MTHFR C677T Heterozygous and terrified

[wally10]

Hello!

As the title suggests, i have yesterday discovered i have the above gene mutation.

I have seen a complementary health kinesiology and alternative health practitioner as i new from blood tests i had an underactive thyroid (under range so no treatment)

My therapist gave me medication to heal the gut, cut out gluten and advised i take nutri thyroid.

Ive been doing this for a week, in which time the results came back from my 23&me test which showed the above gene mutation (along with others) but this is the big one i beleive.

I contacted her today as the supplements she prescribed are full of B vitamins and Folic acid which i thought were bad for us with this mutation. I spoke to her right away and she advised folic acid is in everything so i cant avoid it and the amount in the vitamins she gave me was minimal so should be ok? Is she right or am i over reacting?

This is just the start of my worries. I am so terrified about finding out the above information. Its knocked me sideways and i dont really know where to turn. I know my GP wont recognize it, where do i go, how can i see?

My dad dies from a brain heamorage which i am now convinced was due to a clot from this gene, my auntie also has chronic fatigue, again linked to the gene.

I am so frightened. I have 7 year old twins and a wonderful husband who i adore but i am so scared for my and their future. I dont know where to turn.

Is this a life sentence or can i move forward?

I felt really well up until march this year when my hair started to fall out and 2 career changes totally stressed me out. This is when all my problems started and i started trying to find out why.

Can anyone help or does anyone else have this mutation?

Thank you all

xx

[Barrister]

I know very little about this but just googling brings up a lot of information and one that looked particularly good( in my opinion) is the wellnessmama.com blog. Seems quite informative but not OTT. Hope you feel a little better once you've got a handle on this. Clemmie

[jimh111]

Genetic testing should not be carried out without counselling. I know nothing about this gene but a quick check throws up this webisite circ.ahajournals.org/conten... which states:-

The most common MTHFR mutation is called the MTHFR C677T mutation, or the “thermolabile” MTHFR mutation. Another common mutation is called MTHFR A1298C. To have any detrimental effect, mutations must be present in both copies of a person’s MTHFR genes. Having only one mutation, ie, being heterozygous, is, from a medical perspective, irrelevant.

Genetic testing is of dubious value without the considerable background knowledge required to interpret the results. I’d urge people not to bother with it.

[wally10 in reply to jimh111]

Thank you Jimh111.

That and your words have helped. I think my family history has just frightened me.

[Clutter]

Wally10, Just because you have a genetic mutations it DOES NOT mean you will necessary express it.

mthfrsupport.com.au/what-is...

You can avoid folic acid by looking for multi-vits with methylfolate.

Dr. Ben Lynch's protocol for MTHFR-C677T appears to be gut healing and gradual introduction and evaluation of supplements.

mthfr.net/mthfr-c677t-mutat...

[wally10]

Thank you all so far for your comments. If anyone else out there has the same mutation i would love to hear from you.

I just feel a bit alone and shocked by it.

I am working on healing my gut and already take sub ling b12 as i suspected this mthfr mutation or pernicious anemia due to my symptoms.

Thank you

x

[sulamaye in reply to wally10]

Firstly who advised you have the test, who carried it out? As said previously with out expert knowledge you are just frightening yourself. Something needs to switch genes on and stress is a factor so the first thing you need to do is stop panicking and get your head calm. Perhaps some meditation would be more helpful you can get 10 mins daily for free from headspace.com it gives great guidance.

I speak as someone who is bed and housebound by m.e and so has had to learn to handle some extreme and at times frightening symptoms. The last thing I have to try in my recovery is methylation and u suspect thru my brain fog that your gene has something to do with all that, but I am working with a dietician who I am sure when we get to testing knows her stuff and will be able to guide me.

My advice is optimise your thyroid yourself if necessary and focus on the symptoms you have and not a gene u don't yet fully understand and manage your stress reaction, learn some strategies for keeping your self calm and as cool about what is happening as possible.

[Martina]

Hello Wally, I also have your same gene mutation and the most informative site I'm aware of is the one given by Clutter as Dr Ben Lynch seems to be the expert in this field. I've recently listened to an interview by Dr Lynch and he admitted he was wrong to stress so much the importance of this genetic mutation as people tend to get too focused on this MTHFR thing and forget to look at the whole picture, their whole health condition. People with the mutation we have need to avoid synthetic folic acid, simply because the body can't convert it into methylfolate which is the most active form of folate ..so the synthetic folic acid would end up accumulating in our body...and the other important vitamin we should take is B12, preferably in the form of methylcobalamin...

I do my best to avoid synthetic folic acid, and I'm aware it's not easy as many B-complex and multivitamin supplements contain synthetic folic acid....Ben Lynch has devised a whole range of supplements called Seeking Health, and personally I rely on two other brands of supplements which are Pure Encapsulations and Thorne

Bear in mind that according to dr Lynch, if we avoid synthetic folic acid and daily eat our greens, we don't need to take methylfolate

I advise you look up Ben Lynch's website and maybe if you have the time listen to some of his talks.... He is very much into research and very knowledgeable on this matter as he also has this genetic mutation, but again, as I said, he doesn't want people to get bogged down just in this one mutation!!!

[wally10 in reply to Martina]

Thank you so much Martina for your reply. Nice to meet you!

I have been on Dr Bens website and yes, i found it useful.

I already started taking methylcobalamin b12 as i so strongly suspected a B12 deficiency. And i now and again took methyl folate, again, because i suspected a problem. However, it was still such a shock to see it there in black and white that i have the mutation.

I have gone gluten free, cut down dairy, dont drink alcohol, drink lots of filtered water etc.

My dietician advised me that i have a leaky gut and a very toxic body so needed gut healing. This is when she gave me a product called Nutrimonium which is full of B vits including Folic Acid. I want to take it as i want to heal my gut but i am reluctant as it has Folic Acid which i now beleive i should avoid. I did mention this to her but she advised folic acid is everywhere, i cant avoid it and the amount in this formulation wont harm me. I'm not so sure. I thought we had to avoid all synthetic forms? Or am i over reacting?

Which supplements specifically is it that you take? I have read its best to start off slowly to make sure you dont over meth, how do you know that is happening? Also do you do a detox or do you find that with your diet in order this is no longer an issue?

I first suspected PA or MTHFR because i became suddenly unwell, lots of joint inflamation, hair loss, pains in wrists, dizziness and have gone grey very early (i am 36 now). My tongue gets so sore and is always cracked.

Thank you again for getting back to me. It really helps

x

[Martina in reply to wally10]

Hello Wally, nice to meet you too! I do totally understand your shock at realizing you have this mutation, I was there as well, but remember also how good it is that you now know you have this mutation as this can give an explanation to your symptoms and you can take action to address the problem. But try not to get too bogged down in the MTHFR snip, as it's only one part of the whole picture.

Your dietician is right that many foods are fortified with (synthetic) folic acid, and according to Dr Lynch we have to avoid them. Choose supplements that contain L-5-MTHF or metafolin and try to eat leafy greens which contain folate, the natural form of folic acid the body can use.

A naturopath had also recommended I should take Nutrimonium from Metagenics, but this product didn't agree with me, I found it tooooo sweet and yes, it does contain synthetic folic acid. I had contacted the firm Metagenics on this isssue and I was told they're reformulating all their products in order to replace the synthetic folic acid with MTHF, and they added that even people with the MTHFR snip should be able to process some of the synthetic folic acid???

I think there aren't yet many health care practitioners who know precisely what to do with these genetic tests' results.

I have been taking Pure Encapsulations B-Complex Plus or Thorne Basic B complex as well as Metabolics Methylcobalamin in liquid form. Metabolics also do a B complex which I'd like to try and which contains MTHF. I've seen Metabolics B Complex has a lower dosage, so less likely to cause problems.

Dr Lynch said that if the dosage people are taking is too high for them causing hypermethylation, then they start feeling very unwell and they should stop the supplements, then start again at a lower dosage.

I'm sorry I can't give you more precise answers, but I'm also trying to learn more about this issue.

[Bluedragon]

Hi Wally10, as others have said, don't panic. 😀 I'm compound heterozygous for all the MTHFR snps- and loads of others too! I did 23andme.

It's a newish science, everyone is feeling their way I think through it.

I understand that some people actually prefer folic acid even though we're not supposed to tolerate it.

I keep meaning to run my raw data through- Nutrahacker I think it is- I believe they provide details of supplements to take.

I often end up at website phoenixrising if I google something, might be worth a look too.

[wally10]

Bluedragon I've done Nutrhacker and it does tell you what you should take and what you should avoid. I found it a bit confusing as some of my genes need methyl b12 but 1 or 2 of my mutations said i should avoid methyl b12. I think it recommended hydroxy B12? It is quite informative.

Martina,

Yes that is the product i was trying. It tasted awful. I havent taken it for 2 days and just went back to my D3 and B12 and i actually feel more tired so i think i will take it again tomorrow. I am also taking Nutri Thyroid as advised by my alternative therapist.

I will have a look at the supplements you have, the metabolics sound good.

Its nice to meet people in the same boat. And you are right, i have to use this as an oppertunity to help myself. The frustrating thing is that up until April i felt completely well and normal. This all came on really suddenly. Did anyone else find that or was it a gradual getting unwell?

[Martina in reply to wally10]

Wally, I'm also confused about the use of the B12 supplements as I had read that for certain genetic mutations methylcobalamin is not the appropriate one, and a pharmacist suggested I'd better take hydroxycobalamin or adenosylcobalamin to keep on the safe side.

Pure Encapsulations have launched a new product which is hydroxycobalamin and adenosylcobalamin combined in one capsule. Each capsule has a strength of 2000mcg, and I don't know if this strength woluld be too high. Does anyone have any comment on this?

Thank you

[wally10]

Martina

That's coincidence. I have been reading about this today. Some of my mutations mean I should take hydroxy b12 so I have ordered some today to try.

The product you suggest sounds good. Maybe you could start of low taking just a quarter, then half etc and see how it goes? Please let me know if you try some!

Where in the country are you Martina? We are in Shropshire! I've just posted about a nutritionist in leeds that seems well informed on mthfr.

[Dizzy341]

Dr Ben lynch of seeking health.com and on FB will give you all the info and supplements you need. His multi vits are designed with methyl folate. Good luck

[Dizzy341]

And you want stop the thyroid madness book/website ftpo thyroid Facebook pages. Mary shomon, Izabella Wentz good places to start for thyroid info