Low hemoglobin but high erythrocytes count

[DariBee]

Hello 😊

I would like to ask if anyone here has experience with such a development of the disease.

I have polycythemia vera and was on interferon for almost a year but had to stop it due to mental health side effects.

Since then, it's been 2 years, I only take asprin 100mg daily.

According to the doctor, my results are still in the normal range, but I am concerned that my hemoglobin is gradually decreasing despite the fact that my erythrocytes are growing.

It is also strange that my hematocrit is decreasing, while the number of erythrocytes is increasing.

I will also mention that I have very low iron.

What can this mean? Could this be a sign of disease progression?

My doctor always just gives me a paper with the results and is very reluctant to answer my questions 🤨

Here are my results:

[ainslie]

the best advice I can offer is if poss try to find another doc who is pleased to answer your questions, that is their job of course. It’s always useful if poss to see a MPN expert even once or ideally from time to time to get a clear diagnosis and direction, the expert can then of course keep your local Haem going in the right direction

[DariBee in reply to ainslie]

Hi ainslie, I would like to but this is the only MNP specialist around. So my possibilities are limited :/

[gjh8733]

hi DariBee

Just to confirm you did not have any phlebotomies during this period? There are drops in your hematocrit that made me wonder and could drive your low iron but increased RBC

[DariBee in reply to gjh8733]

hello, no I did not have any phlebotomies, my only treatment is aspirin.. But as I am still in reproductive age I have some blood loss every month.

[hunter5582]

You are asking very reasonable and relevant questions. There is more to managing PV than keeping HCT at target.

There is not enough information to guess at what could be going on. Understanding what these numbers mean requires evaluation of all of the relevant numbers. I would wonder what your Red Cell Width Distributions (RDW) looks like amongst other things.

Suggest that you gather some basic information about the meaning of a CBC and some important relevant terms. It is important to understand the dynamics of iron metabolism and deficiency without anemia. There is more to understanding erythropoiesis than how many RBCs there are. Some terms that might be worth knowing include macrocytosis, microcytosis, anisocytosis, reticulocytes. Note that all of these terms may not be relevant but it helps to have the basic medical vocabulary. Once you have a bit more information, you can better formulate your questions.

The questions I would have would include:

1. Why is my iron so low when I am not doing venesections?

2. Why does there seem to be variance between RBCs and HCT? Does this reflect the size and quality of the RBCs?

3. Is there evidence of progression?

I would imagine that you will have other questions. Suggest you write them all down and hand the doctor a copy the next time you have an appointment. Politely insist on answers to your very reasonable questions and concerns.

Meanwhile, here is some information you may find useful.

youtube.com/watch?v=Xj_yE1p...(Not working as expected?)

Please do let us know what you learn and how you get on.

[DariBee in reply to hunter5582]

Hello Hunter, thank you for the video. I have checked my PDW and also MCV. My MCV is decreasing and PDW is increasing. I will write down the question and will insist to be answered at next appointment.

results including MCV and RDW

[hunter5582 in reply to DariBee]

Asking specifically about RDW/MCV is an excellent question. You may also want to ask about reticulocyte count.

Please do let us know what you learn.