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-   -   Making sense of MTHFR (https://www.neurotalk.org/peripheral-neuropathy/215284-sense-mthfr.html)

beatle 01-26-2015 10:38 PM

Making sense of MTHFR
 
I did genetic testing about 7 years ago but all I can find on the results relating to MTHFR is this:

We evaluated the following markers
Gene: MTHFR
Marker: rs1801133
Your Genotype: T/T

Does it mean anything?

I also just noticed I am a carrier of Galactosemia. Never heard of it.

janieg 01-26-2015 11:04 PM

That's "MTHFR C677T", and you have a double whammy on it (two bad copies). If you just Google that complete term, you'll find a lot written about it.

This page does a good job explaining it in relatively simple English, but I can't speak to the accuracy of what it says.

http://holisticprimarycare.net/topic...disease-puzzle

Quote:

Originally Posted by beatle (Post 1120474)
I did genetic testing about 7 years ago but all I can find on the results relating to MTHFR is this:

We evaluated the following markers
Gene: MTHFR
Marker: rs1801133
Your Genotype: T/T

Does it mean anything?

I also just noticed I am a carrier of Galactosemia. Never heard of it.


beatle 01-27-2015 12:18 AM

Thanks for replying. So, what should I be doing or what can I do?

janieg 01-27-2015 01:26 AM

Quote:

Originally Posted by beatle (Post 1120488)
Thanks for replying. So, what should I be doing or what can I do?

I can't answer that. I'm just currently doing as much reading and research as I can based on all my methylation mutations.

beatle 01-27-2015 02:32 AM

Ok, I understand. Well thanks for the link too.

mrsD 01-27-2015 07:39 AM

That link is excellent...I am going to
Put it in the B12 thread later today.

Thank you janieg for finding it and
Sharing it here.

beatle 01-27-2015 11:34 AM

I did some reading about MTHFR. On SNPedia (excellent website for checking individual DNA variations by the way http://www.snpedia.com), Rs1801133 (C667T) is categorized as a Magnitude 3 ("Probably worth your time") on a scale of 0-10 however, I do believe based on my result and what it can potentially cause, that it very well may be the cause for my idiopathic PN.

Here is where I am stuck. I then went to MTHFR.net, where went down the referral list of practitioners in my area that specialize in MTHFR and as I check the website of each, I find that many are anti-aging "wellness experts" that charge annual fees up to $3000. I am in good financial shape, I can afford it but I am also a wise person and red flags go up for me when I see very little about MTHFR buried in an abundance of information on botox and juvederm injections to appear more youthful.

I've got the youthful part down, just need a real medical professional to talk to about MTHFR and how it relates to peripheral neuropathy. :mad:

mrsD 01-27-2015 11:44 AM

I believe you can do quite a bit for yourself. Then if you need further help you could consider a specialist.

The MTHFR site allows questions. You can ask any you want there.

The heart of the issue is the methyl failure. So using methylB12 and methylfolate (in moderation), is a good start.

People who have B12 failures get nerve damage... when severe it is called combined degeneration of the spinal cord. I believe the peripheral effects are early on and as it progresses you get motor failure, blindness, dementia, and death.

We are only early on in the knowledge base of methylation failure. Even those specialist would be hampered by lack of knowledge. What is interesting from my point of view, the incidence of this has gone from 10% a decade ago, to up to 30-40% today. As research expands these numbers change.

beatle 01-27-2015 12:02 PM

Thank you Mrs. D. It is exactly what I am looking for, a specialist, not an antiaging doctor who wants to charge me an annual package cost for hormone replacement when I don't have a deficiency and Botox injections when I don't need to look younger. I don't need diet advice either as I've already got that covered.

I was prescribed Metanx two years ago but it has not helped. One of the supplements I take now is Pure Encapsulations B12 Folate with Metafolin and L-5-MTHF. I just started that but what I have not found is proper dosage for helping with MTHFR.

Marlene 01-27-2015 12:45 PM

You can call their office to see they'll see you for just the MTHFR consult. A half hour to an hour consult should be enough time. They most likely don't take insurance and charge from 250 -300/hour.


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