counts can cause us concerns but ( i am assuming you a female from your name so apologies if not ) but 36% is still normal although low end normal.
I would be looking at other counts too, I don't know how long you have been having phlebotomy but what this does over time is also impact our iron levels (ferritin). So what could have happened is that your iron/ferritin has gradually reduced too over time.
This has a knock on effect because the body needs iron to produce red blood cells, so the less it can produce the lower your HCT in theory.
Doctors actually prefer PV patients to be slightly anemic/low end normal as this is obviously a better place than too high counts, i think the fact you have your PB on 42 rather than wait for it to get to top end normal would indicate that.
Hopefully this is actually a positive that your counts are keeping low which hopefully may mean less regular PB.
Obviously I dont know for sure, but it would be logical that they would no longer rise as fast if your iron levels have reduced over time.
Im sure your iron/ferritin will be on your full blood count so this would probably be something to look at.
Try not to worry, i know its not easy but i think asking for a full count again is probably a sensible step, it sounds like you are getting good care.
Paul
Hi Paul. My ferritin is almost nothing--7, I think. I also realized that I have been taking Timeline's Urolithin A for five months to keep keep my mitochondria healthy. Turns out Urolithin A can reduce inflammation, drive autophagy, and potentially inhibit Jak 2.
I'm hoping that is what has made my HCT 36.
Thanks for all the great advice and comfort.
E
My hematocrit is at 36 for a few months and my haem thinks it’s great at long as the hemoglobin level is ok.
Normal HCT level for women is 36% to 48%.
redcrossblood.org/donate-bl...
The target for women with PV is HCT<43%. You do not want HCT to get too low as that would be anemia. The thing to understand is that the goal is for you to be iron-deficient but not anemic. It is a balancing act to get things just right. Note that iron deficiency and anemia are not the same thing.
In my case we at one point overshot the mark. my HCT = 32% which is much too low for a male. I actually had to take iron tabs for a while. When things stabilized, I went for 14 months with no need for phlebotomy. My ferritin<8 for several years running with only 2 phlebotomies. I finally got to the point that the chronic iron deficiency symptoms were too bothersome. That is why I have opted for PEGylated Interferon instead of phlebotomy-only to treat the PV. Our treatment needs change over time. That is the norm for all MPNs.
For now, do not sweat the HCT 36%. That number is fine and within the target range for your PV treatment. Provided you are not experiencing any symptoms at this level, it is not something to worry about.
Do note that iron deficiency without anemia can have symptoms too.
Fatigue.
Poor work productivity.
Poor attention and memory.
Sore tongue.
Poor condition of skin, nails or hair, including hair loss.
Delayed skin wound healing.
Developmental delay.
Restless legs syndrome.
patient.info/doctor/non-ana...
PV treatment is about finding the approach that works best for you. All options come with potential side effects. You just have to find the best possible option for your own situation.
Hope that helps.
now my local Heme/onc says I have ET not PV and it matters how they treat me. 
HCT Jumped 3%. 
2nd Dose of Besremi Today
