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Poly vera/Iron content

Posted , 6 users are following.

frances20411
frances20411

I have joined other discussions on this site regarding Poly V but I do not

remember anyone mentioning if they have been monitored for their

Iron level....and if so...what is their program.

Thank you and Merry Christmas everyone.. 

0 likes, 8 replies

8 Replies

  • Scotslassie
    Scotslassie frances20411

    Posted

    Hi Frances,

    This is extremly important.

    I saw my local gp (not my own)who said that I was looking very tired and he put me on iron....I got very sick very quickly , which lasted for 4 weeks.

    I googled up my symptoms and read that pv sufferers should never take iron.

    I called my haematologist, who told me to stop taking them straight away and to get a blood test.

    When I saw him the next week he explained that he deliberately keeps my iron low so that the pv is kept under control.

    I had to have two extra venesections to bring my levels back to normal.

    Always be careful what other doctors prescribe...I know that this is difficult because we should be able to trust them all, but sadly not the case

     

    • paul250360
      paul250360 Scotslassie

      Posted

      You are spot on. PRV is not a common condition and l guess there are many G.P's out there that may never have come across it in their day to day practice.

      It should be rembered though, that iron is present in many foods but you would have to have enormous quantities in iron rich foods to get the iron quantities present in prescribed tablets.

  • nandrews
    nandrews frances20411

    Posted

    Scotslassie,

    That is interesting and likely useful to me.

    I have taken vitamin supplements for some time, not under medical direction. Very recently I started taking, instead, Pharmaton as it was on offer. It is labelled as 'Vitality' capsules and I see they contain iron sulphate with a given name of just iron! So I am going to stop taking that and go back to the multivitamins, until I have researched this more deeply.

    Thanks for the heads up on this.

    Nigel

     

  • Scotslassie
    Scotslassie frances20411

    Posted

    Hi Nigel,

    My haematologist said that we should steer clear of any supplements unless they are prescribed by the expert himself!

    He was very angry with the gp and said that he had put me very near to deaths door...he actually called him and told him in no uncertain terms what he thought.

    I always ask my chemist whenever I get any prescription now if they are going to be ok.

    He told me that I have to be careful taking anything like cold remedies or even pain killers.

    Its a jungle out there and when you dont feel well as it is, it can be very confusing.

    • nandrews
      nandrews Scotslassie

      Posted

      Scotslassie,

      Thanks once again for this information.

      I seems like I need to take a close look at what I take either regularly or occasionally. Though I don't load myself with much more than that which is already prescribed for my condition. But I need to run them passed a professional for evaluation.

      I take comfort from paul250360 saying that likely only specific supplements will carry enough iron to do any harm to us. That is I assume that teas, other drinks and foods have negligible quantities.

      Nigel

  • harrishill1
    harrishill1 frances20411

    Posted

    HI Frances. I agree with the person who says never take iron supplements. My iron level is usually low, and we aren't supposed to replace it. When we replace it, it makes our red count go higher. Anyway, it just makes us a little tired sometimers

    when iron is low. I just take a nap. However, I usually am not too tired to get lots done. I have been doing very well. Hope you are too.

    universes1

  • peter98873
    peter98873 frances20411

    Posted

    Hi Frances,

    Over quite a number of years I have been treated for PV and seen by different haematologists, specialist doctors etc.  Not one has ever recommended that I should be prescribed iron and the question has never arisen, whatever symptoms have  prevailed.  I"d go along with the advice offered by the previous contributors and suggest you carry on with what your own haematologist recommends, but always ask questions to ensure you get the correct and best information.

    Thanks for your greetings.  Best wishes for 2016.

    • frances20411
      frances20411 peter98873

      Posted

      I stoppped eating red meat contains iron (my own decision) and my HCT dropped below 44 (which is my target) . Rarely do I need a phlebotomy  (lost of blood also mean lost of iron).

      ..the Hematologist recommends time release iron once a week whether or not I have a phlebotomy and my primary had said No iron.

      I insisted on a lab to ck. my iron level.  It is suppose to be 8 but mine is 5.. Since then I have had a few iron injections..but again one has to be careful since one is walking a fine line between too much iron and a high HCt.or too little.

      People with Poly V. cannot be evaluated and treated for iron in the same manner as someone without PV.. 

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