MPN Voice
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PV Iron supplement

I had 2 appointments at my surgery today, one was knicker dept with the nurse (not relevant here) and the other following a B12 and iron blood test. I mentioned to the nurse as I was leaving that I also was due to see the dr. She checked her screen and said I would definitely have to take iron. I explained that because of my PV, I cannot take iron so she said to speak to dr. When I saw him, I explained that I could not take iron. He advised me to eat black pudding!!!! I felt fine before I went to the surgery. He gave me a print out from which I have printed below. I will take it to my next hospital appointment in 3 weeks time. I told him that I feel well and have actually been less tired and he suggested that maybe I have got used to that level of tiredness.

Description Value Range

Serum ferritin 9 12.00 - 300.00 ug/L

Serum iron level 4 10.00 - 30.00 umo/L

%Iron saturation 5 25.00 - 50.00%

Unsat iron binding capacity 81 37.00 - 77.00 umol/L

I look forward to hearing your comments.

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Hi,

I think you are wise to wait until you see your haematologist who will have a better understanding of your low iron level. You don't say what form your control of PV is but I remember when mine was venesections I had low iron like you and had to live with it. It righted itself slowly but it was never an option to take iron supplements. And even now I have normalish iron levels I am aware of iron rich foods and have them sparingly.

I have found PV is a rare disease and not encountered by many GPS. In my travels I have met haematologist who had little understanding of it. Nothing much will change in 3 weeks and you are coping with it. So good luck in your adventures in all departments.

Mairead

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Thank you Mairead. xx

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Hi. The key thing is you are feeling well and not tired. That’s probably what really matters!

I’ve been wondering whether over the time the body adapts to the low iron levels. It has certainly impacted on me but then again I don’t know to what extent my current symptoms are down to low iron / high platelets / PV generally. Or more likely, a mix of all three.

You’re absolutely right to stick to your guns about no iron supplements. I find non MPN clinicians tend to either be entirely ignorant or nod sagely when you just know they haven’t really a clue!

P.S. I’d think I’d go for spinach and kale over black pudding any day. 😂

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Thank you Ebot. xx

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Hi,

I remember when I was diagnosed with PV 12 years ago my heamotologist saying, we are deliberately making you iron deficient, do not eat black pudding or liver. He also said that as iron is absorbed differently by the body when eating vegetables, spinach etc, than meat, greens are ok.

I would wait to see your heam. I’ve yet to meet a GP who understands mpn’s.

best wishes

Judy

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Thank you Judy. xx

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Hi. My GP wanted me to take iron supplements during the summer as my counts were consistently low at about 17. (Norm levels are bet 10 and 300 I think). I asked was he sure given my PV and he said it would be fine. I just emailed my haem nurse and he came back to say they wouldn't advise it unless I was especially tired and suffering effects of low iron. I wasn't so I didn't take them. It's definitely a good idea to check these things with your haematologist to put your mind at rest and double check the course of action. Hope that helps xx

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Thank you Skyhope. x

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