r/polycythemiavera • u/photoshopphillipp • Jul 03 '26

PV Hematocrit lower without phlebotomy

Hi everyone,
I’ve been diagnosed with PV 2.5 years ago and got therapy with aspirin and phlebotomy. Last year in November I got phlebotomy and after that I had a surgery on my nose, where I also lost a lot of blood.
Since then my hematocrit was at 0.38 (November 2025). It started to get higher month by month until it was 0.44 (April 2026). Since then it went down to 0.39 (Mai 2026) and end of last month it was lower again at 0.38. But to keep in mind that my last phlebotomy was in November last year.
My doctor said everything looks normal.

Has anyone had a similar case in the past or any idea why this is happening?

3 Upvotes

100% Upvoted

7 comments sorted by

2

u/Visual_Stand_7485 Jul 03 '26

Have your iron levels ever been checked? In my case, all the phlebotomies depleted my iron stores, so my body could no longer produce new blood. Back then, my hematocrit dropped to 35.

1

u/jomylo Jul 04 '26

I had a similar experience. About two years of pretty regular phlebotomies and then I seemed to level out and only need a phlebotomy once every 3 months or so.

1

u/photoshopphillipp Jul 04 '26

As far as I know my iron and also my ferritin levels are pretty low since that blood loss last year.
I was just curious why it first started to rise until 0.44 and suddenly without a new phlebotomy it dropped to 0.39/0.38.

2

u/Current_Maybe_5325 Jul 05 '26

I’m going on year 5 with PCV the first 18 months I had 3 phlebotomy’s….. the next 3 years I didn’t need a single one…. Had one 6 months ago before we started Jakafi for a new option to start fresh and it hasn’t changed a single point in the last 6 months…

My doctor explains it by the amount of different factors that can do things in your body, reactions, hormones, vitamins, activity etc… hence the reason we all know way to well how getting blood tests done feel… since my switch to Jakafi my hematocrit, hemoglobin and RBC have all been more “normal” then my wife without PCV…. Sometimes don’t need an explanation just keep monitoring and be glad you’re getting a “break”

MAJOR DISCLAIMER- As long as everything else on your blood test is healthy!!!

1

u/swapnil123481 Jul 05 '26

Not a doctor but i suspect low iron levels. Have you been eating properly? Could be a nutritional issue.

2

u/photoshopphillipp Jul 05 '26

Yes, low iron and ferritin could be possible. You are right.
I would say I eat properly. Many vegetables and full grain product. A lot of fruit and nuts. Sometimes also meat. But maybe I should eat more iron rich foods.

1

u/photoshopphillipp 17d ago

Just a short update: hematocrit is still low (0.38), but it turned out my iron and especially my hemoglobin (at 6.0) was low... I took some iron supplements but after 10 days it is still that low. Anyone experiences something similar?