MTHFR and E4/E4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
WifeOfJoel
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Re: MTHFR and E4/E4

Postby WifeOfJoel » Mon Jan 07, 2019 3:13 pm

Torimintz wrote:THanks for the info on rs1133 . I am G/G on 23 and me

But, what about rs1131. I am T/T on 23ANDME, Is that the bad one?
Thanks.
It is all so confusing


As Its Me said, you are the "good one" here as well!

This is how you can "convert" your values in 23andme to SNPedia's:
Look up each gene of interest on SNPedia, do you see in the upper right where it says "orientation"?
If the orientation is plus, do nothing to your 23andme value. An "A" is an "A," a "G" is a "G" and so forth
If the orientation is minus, then switch whatever bases you see on 23andme to the opposite bases (also known as nucleotides):
A becomes T
T becomes A
C becomes G
G becomes C

So in your example, you had G/G on 23and me, but on SNPedia, it says "minus" so you convert the G's to C's. And for the other one, it's also minus, so your T/T becomes A/A.

Hope that helps. That's really it!

Would it be helpful if I made a Youtube video on hacking your raw data from 23andme? I've been wanting to! :)

physician scientist
Me: APOε3/3, MTHFR (C677T) homozygote
Partner: APOε4/4
Mother: APOε3/4

roxanne
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Re: MTHFR and E4/E4

Postby roxanne » Mon Jan 07, 2019 8:14 pm

WifeOfJoel wrote:
roxanne wrote:For the MHTFR mutation my FM physician recommended Methyl Assist by Pure Encapsulations one pill twice a day and Homocysteine Factors again from Pure Encapsulations one pill twice a day. It does get to be expensive, though as Methyl Assist is $40.00 and Homocyseine Factors is $51.00. Methyl Assist lasts 1.5 months and Homocysteine Factors 3 months at the above dosage.


Roxane,
Do you know why he recommended you take both? They seem to contain the same ingredients (methyl folate, methyl B12, and B6), at slightly different ratios, and then either betaine or benfotiamine (I don't know anything about the latter). I'm guessing he wants you at a ratio in between the two formulations, or wants you to take both betaine and benfotiamine? I'm trying to decide if I need both, or can get away with just one (or maybe an even cheaper one)...


Yes, she wants me to take the betaine, as she feels that way we can lower my homocysteine which is at 9.1. I will test soon and I will let you know if the homocysteine lowers or stays the same before you buy the homocysteine factors. I think you can start with Methyl Assist and then tweak accordingly. Of course it depends if your homocysteine is high.

If you have other questions, please ask.

WifeOfJoel
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Re: MTHFR and E4/E4

Postby WifeOfJoel » Tue Jan 08, 2019 1:32 am

roxanne wrote: I will test soon and I will let you know if the homocysteine lowers or stays the same before you buy the homocysteine factors. I think you can start with Methyl Assist and then tweak accordingly. Of course it depends if your homocysteine is high.

If you have other questions, please ask.


Thanks, Roxane! Yes, my homocysteine is 11.2; I'm guessing because I'm homozygous for the C677T allele of MTHFR.

Did you see any value in testing for methylmalonic acid (MMA)? I am thinking it could be useful to test for functional B12 deficiency in the context of a B12 level within normal limits, but even if it's elevated, I am not sure if that would change management.

physician scientist
Me: APOε3/3, MTHFR (C677T) homozygote
Partner: APOε4/4
Mother: APOε3/4

roxanne
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Re: MTHFR and E4/E4

Postby roxanne » Tue Jan 08, 2019 4:12 pm

WifeOfJoel wrote:
roxanne wrote: I will test soon and I will let you know if the homocysteine lowers or stays the same before you buy the homocysteine factors. I think you can start with Methyl Assist and then tweak accordingly. Of course it depends if your homocysteine is high.

If you have other questions, please ask.


Thanks, Roxane! Yes, my homocysteine is 11.2; I'm guessing because I'm homozygous for the C677T allele of MTHFR.

Did you see any value in testing for methylmalonic acid (MMA)? I am thinking it could be useful to test for functional B12 deficiency in the context of a B12 level within normal limits, but even if it's elevated, I am not sure if that would change management.


Hi WifeofJoel: Actually we didn't even thought about testing because my B12 was high normal and anyway we were going to manage the methylation problem with Methyl Assist. Everyone is different though, and I believe it's better to start the Methy Assist and then do the MMA test in 3 months, and then tweak from there. This is of course just my opinion. Anyway my homocysteine was 11 at the start of treatment. It is now at 9.1. Just a word of caution, when I started taking the Methyl Assist, I became constipated and had to take Magnesium Citrate to tolerance to get relief. I would start with one pill a day for a week and then 2 a day, one in the am and one at night.

I'm sorry I cannot be of more assistance but it all depends on what you are trying to accomplish taking into consideration that we are all different and have different genetics and lifestyles.

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Re: MTHFR and E4/E4

Postby Its Me » Wed Jan 09, 2019 6:50 am

roxanne wrote: … my B12 was high normal and anyway we were going to manage the methylation problem with Methyl Assist … my homocysteine was 11 at the start of treatment. It is now at 9.1 ... I became constipated and had to take Magnesium Citrate to tolerance to get relief.

Roxanne - What is the recommended test level of B12 (yours is high normal) ? My level for homocysteine is 8, someone noted below 7 was ideal. I have 2 T/T MTRF mutations, and having done nothing about B vitamins feel that 8 naturally is pretty good.

Looking at Methyl Assist, that has the top limit of 1000, are you going so high because of the need to get the homocysteine down a good amount? Do you believe the folate in food just is not being processed much or at all (otherwise adds to the total level)? Did you try a lower level first, I see other brands are in the normal dose recommended (400).

A thought on the magnesium - my blood level was low in the hospital one visit so I supplement as insurance and there seems no problem doing so unless your bowels loosen, and you cut back. Many of us on another forum take the following: glycinate that is chelated to optimize bioavailability (has more elemental magnesium). I take one a day (250, not 100 as in image). https://www.amazon.com/gp/product/B000BD0RT0/?th=1

Its Me
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Re: MTHFR and E4/E4

Postby Its Me » Wed Jan 09, 2019 6:52 am


roxanne
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Re: MTHFR and E4/E4

Postby roxanne » Wed Jan 09, 2019 7:33 pm

Its Me wrote:
roxanne wrote: … my B12 was high normal and anyway we were going to manage the methylation problem with Methyl Assist … my homocysteine was 11 at the start of treatment. It is now at 9.1 ... I became constipated and had to take Magnesium Citrate to tolerance to get relief.

Roxanne - What is the recommended test level of B12 (yours is high normal) ? My level for homocysteine is 8, someone noted below 7 was ideal. I have 2 T/T MTRF mutations, and having done nothing about B vitamins feel that 8 naturally is pretty good.

Looking at Methyl Assist, that has the top limit of 1000, are you going so high because of the need to get the homocysteine down a good amount? Do you believe the folate in food just is not being processed much or at all (otherwise adds to the total level)? Did you try a lower level first, I see other brands are in the normal dose recommended (400).

A thought on the magnesium - my blood level was low in the hospital one visit so I supplement as insurance and there seems no problem doing so unless your bowels loosen, and you cut back. Many of us on another forum take the following: glycinate that is chelated to optimize bioavailability (has more elemental magnesium). I take one a day (250, not 100 as in image). https://www.amazon.com/gp/product/B000BD0RT0/?th=1

Hi Its Me (love the name)
My B12 level is 925, but my FMD says it's OK to take that high a dose as I'm compound heterozygous for MTHFR. My homocysteine is at 9.1 and we want to lower it to 7, which I find impossible at this point. I used to have a level of 7 when I was eating higher carb, go figure. I've read, I do not remember where, that carbs increase the level, in my case it is the opposite.

I have taken the Methyl Assist at the same levels since I started supplementing.

As for the magnesium, I do take 400mgs of Magnesium Glycinate (elemental). The Citrate is just for constipation and it does work for me.

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Re: MTHFR and E4/E4

Postby Its Me » Thu Jan 10, 2019 9:30 am

roxanne wrote:My B12 level is 925, but my FMD says it's OK to take that high a dose as I'm compound heterozygous for MTHFR. My homocysteine is at 9.1 and we want to lower it to 7.

Roxanne, I appreciate what your doctor is doing. It does not sound like there is a high level B-12 issue from supplements or food. I am also c.h. for MTFR. This gov't fact sheet helps with my understanding a bit more on B-12 deficiency and includes with folate:
https://ods.od.nih.gov/factsheets/Vitam ... fessional/

Your h. goal of 7 is good and seems recommended for those with this problem. Although other sources say under 10 is good. You seem to have made good progress. I feel OK with my 8, but I'm making some adjustments. The fact sheets say folate and maybe other B's have more bioavailable absorbed if on an empty stomach (supplement), and is high absorption for folic acid over food sources. I'll start with that in a B complex supplement and revisit my tests. The B-12 interesting point for me is that 30% of those over 50 have an absorption issue because of less stomach acid, and have better absorption from supplements over food sources.

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Re: MTHFR and E4/E4

Postby roxanne » Fri Jan 11, 2019 1:10 pm

.[/quote]appreciate what your doctor is doing. It does not sound like there is a high level B-12 issue from supplements or food. I am also c.h. for MTFR. This gov't fact sheet helps with my understanding a bit more on B-12 deficiency and includes with folate:
https://ods.od.nih.gov/factsheets/Vitam ... fessional/

Your h. goal of 7 is good and seems recommended for those with this problem. Although other sources say under 10 is good. You seem to have made good progress. I feel OK with my 8, but I'm making some adjustments. The fact sheets say folate and maybe other B's have more bioavailable absorbed if on an empty stomach (supplement), and is high absorption for folic acid over food sources. I'll start with that in a B complex supplement and revisit my tests. The B-12 interesting point for me is that 30% of those over 50 have an absorption issue because of less stomach acid, and have better absorption from supplements over food sources.[/quote]

Its Me, yes 7 is a good goal, but frankly for me 9.1 is pretty good. I'm OK with it if it doesn't come down. We really are not sure if manipulating those numbers will have better outcomes and you need to choose your battles. In any case, your 8 is great and closer to your goal. Please let us know if your adjustments work for you.

Roxanne


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