I have MTHFR C677T and high b12/folate.....I know that I may not be converting the b12/folate to a usable form for my body and that perhaps I may be folate or b12 deficient.
However, the strange thing is that my homocysteine level is not elevated but in the low normal range. It has actually dropped in the past couple of months from 6.6 to 5.6. The Methalmalonic Acid (MMA)is also normal.
Does anyone else have the same situation? Does this mean that the high b12/folate are not related to the MTHFR/methylation block issue?
Thanks so much for your help!
Posted by JJ29 (Member # 5288) on :
Anyone?
Posted by aperture (Member # 34822) on :
I have C1298A MTHFR and high folate/B12 with normal homocysteine levels. I don't know what that means yet, but will find out at my next appt.
Posted by JJ29 (Member # 5288) on :
Thanks Aperture.....would be interested to hear what your llmd has to say about this.
Posted by Razzle (Member # 30398) on :
Same here - high folate & B12, normal homocysteine & MMA.
I have one MTHFR A1298C mutation.
My B12 level drops when I don't get B12 shots (even if I am taking sublingual B12), but my folate stays elevated whether or not I'm taking supplements.
I haven't asked my doctor yet about this because he really doesn't know as much about this stuff as I wish he did...he did the Yasko test for me at my request.
Please post what your doctor says about this - I'm curious what those in the know say about it...
Thanks,
Posted by JJ29 (Member # 5288) on :
Thanks Razzle..... interesting situation...... does your b12 level drop to a good normal range or a very low level when your not taking the shots?
I'm wondering if the b12 level is dropping because your body is absorbing more of it in the cells (since you're taking methyl b12and methy folate) and there is less of it in the bloodstream??
I hope others who have some knowledge about this will comment.
Are you following Rich Van's simplified protocol or Amy Yasko's protocol?
Posted by JJ29 (Member # 5288) on :
In this link Rich Van K (founder of the "simplified protocol" for CFS) discusses the possible causes of low homocysteine levels in people with methylation issues:
I have always had normal homocysteine levels, very high B12, and C1298A MTHFR. No one ever explained if the combination is meaningful.
Posted by JJ29 (Member # 5288) on :
Thanks Seek......has your folate level been high as well?
Are you taking methyl b12 & folate to address possible methylation block?
Posted by Jennifer70 (Member # 30280) on :
I had a very high B-12 level when i was first diagnosed. But i just had it re-checked a year after tx and it's normal now.
never checked my folate level.
Posted by JJ29 (Member # 5288) on :
Thank you, Jennifer.......were you supplementing at all with B12 before or after treatment?
Posted by Ivy (Member # 18365) on :
Do you get the blood tests for MTHFR done either at Quest or Lab Corp?
Just wondering if these are usual tests that insurance pays for or is it a specialty thing that is out of pocket.
Posted by aperture (Member # 34822) on :
My ins covered it. I had the labs drawn at the hospital lab, no problem.
Posted by JJ29 (Member # 5288) on :
Ivy, I also had no problem testing MTHFR......my lab is labcorp and my insurance covered the test.
Posted by Ivy (Member # 18365) on :
Thanks for your replies.
Insuance coverage is always a good thing!
Posted by Razzle (Member # 30398) on :
JJ29,
My B12 level was 67 the first time it was ever tested. I was prescribed the shots and took them monthly (cyanocobolamin).
I had been taking B complex (no co-enzyme or special forms) that included B12 for years prior to this, but apparently I wasn't absorbing the B12.
After a while on the cyano-B12 shots, I started getting side-effects and had to stop them. So I tried to switch to sublingual B12.
I never really felt any benefit from the sublingual B12, but by this point I had discovered that I needed the methyl-B12 instead.
So I asked for methyl-B12 shots and felt immediately an improvement. When I stop the methyl-B12 shots, my blood B12 level drops slowly. I believe it would eventually drop below normal again.
I don't seem to absorb enough B12 from my diet even though I do eat dairy products (but no meats/fish/eggs).
I have not started the methyl-folate yet, so that is not a factor in all of this yet.
I know I will not be able to do Rich's simplified protocol because of my other methylation issues (upregulated CBS, etc.).
I'm trying to do Yasko's protocol, but can't really do that either because of allergies & sensitivities to ingredients in most all of the products on her protocol listing for my specific mutations.
I am currently in the process of attempting to find suitable substitute products but it is a long and slow process.