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B12 - conflict

Posted , 6 users are following.

natalie41165
natalie41165

Before my PCV was discovered, I had B12 issues and took B12 tablets, and it was sort of under control.

Co-incidentally B12 and PCV symptoms and diseases are similar initally.. Headaches, dizziness, nausea, problems with internal organs malfactioning.

My heamotologist (who I don't like, but the next nearest one is an hours drive away), when she diagnosed me, about three years ago now - she said to stop taking B12 as it made the PCV worse.

(it's got iron or something in it.)

Now my GP, after my last blood test has said I have to start taking B12 medication.

What I do? Haemotologist says not to take/ GP says to take. Does anyone else have a similar experience?

Every time I have my blood drained, which is always overdue;-( clinic shouts at me because I'm dizzy, headaches, high blood pressure etc, and they can't tell if it the PCV or the B12

 

0 likes, 5 replies

5 Replies

  • ItchyChris
    ItchyChris natalie41165

    Posted

    Natalie41165

    As a post transplant PV sufferer I have to have B12 injections to try and boost my red cell production as it is currently well below normal levels. It strikes me that PV and B12 are incompatible unless one also develops Myelofibrosis which I assume you do not have. I think that in this case your haematologist out ranks your GP and suggest you have another consultation with your GP and ask specifically why he/she thinks that B12 is appropriate. I have taken a close friend with me to consultations as a second pair of ears can help with comprehension.

    ItchyChris

  • Clicker
    Clicker natalie41165

    Posted

    Very confusing Natalie. My haematoligist says not to take any iron tablets ever as would add to the problem. I am JAK2 positive and trust my haematoligist completely. They are the specialists not GPs
  • peter98873
    peter98873 natalie41165

    Posted

    Hi Natalie,

    I have suffered with PV etc for many years and your problem is not one I have personally encountered but I am sure you will get a suitable response from others.  My view is that the Haematologist is a blood specialist and sees more patients with PV than any general doctor possibly will.  In fact GP's refer their PV patients to the specialist for ongoing treatment.  PV and associated disorders are rare diseases and need specialist care and consequently should not be treated lightly.  Your conundrum needs urgently solving in your best interests.  I would suggest that you contact your Haematologist and present your difficulties to her and request that she comes back with the correct solution to your problem.  I am quite sure you will have more than enough to cope with without this difficulty on your mind.  PV is treatable but not at this time, curable.  Your Haematologist is someone you should be able to rely upon when needed.  I suspect that your general doctor does not yet have the depth of knowledge needed to deal with such a rare disorder such as PV and a chat with the specialist could be to his advantage too.  There will be plenty of advice on this forum for you to digest for PV is not a straightforward disorder to deal with.  It has different avenues that need consideration as you will discover.  Try to keep calm and things will settle down.  Getting the right treatment for you is essential to your well-being in the times ahead.  Patients symptoms differ and do not nessarily affect each one the same.

    Best wishes for the future.    Peter.

  • Scotslassie
    Scotslassie natalie41165

    Posted

    I have Per and used to get B12 for painful muscles.

    When I changed doctors they decided that I was too low on iron and put me on it. I got sick very quickly and called my Haemotologist who demanded to know the name of the gp.

    He stated that the gp could have killed me.

    He said that he deliberately kept my iron levels low because polycythaemia makes me produce too much iron.

    • peter98873
      peter98873 Scotslassie

      Posted

      This points out the necessity to get an accurate and correct diagnosis to enable the right treatment to be given to patients.  Obviously your Haematologist acted quickly on your behalf.   Hope all is well for you now and that your pain is of a more comfortable nature.  There seems to be some confusion when B12 is considered as other patients have described.  Best keep in touch with your specialist.
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