Help! The doctor says my active b12 levels are too high

Discussion specifically about the diagnosis and treatment of Pernicious Anaemia

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Help! The doctor says my active b12 levels are too high

Postby Jacalyn20man » Thu Feb 06, 2014 3:00 am

Hi all
i haven't written before, even though I have got lots of helpful advice from reading all the stories. My blood work just came back and the doctor says my active b12 levels are over 128. He says they don't measure how high after 128 and he says my blood levels are over 1400 and they don't measure higher than that. He says to stop my injections for "a while" until the levels come down??? I have been on concentrated b12 10mg in a 2ml solution twice per week. If I stop, won't I get symptoms of PA again? I have symptoms anyway and I take the injections! can you have active b12 levels that are "too high"? Thanks for your help and regards from Down Under.
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Re: Help! The doctor says my active b12 levels are too high

Postby kimks mom » Thu Feb 06, 2014 3:46 am

I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: Help! The doctor says my active b12 levels are too high

Postby Jacalyn20man » Fri Feb 07, 2014 7:34 am

Hi Pat and Andrea
Thank you for your replies. I have good iron and ferritin levels. I have just been diagnosed with Kryptopyrrole, which is a b6 and zinc deficiency. And yes I have neurological damage as I had a positive Romberg's test and I have also just been put on T3 supplements. I just seem to need the injections otherwise I go down hill, find it hard to walk, have no energy, bump into walls etc. I have even given my doctors both of Martyn's books, but they still seem so concerned with the numbers instead of treating the symptoms.Do you know when the DVD will be available? Thanks so much for your help.Jac :D
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Re: Help! The doctor says my active b12 levels are too high

Postby Jacalyn20man » Fri Feb 07, 2014 7:36 am

Folate levels are high at 3488 and I have been told to stop taking this as well. Thanks!
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Re: Help! The doctor says my active b12 levels are too high

Postby Jacalyn20man » Fri Feb 07, 2014 11:11 pm

Thanks Andrea. Greatly appreciated. Have a super weekend. Jac
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Re: Help! The doctor says my active b12 levels are too high

Postby BeeNumber12 » Sat Feb 08, 2014 8:19 pm

Kryptopyrrole: am not finding a lot of information on this in, for instance, PUBMED. Apparently the deficiency condition is known as Pyroluria, a condition that has been known for several decades. It is sometimes referred to as mauve factor, KPU, kryptopyroluria and Hydroxyhemopyrrolin-2-one, or HPLnn I notice it is sometimes treated with antibiotics. It may associated with copper deficiency and even chronic Lyme disease. See here:
http://metabolichealing.com/pyroluria-b ... lications/

More information on zinc : http://lpi.oregonstate.edu/infocenter/minerals/zinc/
And on B6 http://lpi.oregonstate.edu/infocenter/v ... minB6/#rda

Welcome to PASOC, Jac. You might consider putting your info into your own story. I hope the above sheds a bit of light on the complexity of interactions among minerals and vitamins.
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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