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Help a lost soul with MTHFR issues in the UK?

M

Maggie28

Messages
4
I am compound heterozygous for MTHFR, and have been doing the best I can to figure things out for myself; I have been unable to find any kind of practitioner near to where I live (the wilds of Yorkshire in England) who has any clue whatsoever about methylation issues. I'm at the point where I really need some advice, but don't know who to ask.

I have been taking 800 mcg of Methylfolate (Solgar) and 5000 mcg of Methyl B12 (Jarrow) daily for several months now, since getting my original results, along with a few other carefully chosen supplements. A few weeks ago I read Fredd's protocol, and introduced some new things, specifically Potassium and Fish Oil with high Omega 3. I also took B-Right (Jarrow) but thought I was overdoing the B12 dose given that it was on top of the Methyl B12. I ordered the 'country life' supp (sorry, can't remember the particular name right now) but decided against it when I realised it contained folic acid which, of course, is out of bounds for me.

When I started on the methyl forms, I felt like a completely new person; energised, sleeping really well, amazingly good mood etc, but over time this has gradually dissipated, to the point where I am beginning to feel like I am crashing. It may be that this is part of the detox process and I have to work through it, but I'm concerned that I might be doing something wrong supps wise, through ignorance.

If anyone could take a look at my genetic genie results below and comment, I would be very, very grateful.

If it helps, as well as the things listed above, I'm taking the following:

vitamins C & D
Magnesium (through skin)
Zinc
Turmeric
Glucosamine
Eyewise

So here are the Genetic Genie results:

COMT V158M +/-
COMT H62H +/-
COMT P199P -/-
VDR Bsm -/-
VDR Taq +/+
VDR Fok-I (not found)
MAO A R297R +/-
ACAT1-02 -/-
MTHFR C677T +/-
MTHFR 03 P39P +/-
MTHFR A1298C +/-
MTR A2756G -/-
MTRR A66G +/-
MTRR H595Y -/-
MTRR K350A -/-
MTRR R415T -/-
MTRR S257T not found
MTRR A664A +/-
BHMT-01 not found
BHMT-02 -/-
BHMT-04 -/-
BHMT-08 +/-
AHCY-01 -/-
AHCY-02 -/-
AHCY-19 -/-
CBS C699T -/-
CBS A360A -/-
CBS N212N -/-
SUOX S370S not found
NOS3 D298E not found
SHMT1 C1420T +/-

Any ideas?
 
Critterina

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
My first thought is to wonder whether you're getting enough metafolin, considering your SNPs. Have you tried increasing it? I was given that ratio of about 1 mg mfolate to 5 mg mB12, and it wasn't right for me. I'm doing much better now with 3 mg of each, spread out to 3 doses during the day. Also, take Vitamin C well away from the mfolate and the mfolate on an empty stomach. If you're not doing it already, those are some gentle tweaks that might help.

also, have you tried stopping the glucosamine? just for a trial?

Best wishes for feeling great again!
 
Gloria H

Gloria H

Messages
80
Location
South Dakota
Freddd has introduced us to the concept that so many people are B12 & folate deficient. But as we use B12 & folate, sometimes we run into another deficiency, something that works with B12 & folate. You didn't mention using L-Carnitine Fumerate, part of Freddd's "Deadlock Quartet". Check the link below for other ideas of how to keep your recovery going:
http://forums.phoenixrising.me/inde...g-so-far-what-does-it-mean.23427/#post-358705
Blessings to you!
 
caledonia

caledonia

Senior Member
Messages
4,610
Location
Where the land is hilly and they eat hot chili
You actually have some pretty clean looking SNPs outside of the double MTHFR mutation and a couple of MTRRs (B12 recycling).

I believe you're experiencing metal detox (a good thing) and just need to slow down methylation by reducing doses until you're comfortable. Even if you totally stopped the supps, methylation will keep cranking for awhile (could be weeks).

So I suggest stopping until you feel comfortable again, then restarting at much lower doses. You will still be detoxing even though you can't feel it. You can gradually ramp it back up again as tolerated.
 
M

Maggie28

Messages
4
Thank you, kind people.

I've ordered the L-Carnitine Fumerate (and some adenoB12). Otherwise, I'll use trial and error to find out what works for me. Today I tried upping the folate quantity, but felt worse than ever (but had already taken the usual high Methyl B12 does before I'd read these replies). Will experiment with stopping altogether as you suggest, Caledonia, and have now stopped the Glucosamine (thanks for that suggestion Critterina).

Al, have you managed to find a practitioner here in the UK? I told my GP about my MTHFR results, and he said "What's that?". I then saw a nutritionist who seemed reasonably up to date, but I had to educate him about it.

One thing I just can't work out: I read over and over again that folic acid is to be avoided, yet it is in Yasko's 'all in one' multi-vitamin as well as others I've seen recommended. What's that all about?
 
M

Maggie28

Messages
4
I bought Pure Bio (Pure Encapsulations?) capsules - 1000 mcg of adenosylcobalamin and nothing else in them. Wasn't quite sure whether to get them or a liquid version from another company, but that was all I could find.
 
A

Al Klein

Senior Member
Messages
101
Location
United Kingdom (Buckinghamshire)
I am not sure about liquid - given that the tablets need an hours in contact with the inside of the mouth I am not sure how one would achieve that with liquid!

I ordered from iherb in the end - takes a few weeks, but MUCH cheaper than UK prices (unless customs intervene of course!)
 
M

Muttlee

Messages
1
Hi, Maggie28 and Al Kein,
I recently obtained MTHFR and hundreds of other reports and am flumoxed. I live in Leeds and have 23&me.com, NatGeno, Livewello and Genetic Genie reports.
Can you advise?
 
M

Mel_cr

Messages
2
Al Klein said:
I agree about the L-Carnitine Fumerate, adding that and a small quantity of adenoB12 has helped me a lot.

I am UK as well, so let me know if I can help at all!
Click to expand...

Hi there I'm in London and was wondering would you be able to help me interpret my 23andme results? I'm completely lost!
Mel
 
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