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Does anyone have information on PV with a low hemoglobin/ red count

Posted by cindyem @cindyem, Jun 23, 2023

A year and a half ago, I presented a hemoglobin of 7g with no evidence of bleeding in upper or lower GI as per scans. The referral to a Hematology/ Oncology doctor revealed an iron deficient anemia. She ruled out a multitude of other diseases that could cause this. I received two separate iron infusions which brought my hemoglobin to 13.5. Since then, I’ve had two six month follow ups. My hemoglobin is now dropping a little,12.3g but I still have a reserve of iron.
The recent batch of testing revealed that I have a JAK2 mutation with a low hemoglobin, slight increase in WBCs and elevated platelets 545. I’m labeled as having PV and have been put on hydroxyurea. I haven’t found anything in the literature about anemia with PV. Guess I’m in denial.
Ironically I started my career in Hematology before I specialized in genetics. So, I understand the values and symptoms.
I can’t find any information that says you can have polycythemia with a low red count. Does anyone have info to share with me.

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Lori, Volunteer Mentor | @loribmt | Jun 24, 2023

Hi @cindyem I just read another comment you posted about having PV and anemia. From information I’ve read, anemia can be associated with PV. Here’s an excerpt from Merck Manual https://www.merckmanuals.com/professional/hematology-and-oncology/myeloproliferative-disorders/polycythemia-vera

“Iron deficiency may eventually occur because of the increased need for iron to produce RBCs. In the presence of iron deficiency of any kind, RBCs become increasingly smaller (microcytic erythrocytosis) because the red cell hemoglobin concentration (MCHC) is defended at the expense of red cell volume (mean corpuscular volume [MCV]). Although patients with iron deficiency from other causes become anemic, patients with polycythemia vera have increased RBC production and thus even when iron-deficient initially have a normal hematocrit level but an elevated red cell count and microcytic RBC indices; this combination of findings is a hallmark of polycythemia vera.”

I can sure understand your confusion though with being diagnosed with PV and yet having low hemoglobin. That’s contrary to anything I’ve read or know about Polycythemia Vera. By definition it’s a blood disorder where the body makes too many red blood cells. Keeping in mind I’m not a medical professional but my blood cancer and subsequent bone marrow transplant journey thrust me deeply into the fascinating world of blood cancers. So I spend a lot of time helping out other members with research in these diseases.

The JAK2 mutation can cause not only PV but other proliferative neoplasm disorders. https://www.verywellhealth.com/jak2-mutation-5217909

I’d be scratching my head too and wondering if I have the right diagnosis with PV. Any of the other MPNs associated with JAK2 mutations such as essential thrombocythemia (ET), and primary myelofibrosis (PMF) are all treated with Hydroxyurea so your treatment really wouldn’t change. But usually people with PV have the need for phlebotomies and have high hemoglobin and hematocrit numbers.

With your background in hematology and genetics I’m sure this isn’t computing with you. Have you thought about getting a second opinion?

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1 reply
pinkflamingo | @pinkflamingo | Jun 24, 2023

You sound similar to me, but I have a diagnosis of ET. If you have not had a bmb, I would suggest that you advocate for that to be certain.
I wish I could tell you that I had any answers with the iron. In my situation, iron supplements are contraindicated and can worsen blood issues. I deal with low hemoglobin, hematocrit, MCV, MCH, MCHC, all with completely normal iron, b12, and ferritin stores.

REPLY
cindyem | @cindyem | Jun 24, 2023
In reply to @loribmt "Hi @cindyem I just read another comment you posted about having PV and anemia. From information..." + (show)
@loribmt

Hi @cindyem I just read another comment you posted about having PV and anemia. From information I’ve read, anemia can be associated with PV. Here’s an excerpt from Merck Manual https://www.merckmanuals.com/professional/hematology-and-oncology/myeloproliferative-disorders/polycythemia-vera

“Iron deficiency may eventually occur because of the increased need for iron to produce RBCs. In the presence of iron deficiency of any kind, RBCs become increasingly smaller (microcytic erythrocytosis) because the red cell hemoglobin concentration (MCHC) is defended at the expense of red cell volume (mean corpuscular volume [MCV]). Although patients with iron deficiency from other causes become anemic, patients with polycythemia vera have increased RBC production and thus even when iron-deficient initially have a normal hematocrit level but an elevated red cell count and microcytic RBC indices; this combination of findings is a hallmark of polycythemia vera.”

I can sure understand your confusion though with being diagnosed with PV and yet having low hemoglobin. That’s contrary to anything I’ve read or know about Polycythemia Vera. By definition it’s a blood disorder where the body makes too many red blood cells. Keeping in mind I’m not a medical professional but my blood cancer and subsequent bone marrow transplant journey thrust me deeply into the fascinating world of blood cancers. So I spend a lot of time helping out other members with research in these diseases.

The JAK2 mutation can cause not only PV but other proliferative neoplasm disorders. https://www.verywellhealth.com/jak2-mutation-5217909

I’d be scratching my head too and wondering if I have the right diagnosis with PV. Any of the other MPNs associated with JAK2 mutations such as essential thrombocythemia (ET), and primary myelofibrosis (PMF) are all treated with Hydroxyurea so your treatment really wouldn’t change. But usually people with PV have the need for phlebotomies and have high hemoglobin and hematocrit numbers.

With your background in hematology and genetics I’m sure this isn’t computing with you. Have you thought about getting a second opinion?

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Thank you for the article. I have thought about a second opinion but am going to see where this first month of chemo takes me. If my hemoglobin drops below the normal range, I will see someone else.

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