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» LymeNet Flash » Questions and Discussion » Medical Questions » Has anyone seen a hematologist about B12 & MTHFR issues in the NJ/NY/Ct area?

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Author Topic: Has anyone seen a hematologist about B12 & MTHFR issues in the NJ/NY/Ct area?
JJ29
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Have been advised by LLID to see a hematologist about my high b12/folate levels.

I have recently learned that I have the MTHFR C677T single copy gene mutation and my research points to the fact that this mutation may not allow the conversion of folate/ B12 to an absorbable form in the body and this could lead to high serum b12/folate level, which may essentially mean that I am folate/b12 deficient.

Of course my LLID who is somewhat familiar with MTHFR has never heard of this as a possible cause of elevated b12 and wants me to go to a hematologist to rule out other possible causes.

Can anyone recommend anyone in the NJ/NY/CT area?

Thank you all!

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
sk8ter
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did you use a regular lab for this? And what specific tests did you get if you don't mind .
Posts: 871 | From orange county, ca. | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
sickofsick
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Please elaborate on this test - I think my daughter needs it - extremely high B12 levels that I think mean she isn't absorbing it. Thanks
Posts: 312 | From Utah | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
JJ29
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Sickofsick......just learning about this issue myself, but I hope the links below that I received from the good people on this board will be helpful.

https://sites.google.com/site/virginialyme/mthfr
http://www.mindmeister.com/12721370/mthfr-treatment

JJ

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
JJ29
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Sk8ter, I had the MTHFR DNA analysis (blood test) done through Labcorp ......this checks for the two most common gene mutations C677T and A1298C.
I asked my LLMD to add the MTHFR to my regular labwork order and it was covered by my insurance

There are a number of other gene mutations.......look at my recent posts and you will find additional info about MTHFR testing that a lymenet member was kind enough to send me.

JJ

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sickofsick
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Thanks JJ,

I like this diagram! Learning so much more than I could have ever dreamed of.

I think I will be requesting the blood test.

Lori

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sickofsick
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JJ, trying to print the diagram above. Do you know if I have to register?

Lori

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JJ29
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Sickofsick.....glad the diagram was helpful.....for some reason I couldn't print it even after I registered....let me know if you have better luck.
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cordor
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I am VERY interested in this. My b-12 levels have been >3,000....WAY over the limit, too high. I am a vegetarian and do not supplement, so this makes no sense. NOT one doctor can tell me why. Where did you find this info about MTHFR possibly causing that elevation? and what other causes did your doc say there might be?
from NJ also.

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Corinne

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JJ29
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Corinne, look at the two links I posted above in response to Sickofsick.......the second link is a chart outlining MTHFR info ......look on the top left side of the chart (lab testing) where it indicates that B12 may be elevated because the body is unable to use it.

My ID did not go into the possible causes.....however, from what I read online there are other reasons why B-12 may be elevated..... it could be related to anemia, liver issues, a form of leukemia.

I also read that vegetarians are usually B12 deficient because this nutrient is largely derived from animal protein which is lacking in this diet......vegetarians are usually advised to take a b12 supplement.

From what I understand the serum B12 test is not always an accurate indicator of how much b12 is actually being absorbed by your body.....sorry, maybe someone who is more knowledgeable about this can chime in??

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JJ29
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Corinne, look at the two links I posted above in response to Sickofsick.......the second link is a chart outlining MTHFR info ......look on the top left side of the chart (lab testing) where it indicates that B12 may be elevated because the body is unable to use it.

My ID did not go into the possible causes.....however, from what I read online there are other reasons why B-12 may be elevated..... it could be related to anemia, liver issues, a form of leukemia.

I also read that vegetarians are usually B12 deficient because this nutrient is largely derived from animal protein which is lacking in this diet......vegetarians are usually advised to take a b12 supplement.

From what I understand the serum B12 test is not always an accurate indicator of how much b12 is actually being absorbed by your body.....sorry, maybe someone who is more knowledgeable about this can chime in??

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cordor
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ok- I will look at the chart. That is what is so perplexing to me.....you are right, most vegetarians ARE b-12 deficient, yet mine is sky high!!

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Corinne

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JJ29
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Corinne, remember that just because your levels are high doesn't mean you're cells are absorbing the all of that b12......the serum b12 test is not a reliable test for what is actually being absorbed.

Ask your MD/LLMD to also check your homocysteine and methamalonic acid (MMA or urine MMA is better) levels.... if these are elevated it may mean you may have a b12 deficiency.

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