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  • B12/anemia? - low cellular B12 levels after 5 years treatment!

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    Old 03-28-2016, 08:52 PM   #1
    ninth
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    B12/anemia? - low cellular B12 levels after 5 years treatment!

    Hi,

    I found out I had a B12 deficiency 5 years ago. My levels were very dangeously low, especially at the cellular/functional level. I was told I was near paralysis. Now, after 5 years, they are still low! They have come up to almost borderline, but it still flags red on my tests. My serum levels though are too high for the lab to measure! Its just not getting into my cells so it's not able to be used. I do twice a week injections plus twice a month IV B12 and still it has taken my body 5 years just to go up a little bit. I feel the effects of the shot for about 15 hours barely then I just feel awful again, thankfully it's prescribed every 2 days. But I don't want to do it every 2 days forever!

    In the beginning I was told it would take a month or two to get my body back to normal and then just a shot every few months for maintenance. My drs have not only increased my dose but also the frequency and STILL after all these years I'm deficient. And still feeling awful.

    I'm seeing a new hematologist soon, but has this happened to any of you? Ideas? Thoughts? My current Drs are stumped.

    Thanks!

     
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    Old 04-16-2016, 11:35 AM   #2
    Heavensangels
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    Re: B12/anemia? - low cellular B12 levels after 5 years treatment!

    Quote:
    Originally Posted by ninth View Post
    Hi,

    I found out I had a B12 deficiency 5 years ago. My levels were very dangeously low, especially at the cellular/functional level. I was told I was near paralysis. Now, after 5 years, they are still low! They have come up to almost borderline, but it still flags red on my tests. My serum levels though are too high for the lab to measure! Its just not getting into my cells so it's not able to be used. I do twice a week injections plus twice a month IV B12 and still it has taken my body 5 years just to go up a little bit. I feel the effects of the shot for about 15 hours barely then I just feel awful again, thankfully it's prescribed every 2 days. But I don't want to do it every 2 days forever!

    In the beginning I was told it would take a month or two to get my body back to normal and then just a shot every few months for maintenance. My drs have not only increased my dose but also the frequency and STILL after all these years I'm deficient. And still feeling awful.

    I'm seeing a new hematologist soon, but has this happened to any of you? Ideas? Thoughts? My current Drs are stumped.

    Thanks!

     
    Old 04-16-2016, 11:46 AM   #3
    Heavensangels
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    Re: B12/anemia? - low cellular B12 levels after 5 years treatment!

    I have no idea what's causing low b-12 levels either. Came on here hoping to find new answers. My b-12 started dropping about 3 years ago and I get the injections. My b-12 hasn't dropped anymore but it doesn't get above borderline. Haven't had my intrinsic factor checked, if they can check that. The doctor says as we age , the intrinsic factor drops. But if it's going directly into the blood, I wouldn't think it would matter. Anyway , even borderline makes you feel pretty bad. I'm still looking for answers. Gonna keep checking on here for updates though.

     
    Old 04-16-2016, 01:31 PM   #4
    JohnR41
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    Re: B12/anemia? - low cellular B12 levels after 5 years treatment!

    Quote:
    Originally Posted by ninth View Post
    My serum levels though are too high for the lab to measure! Its just not getting into my cells so it's not able to be used.
    Not getting into your cells sounds like insulin resistance. Are you taking a drug to lower your blood sugar? Perhaps a medication like Metformin? If so, this type of medication could put you at higher risk for B12 deficiency.

    Anyway, in my opinion, with or without such a drug, insulin resistance could be the problem.

    Did this possibility come up at all in conversations with your doctors?

    Last edited by JohnR41; 04-16-2016 at 01:33 PM.

     
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    anemia, b12, pernicious anemia



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