My own fault. I asked to be put onto iron tablets as my levels were so low and I was fatigued. I had a phone call from Haematology yesterday informing me I need venesection. The caller could not give me my hematocrit, I have to wait for my letter, but it must be more than .45 when they are saying I need venesection.
I hope it doesn’t put me back to very anaemic again. Has anyone else felt they were playing “ping pong” with fatigue and too many red cells? There must be a happy medium somewhere.
Kindest regards Aime x😻😞
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Aime
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you betcha on that one. It is the classic PV tap dance. At one point I was so over-phlebotomized that my HCT=32%. Did take some iron for a few weeks but hated the adverse effects. I just ate an iron-rich diet and let my body recover on its own. The long-term iron deficiency effects (including fatigue and thrombocytosis) are part of what convinced me to switch from phlebotomy-only to PEGylated Interferon. My ferritin was typically around a 6. It has now nearly doubled. Still lower than I would like. Hoping the energy levels will return fully to normal as the iron levels creep back up closer to normal.
The venesection will drop your iron levels. that is its purpose. It is how the erythrocytosis is controlled. Hopefully the ingle venesection will not drop it by too much.
BTW - What the heck! What do you mean that the caller would not tell you your HCT. That is ridiculous! It is your information not theirs. You have a fundamental right to the information at the time your request it. You should definitely know your HCT before you proceed to a venesection.
Hi Hunter, I know I only have erythrocytosis and not PV but I still need my red cell production controlled or I will be up the creek with extra thick blood! It was an admin girl who phoned but I feel the MPN nurse should have contacted me because the first thing a person with a high hematocrit is going to ask - is how high!
This is why I still keep my private haematology line open, so if necessary I can book an appointment with him, when I don’t have faith in the nhs department.
PV can present with erythrocytosis only. Some of us also have thrombocytosis, leukocytosis, or all three. You are right about the hypervelocity issue. It raises hypertension and HCT> 45% male or 43% female raises our risk of thrombosis.
Good idea to have a private hematologist if you can't count on your local NHS docs. Having a MPN Specialist involved definitely improves you quality of care.
Thank you Hunter, I think I learn more from you than my nhs haematologist! I understood (obviously incorrectly) that because I tested negative for Jak2 and jakxeon12, I did not have PV but definitely had true Polycythaemia (without the vera) which was also known as erthrocytosis. Or am I totally wrong?
Regardless, I know it’s important not to let my blood thicken and I try and do all the right things that we have spoken about on this forum but do fall by the wayside sometimes!
There is a condition called Idiopathic Erythrocytosis. It is distinct from PV. 95% of people with PV are positive for the JAK2 mutation. Of the remaining 5%, there is a very small number of people with PV who are CALR positive. The rest are PV w/out a known driver mutation.
Per the WHO diagnostic criteria, If you are positive for erythrocytosis (elevated HGB/HCT), positive for bone marrow morphology features (see attached), and positive for subnormal EPO - then the diagnosis is PV even when you are not JAK2 positive.
If you do not meet diagnostic criteria for PV, are not positive for secondary polycythemia, then my understanding is that the diagnosis would be Idiopathic Erythrocytosis. Here are a few references. there is more if you are interested.
Interesting side note: My daughter an I are both JAK2 positive. I have PV that used to be ET. My daughter has ET that is likely moving towards PV. My son is JAK2 negative but has idiopathic erythrocytosis.
The bottom line is that you need to control for HCT regardless of the form of the erythrocytosis.
Anyone experience rising RBC upon commencement of venesections? Perhaps this is the ping pong you’re referring to…MCV goes down yet RBC climbs which counter affects the venesection. It can’t be coincidental that my RBC began rising only once I began venesections. Thanks.
Venesections should lower your RBCs. Your body cannot make RBCs without iron, which is what the venesections deplete. It can take repeated venesections to deplete your iron enough to get the therapeutic response. It is possible for the iron levels to get so low that you end up anemic. Note that iron deficiency and anemia are not the same things. It is the goal of venesections to control the erythrocytosis through iron deficiency, but not making you anemic.
Iron deficiency without anemia is the goal of PV treatment. Unfortunately, it can come with adverse effects (alopecia, thombocytosis, fatigue, difficulty concentrating). When someone with PV takes iron, the JAK2 mutation causes your body uses it all up to make more RBCs. Not much gets stores since it is all getting used up.
Treating PV with venesections is a balancing act. It can feel a bit like ping pong at times, with us being the ball. All of our treatment option have benefits and risks/adverse effects. Finding the right balance is an ongoing challenge that changes over time. Fortunately, our options really ae improving.
Thanks for the reply Hunter. See that’s what I thought as well. My RBCs had never been much over 5.3 ever and mostly in lower 5s but since I started venesections my RBCs have kept going up and were over 5.6 last time. That’s not terrible but they’re completely offsetting the MCV part of the equation. MCV and hemoglobin are going down as should be but RBCs continue to climb. Problem is I’m on the cusp of iron deficiency but my Hct continues to stay above 45 due to RBCs going in wrong direction. In other words I’m wondering how iron deficient I’m going to have to go in order to get the one side of the equation low enough so that it offsets the other.
My haem just says the RBCs going up are due to The PV, which makes sense since my body keeps producing RBCs in spite of venesections. I just thought the was the whole goal of venesections in that it helps shut off or at least slow down the RBC making process. Maybe I’m still just in the beginning phases and haven’t quite given it enough time I don’t know.
It is quite common for it to take a while to get you iron deficient enough. Your body scavenges iron from the RBCs it processes out. When you remove the RBCs with venesection, you also remove the iron.
Some people undergo weekly venesections to reach target. I had to go to every three weeks + cytoreduction for about 6 months. Then I got over-phlebotomized and ended up anemic. Keeping my HCT < 45% ended up with my Ferritin around a 6 or 7. The KISS version of PV iron metabolism is that your body is using every bit of iron to make RBCs. Not much left to store of the new iron you do take in.
It can take a while to reach target. So long as there is enough iron left, your body will continue to overproduce RBCs. Hang in there. You will reach your target.
Thanks for the reply Hunter! Makes sense. The phlebotomy treatment is a new development for me and so just learning the process. I watch everything like a hawk anyway and am always questioning everything. Seems I’m on the verge of iron deficiency (albeit minor) due to low MVC and low hemoglobin. Think I’m potentially already experiencing the sore mouth thing and yet my Hct is only at 46 due to higher RBCs offsetting the lower MCV, so part of me is thinking how low am I going to have to push the MCV if my RBCs keep going up, and what kind of side effects will that create?! I’m going the slowish route for now - every 6-8 weeks. Sounds like it’s a balancing act and a process that takes time to develop.
Not sure what, if any, other treatments you are using. All of out treatment options have potential adverse effects. Mouth sores are linked to hydroxyurea specifically. As we have been discussing, phlebotomy-induced iron deficiency without anemia can also have adverse effects. It does however reduce hyperviscosity and the risk of thrombosis. It is all a balancing act and we all present with unique MPNs and respond differently to the treatment options. That is why finding a MPN Specialist is so important for optimal care.
Thanks Hunter. Yeah I don’t know what’s going on but do know the timing coincided with vaccine, which is somewhat concerning.
Actually have two specialists and a regular hematologist and believe it or not they all have different views. Just doing phlebotomy and aspirin for now.
That is because there are not always clear answers and you simply have to try things to see what works. Starting with the most conservative and least risky approach makes sense. If it is not enough, then you can always opt for cytoreduction later. Meds like the PEGylated interferons can be very effective, but all meds come with intrinsic risks.
Hi Aime,I too have low iron levels after 5years of monthly venesections.
I have an app on to start Peg Interferon at the end of October
My Ferritin was 2,now up to 5,after taking 20mg Ferrous Sulphate (iron tabs) 3 x week.
I felt much better with the tablets,after suffering for a long time badly with usual fatigue,cracked bleeding lips,affected my teeth ,extra blurring vision/concentration(added to the usual PV symptoms of fatigue )
My haematocrit rose to .47 , 2 weeks following the previous venesection .
However ,the H/C rise had been progressing in this accelerating fashion ,before the extra iron.
I was told to stop taking iron tablets.
As Hunter explained,you should be able to access your haematocrit simply,with no fuss over the telephone.
It can be stressful for you otherwise.
Do ask consultant to correct this, via his team as soon as possible.
I keep 3 blood forms at home ,and arrange my own blood tests .
I call the ward 4 hours after the blood test,done in hospital, (where I have the venesections) and ask the receptionist for the haematocrit result.
I then arrange a venesection, if necessary ,at that time.
It took a few months to cajole/arrange this.
I am in Surrey,UK,(NHS.)
(The result for Blood tests taken at my GP surgery take 2weeks ,so I use the hospital.
I do hope you manage things more easily going forward,
I echo all Hunter says. Classic PV tap dance! That describes it beautifully. I went on Interferon to stop the dance but it took a long time to stabilise. 15 years ago haematology didn't believe I needed to know results. So I made up an excel spreadsheet and used to bring it along so I could fill in next line. I still use excel to see data. And in fact consultant does too. I found out when I queried something and she was able to show the last year's result as graph. We live and learn. Hope your counts stabilise and your fatigue lessens.
After seven years with PV I was prescribed Ferrous sulphate to correct low Ferratin. Bad mistake. After a week my haematocrit shot up from 46 to 51. Entirely the opposite aim to keep heart attacks and strokes at bay by keeping heamatocrit low .... Now back on track - lesson learnt.
Hi Aime,Sorry to read this evening of your annoyance re getting your results.
I do remember when staying in UK at our daughters farm for 2 months ,I needed to have blood tests as I have them every month in Fr.I went to the large Health Clinic where the local G Ps are.....needless to say no one knew what P V was,had a test done ,then when I rang for result was refused & told to wait for a letter.I went back to the clinic with my husband,we demanded a written result & insisted that it was given .I got it. As Hunter said we are entitled to have our personal results. Please try not to worry ,my H C T often goes up to 50 +,my very knowledgable blood cancer consultant does not do a venesection.....I have not had one since my diagnosis when my H C T was 80 +.
Then I had several over time to get the 50 level,then on to Hydrea.Sure you will be fine.
Thank you, Sally. It’s annoying because up until the last 3-4 weeks, I’ve been feeling better as far as energy goes, but since then I have been sluggish in mind and body, feeling warm, night sweats and I was suspicious that my bloods may be dodgy. But my joint flare can result in a slight rise in temp, I don’t sleep well, so I feel tired and worse through the day, so I just blamed my joints. It’s all so complicated when you have a few chronic conditions but I’ll just have to get on with it. My flu jab threw another red herring into the mix!
I had an ultrasound on Monday and my spleen is ok despite having pain in that area. I have gallstones but they would result in pain on the opposite side, I think. I’m having a phone chat with my gp tomorrow and venesection a week tomorrow, so will get sorted.
I now have to go to a community hub at my local hospital to get bloods taken for my erythrocytosis instead of my gp, who was very good at checking my results and contacting me. My results still went to my haematologist. Now all instructions, treatment re my bloods, miss out my gp, which is crazy!
Hope you are feeling better now, take care Aime x😻😻
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