Hi Maz, I have sent you a separate email but thought it may be helpful for forum friends to see the question and answer as I know it affects a lot of us:
While watching a video on Patient Powered MPN one of the consultants commented that those suffering from ET and PV should not be anaemic. My GP and haematologist told me that I have to be anaemic to keep red blood cell count down. This is obviously confusing me and I would be really grateful if you could get an answer from Professor Harrison.
Thank goodness we have this forum!
Kindest regards Aime xx😺
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Aime
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I am no Prof Harrison but I would suggest your GP and haem are wrong! With PV they like your haemocrit to be no higher than 0.45, but as far as I am aware this doesn't make you anaemic!
Yes, I have PV and have also been told they like me to be anaemic to make sure the red blood cells stay low. Also I was told to inform my GP I should never have iron supplements. I will follow your post with interest now 😀
Lesley x
Yes, I was told this too - I even made sure I didn't eat steak anytime before my blood tests! Although in fairness it was a long time ago, maybe the thinking has evolved since then?? I will be interested in any reply to this too.
Hi Aime Good question. I have ET on Hydroxy ,aspirin. Every blood test I have shows I am anemic , I have the usual symptoms, pallor , breathlessness, fatigue etc.but my Heamo says not iron deficiency . She offers no solution other than stopping Hydroy or lowering the dose, but as my platlets are rising steadily at each consultation , currently just under 700. I don't think this is an option for me, adding in also that I am diabetic. So I too would be very interested to hear a professional opinion. I know you have PV. Which presents different problems, but a general coverage of our conditions re. Anaemia would be very helpful.
Best wishes to you Sandy
Would like to understand this too. I get confused when people recommend spinach anf other food high in iron. I tend just to take my own advice and stick to the diet I think best and ignore other people's recommendations which to me often seem to fly in the face of logic. Sometimes it seems the best thing to do is ignore the "superfoods" and don't buy women's magazines forever telling you what to eat to be superhealthy. That is the problem with rare conditions. It sometimes seems the best thing would be to reject all the foods they tell you are good for you and do the opposite!.
Thank you for your replies everyone. Hopefully we will get an answer that will help us all. I know being even slightly anaemic makes me very tired but so does having too many red blood cells! Kind regards Aime x😺
Being mildly anaemic is a goal of venesections, the less iron your body has the less red blood cells it can produce. I doubt eating certain foods such as steak or spinach will up your iron levels much.
Thank you Paul, that is what I have always understood but that was not the view expressed by the medic on Patient Power MPN. I just need it clarified especially as I have just had blood test results and going to need a venesection. Kindest regards Aime x😺
the reply from Prof Harrison to this question is: She is correct in that the management of PV using venesection is to reduce the Hb and keep the iron levels down, it shouldnt result in anaemia but it might.
If anyone is concerned about this and how it will affect you, you should speak to your haematologist and GP as they will be assessing this on you and your blood counts and your overall health, you must remember that treatment is very individual. Maz
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