Injection advise

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Diagnosed May 17 B12 85 B9 1.2 and Vit D 19 . So stated injections got to 7 started to get sick , so stopped . Also had iron infusion and take daily folate.

   End of June B12 1400 hundred .

   Last week bloods done B12 320 folate 23.

   The loading for me was no silver bullet and now I feel worse.

   Do I give myself another shot 

Do i carry on with folate .

  My GP and me had massive row , due to Hospital flagging up anaemia late 16 . When I ask was told impossible blood 02 / 98!percent.

   Yes I'm damaged central apnea , restless leg , planter reflex gone massive pain and weakness . Had nerve test done waiting for results. I feel they all hoped I'd be like a spring chicken after 3 months well I hoped so too

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  • Posted

    Pernicious anemia is not something that gets fixed.  you can improve it with ongoing treatment. ignoring it can be fatal.  Most doctors do not have an idea on how to help patients manage it properly. Facebook has a great group that has a very good protocol.  Thy also have great information from people that are surviving with PA. Search Face group for Pernicious Anemia Support Group.  you must request to join but they have had information that has been invaluable in keeping me alive.  By the time I was diagnosed, I was informed I was in fatal stages. It is not a quick cure, the damage that occurs with very low B12 is head to toe.  I was up and moving after 2 years of injections but it was about a 5 year process of gathering information for my doctor to evaluate and regulate my treatment.  I now self inject weekly once or twice, take the recommended co-factors ie B6, D3, K2, Iron, Magnesium, Potassium etc., and listening to my body. 

    B12 count in June is not accurate because you were receiving injections. The active B12 number is what mattered. 

    I wish you godspeed in your journey to managing this difficult illness.

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  • Posted

    Go to Facebook, search Pernicious Anemia Support Group.  The group is a world wide group with some of the best Pa knowledge I have found. Once accepted, go under the group forms, there is an over whelming amount but take it one read at a time.  Because B12 has a devastating effect on your brain cells causing memory failure among other thing, I recommend a notebook to help yourself with info tracking.

    I have a doctor that is very open to saying this was not a subject touched on very much during school and training.  He has saved my life and is allowing me to help mange my treatments.  Most doctors will not do that.  

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  • Posted

    It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

    I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

    A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. . Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

    You don't actually say but that you have a diagnosis of P.A. as Dena says "you can improve it with ongoing treatment. ignoring it can be fatal" so you must carry on with the B12 and Folic acid..

    Do you have any idea why your levels got to be so low in the first place? .I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

    I wish you well 

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    • Posted

      Thanks Clive,

                                I have conflicting answers Hospital call it PA associated with my connective tissue disease .

                             GP calls it a bit of difficiency related to lifestyle and diet and all my symptoms are associated with my autoimmune connective tissue .

                  Friday I was floored so I gave myself a shot yep things are better so I know the answer . I need to carry on with B12 injections . On Tuesday I'll speak to the hospital for prescription or buy online .

               When I loaded in June vitD and Folate was not identified only late June . Only started folate second week July and vit D infulsion mid July .

               Yep all takes time to work and imject B12 every other day till I feel better is I feel the best route.

             Plus find GP who does not talk out of what he sits on.

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