MPN Voice

No happy medium. Advice needed

Morning all

I had my 8 weekly appointment yesterday and received good and not so good news. My HCT was at a fantastic 0.41

so no venesection required, which was great news. However I've been feeling very fatigued, head-achey & breathless over the past few months and I discovered the reason for this could well be my low ferritin level. It's currently 4.

My question is, is there anyway I can raise my ferritin level without dramatically increasing my HCT? My consultant didn't offer any advice and was just very pleased with HCT level as was I.

There really is no happy medium with PRV is there :(

Kari. x

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Good question. I’m also PV with very low iron and ferritin but HB about 135 and RBC about 6.

I feel no fatigue and not sure whether because my HB okay and RBC high.

Also the only time I did feel fatigued, I realised my Vit D was low but only just borderline low. Since taking Vit D supplement I’ve been top form. I’ve read elsewhere that PV patients seem to have low Vit D so might be worth checking this out.

Otherwise, as lots of people here say, exercise and good diet now an essential part of our routine. I’m sure this helps.

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Thanks Paul. It's definitely worth getting my Vit D checked out... I'll look into it. I already have a good'ish diet - I don't eat processed food and eat plenty of fruit and veg, I also don't drive so make sure I get at least 8000 steps in a day. Sadly though living in the 'sunny' UK means I don't see a lot of sun light and I don't eat oily fish (I prefer cod, plaice, haddock and sea bream) so a vitamin D supplement could be the answer.

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Should have said I think sleep a big factor re fatigue as well. I now take herbal tea and a couple of deep sleep aromatherapy drops next to pillow. Occasionally melatonin.

I often get cramps at night but mitagate with plenty of pre bed stretching.

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Hi

Have a look into magnesium deficiency as well and Vit K2,

avoid magnesium oxide.

Peter

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Hi Kari, I will ask the medical team for you. Maz

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This all sounds very familiar! And I’ve never got a straight answer. (Because I suspect the treatment is all about checks and balances.) The aim of the venesections is in effect to make us iron deficient. My iron and ferritin levels are higher than they were - around 8 now. I don’t feel as fatigued / breathless. I don’t know whether that’s because the iron is marginally up - though far short of ideal, my body has adapted or I’ve just got used to new ways of ‘being’. However, because of my symptoms the team ran additional blood tests including for Vitamin D (that was normal). It does seem an area which bothers a lot of PV patients. It would be good to have some answers and treatment strategies. At present it does seem something of an empty space.

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This is really interesting. I have low iron levels too and my GP wanted to give me iron supplements but my haem team said not to. Do you think in a weird way perhaps that keeping iron levels low is the body's way of trying to help with PV? It seems more than coincidence that so many PV patients have low iron too? I hope you feel better soon though Kari and a big hooray for your other levels being great x

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Morning. Yes I do. My consultant said that if I didn't have PV and my GP discovered low ferritin levels I would definitely be prescribed Iron supplements. But, due to PV they won't as they want to keep the HCT low.

It is understandable... but it's not the best when the result means feeling totally wiped out, drained and like the walking dead. It would be great if they could find a way to filter out the different components and put the bits we need back in :) *Wishful thinking*

K.x

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reply from Prof Harrison - Very difficult the balance between just enough and too much and feeding oxygen (iron) to a fire (the PV bone marrow).

Maz

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Thanks for asking Maz and thank Prof Harrison for me too.

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