I have a diagnosis of polycyhthemia which I have recently started having venesections for (2 since April). After my second one I became really iron deficient so have been taking ferrous fumerate tablets for almost 2 months.
My haematologist seemed really pleased about this, as the iron deficiency would stop my red blood counts going up. At the moment he hasn't set blood limits for the venesections as he wants to do a bone marrow biopsy in a few weeks (:s) and also to get an idea of how my blood counts link to my symptoms of tiredness etc.
I'm feeling very tired and unfocused again now but for me iron deficiency and high Rb counts feel quite similar so I don't know whether to go to the hospital for a venesection or not.
So I guess my questions are has anyone else struggled with iron deficiency after venesections?
And also how do you manage the responsibility of when to have a venesection or not or to check your blood counts?
I'm feeling a bit overwhelmed with trying to make this decision and am still relatively new to this.
Thanks in advance for any advice!
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Elcee253
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Hi, know how you feel. Your haem should be able to assess roughly how often you need a blood count done and arrange this either at his outpatient's or with your GP, but it's difficult at the start. You could suggest that he gives you a few spare blood count forms that u can take along to your GP and get a check if you are worried - that's what I used to do.
I also became very anemic after repeated venesections to bring my haematocrit under control. I felt dreadful - extremely tired and quite depressed too. There was also the problem that the anemia was causing my platelets to rise to almost 1000 from around 600. My haematologist decided to cautiously start with some iron supplements. At the beginning g this did make my haematocrit go up again and he had to increase the dosage of Pegasys as well as resort to venesections to bring that down. So it was difficult for a few months. But now I am no longer anemic (yay!) and my platelets have gone back to around 600. My haematocrit was 43 last reading so I hope we can gradually start decreasing the Pegasys now. It’s really important to have an excellent haematologist who has experience with MPNs and is willing to listen to you. You also need a good dose of patience!
Your haematologist should be the one telling you when/if you need a venesection as well as any other treatment. That shouldn’t be your responsibility. You need to find someone you trust. I wish you the best of luck!
Thank you so much for your reply Marossi. That is what I was thinking too. I am happy to take responsibility for this but it feels too much to decide iron treatment and venesections
Yes I did, however taking iron tablets (2 a week) catapulted by hcv up to over 0.5 so I had to stop taking them. Like you, it’s hard to know if the symptoms - lethargy, lightheadedness, dizzy are related to iron deficiency or PCV.
I echo the good advice you have already received. I will add some technical info.
Pv makes too many red blood cells. They need to be reduced initially by venesection and then kept at right level with medication.
The venesections do make you anemic that is the effect of removing the blood. Then PV makes red cells quickly and you go round the merry go round again. As I understand it iron supplements help to increase the red cells so I have never taken any. The aim was to control the HCT sufficiently to have anemia as little as possible.
Your second question is about how you will know if the HCT is too high. I have symptoms of redness in face and a full feeling headache. Since I have had PV since 2005 I have experienced this many times and had to have a plan.
My Haematologist accepted my symptoms as evidence and would get me into the day clinic for venesection. I always needed one. Then we agreed on a plan that my GP would do a FBC at my request between my 3 month visits if I thought the HCT was too high. This works very well for me.
The first few years after my diagnosis were very difficult. I needed to learn such a lot both about PV and my experience of it. But I am now stable at a level that suits me using interferon to keep control. Good luck in your journey to stable counts.
Thank you for this information Mairead, it's really helpful. My haematologist said being permanently anemic was "the goal" which doesn't seem like a good option to me!
Its really encouraging to know that it is more controllable down the line and I am glad you have got to that point with yours. Thank you
Hi. I know this feeling all too well! It’s all an inexact balancing act - and something of a merry go round. The aim of the venesections is to make you anaemic and bring down the HCT. The anaemia drives up the platelet count. The iron supplements address the anaemia but drive up the haematocrit levels. And this necessitates a venesection. Hey ho!
My own experience is that I was very anaemic whilst I had a diagnosis of ET and I took iron supplements for a long time which did indeed eradicate that ‘wading through treacle’ feeling. I found the fatigue associated with severe anaemia quite distinct from general fatigue associated with an MPN. (I’d had it before when I definitely didn’t have ET and the symptoms were the same.) When my HCT began to rise, a second BMB confirmed PV. I started on venesections and the Haem (Prof Harrison) took me off the iron supplements immediately. They would simply be counterproductive. I then had the double whammy of the underlying effects of anaemia and the effects of the venesections.
My platelets then rose so high (1700) that starting on Hydroxy was a no brainer. My counts have all come tumbling down, iron and ferritin levels appear on the up and the number of venesections has been reduced. So result all round.
The Haem team have tentatively suggested that if my numbers remain stable they might put me back on the low dose iron (I was never allowed to take full doses). I’m not sure whether I need it. HTH.
P.S. I tend to know when I need a venesection. I get very headachy and muzzy headed. Although generally I do feel much better on the Hydroxy so sometimes my numbers creep up and take me unawares! I’ve always been told to call the department if I notice a change in symptoms and I think I need an earlier than scheduled consult / venesection.
Hi, I have ET. I have noticed my tiredness has a direct link with my heamoglobin and platelets.
I struggle to keep my Hb above 11.5. And my platelets below 450. If my platelets are 400 and haemoglobin 11:5 I’m coping almost normal. If my platelets rise and Hb stays the same I’m more tired. If my Hb drops and platelets stay at 400 I’m more tired.
I’ve also noticed since my hydroxicarbomide dose has risen I’m more tired. ( steady increase from 12 to 17 x500 a week plus 1 anagrelide a day.
Hope this helps. Just remember we are all different and repond to treatment in different ways.
I was always informed that iron tablets are a no-no when you have PV. I had a gastric bypass and have to take daily vitamins. It was murder trying to find vitamins that did not contain iron. I finally found them but, as far as I am aware, I am not supposed to take an iron supplement.
Hi, I was told the same about not taking iron when you have PV but was placed on them for two weeks only after a venesection in error! I struggle with anaemia too - my hgb is 12.0 at last tests. This is post arm op too so think I lost some blood during that. I was starting to wonder if I’m getting closer to needing meds but a bit scared of the thought.
As others have said, you shouldn’t have to take the whole responsibility of venesections, you should be guided by your haem team. Insist on answers. Kindest regards Aime xx😺😺
PS I find pasta, bananas and nuts are the best for raising some energy.
My PV was was triggered by too many iron infusions. I would be drained after the phlebotomy but what helped was adding the hydration after. What they take out needs to go back in. Since I have been able to .ower my hemacrits (sp) from 52 down to now 42.6, I have started to take iron again, it slowly. Your doctor should have limits for with mine originally being high, I was in the red zone, no pun Intended 😎, for possible stroke. I was doing two phlebotomies a week, to get the count down.
I still get tired, but not as severely. Also, going In hydration also seems to help with getting some energy back.
Good luck and keep us posted on your progress. We are all looking at the same goal for each other..getting better and enjoying life...
Thank you all so so much for these helpful and supportive replies! I have now booked a blood test to check my ferritin and red blood counts and will come off the iron ( prescribed by my gp who just said to "be careful" with it).
It's definitely a learning curve but it really helps me feel less overwhelmed to have this forum x
Hi I Must Have Had 50 Venesections,Not had one for 12 months ! Went To New Cross Today was surprised that My " Count" was 1 point below what it should be,So Venesection Sept. Mine is PV Too. Always feel good when a pint is taken. Stay With It All The Best !
Hi, yes I have been having venesections and became very iron deficient. I stopped for a while but have started again on a series. It is essential that you go on the advice of your Specialist and not just make the decisions yourself. I was really surprised to hear that you have taken iron supplements - this was an absolute "No" from my Specialist. What about Hydrea - are you taking that? Good luck - bit of a maze isn't it
My specialists advice at the moment is to have one when I feel very tired etc, so we can begin to set limits for it. The iron was given to me by my gp but I did mention it in my last appointment
No real medications at the moment, just aspirin and venesections.
One problem is that a lot of GPs have little or very limited experience with MPNs so I ALWAYS go with what my consultant says and question what my GP says/does. You can't blame GPs lack of knowledge on the subject as, apparently, this only affects 1 in 250,000 people. I was telling my GP what I should and shouldn't do because he didn't have a clue.
When it is time..ask to try the real liquid iron. I am able to obtain this through Walgreens pharmacy And take one teaspoon daily as a trial run, for a week. I check with the hematologist every two weeks..I still get hydration so I do not become dehydrated. Have not given blood since starting the Hydrea. My numbers have stayed stable.
At a recent appointment my haem advised that I am slightly iron deficient (recently had a venesection (Nov). He explained that he wasn't concerned by that as essentially reducing the iron is in effect putting the brakes on red blood cell production - to stop the blood becoming too thick.
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