Iron deficiency problems

Hi everybody,

Can you help?  I was diagnosed with PV in June last year.  I am pleased to say that I have had really good care from my GP and the haematologist ever since my diagnosis.  The PV is being well controlled by Aspirin and a venesection about every 6 weeks and the blood numbers are fine.  But there is a fly in the ointment.  I am iron deficient and this is causing problems like feeling washed out etc.  The main problem is recurring cellulitis on one leg.  I'm just in the middle of a course of antibiotics for my 3rd bout of cellulitis over the past 7 months. The haemo has never directly put it down to iron levels, but internet sites do make the connection. The cellulitis is a minor inconvenience in the scheme of things, but the lack of iron generally makes me feel like a wet rag. I know that iron supplements are out because that would send the red count rocketing.  I am realising how much these MPNs are  so much a balancing act.

My dilemma is I wonder whether going onto Hydroxy would mean fewer venesections, so perhaps less of an iron problem, or if I would just be swapping one set of problems for another.

I'm sorry to be such a moaner, when my problems are very minor compared with what others are going through.   I just wondered if anybody else had had a similar problem with iron and what did you do about it.  Many thanks. (What would we do without this wonderful site?)

Sandra

6 Replies

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  • Hi, I have PV and iron deficient too which I know gives you the washed out feeling.  I am no medic but as far as I understand I have to be kept at this level so my red blood cells are not too numerous and my blood is not too thick.  It is hard because if your blood is too thick you feel yuck, if your red blood cell volume is ok your iron is low!

    I am still on venesection only treatment so not sure about the drugs. I think each case is looked at very much on an individual basis and I am sure some of the others on the forum with experience of hydroxy will answer you.  In the meantime you are not a moaner, you are coping with horrible and frustrating fatigue .  Keep in touch and know that I understand how you are feeling and go and do or eat something you really like and treat yourself.  Your thoughts affect the way you are feeling so by finding something you enjoy happier thoughts lead to happier thoughts which will help you cope with the illnesses you have.   If I feel down I think of my grandson and the new baby due in June and I feel better!  Lots of hugs Aime x😺

  • Thank Aime.  What a lovely, helpful reply. I do try distraction therapy if I'm feeling sorry for myself, but, to know that someone else shares the problem is very comforting. My distraction is the flute which I decided to learn at my grand old age. Grappling with the notes certainly concentrates the mind! Thank you again for your reply. I wish you all the best. Sandra

  • Love this site it is like my bible i read it every night it helps me know about this disease. I had bowel cancer 5 years ago and i thought that was scary. Only had a mentor and she was so negative it was awful so thankyou from the bottom of my heart for being there for all of us newbys. Have pv jak 2 positive and hemachromotosis. So damm scared if it wasnt for you guys. Love you guys so much and never evan met you xxxxx   

  • Hello Sandra ,,help yourself as much as possible with what you eat and drink..if you can ,,try spinnage ,dark greens and lettuce ,,it's important to get the goodness of growing leaves into your blood ,,my old mum always made gravy on Sunday's with greens water ,,we had a green veg every day ,,tomatoes are a must ,strawberries are good ,,get a juicer and feed your blood back to health ..I had Venesection every 4 weeks on hydro as well for 18 months ,,,changed my diet ,,it made all the difference to me ,,drink lots of filtered water ,,no alcohol at all ...be positive and make those changes ,,,  twinkly xxxx

  • Hi twinkly, thank you for your reply. Yes, we have greens  every day. I have Ibs. so can't overdo the greens or I'm in trouble, but certainly processed food features very little in my diet.  Thank for again for taking the trouble to reply. I'm beginning to feel less sorry for myself now that the antibiotics are seeing off the infection in my leg.  Kind regards to you.

    Sandra

  • Just curious to your comment on alcohol. I haven't been truly diagnosed yet... since my 1st oncologist was a moron! I see the wonderful Dr. Brady Stein next week, and I can't wait!! Hoping to finally get some answers. I'm guessing the alcohol thins the blood?? Thanks in advance;)

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