Polycythemia and lack of iron

I was told NO iron as my hematocrit will jump therefore needing more phlebotomies which is what is actually causing the iron deficiency.

I don’t know if this is pertinent or helpful but I was diagnosed with PV/JAK2 about 6 years ago. Started Hydroxyurea and folic acid. It’s my hematocrit that signals me I need phlebotomy and now less frequently.
But, a couple of years ago the PA told me that levels looked good so “we could stop folic acid”.
Hmm. I told her I did not want to change a thing because it all seemed to work. I continued with folic acid and now, I understand it is no longer going to be covered by Medicare but I will pay for it myself.
My iron levels have never been an issue in this journey despite the fact that I was severely anemic when I was much younger.
I’m just putting folic acid out there for consideration,

Thank you for the information.

@rmegg the fatigue just shocks me sometimes. But sometimes its not there at all. I still don't get what makes one day different from the next.

Also, does anyone feel tightness across the upper abdomen?

@lindakay55. Been noticing that, ready to call oncology, upper abdomen feels "crowded". I'm wondering why they can't ultrasound the liver and pancreas periodically to monitor size. Just proding for pain every three months seems relatively primitive.

@maine yeah, I agree. Is it related to PV and if so, how?

@lindakay55 and what about the ribs sensations in the mornings when I wake up. Is that related to PV? Sometimes my ribs are a little sore. Sometimes upper, sometimes lower, always on the sides, and either side.

I don’t have that symptom but I am dry. Eyes ears etc. my feet tingle a lot.

@lindakay55. Oncology checks me for enlarged pancreas every three months. I'm on Hydroxyurea so aparently the organs work overtime to detox. My HU is in liquid form so I was unaware of side effects until I received the Xromi brand recently.

@lindakay55 Same!! I just assumed it’s falls into the bone pain category?!