MTHFR mutation

[missy]

I am wondering if anyone here has experience with this genetic mutation and if so would you mind sharing. I am finding it all a bit overwhelming (despite having a strong science background) and would love to be able to discuss if possible. Thanks.

 

[AGBF]

I am wondering if anyone here has experience with this genetic mutation and if so would you mind sharing. I am finding it all a bit overwhelming (despite having a strong science background) and would love to be able to discuss if possible. Thanks.

I had never heard of it, although as soon as I read about it I thought I probably had it! (The old med student's syndrome!) I found this link, out of several I tried, to be the best at explaining the gene mutation, in case anyone else was as unenlightened as I was and wants to read about what it is.

I hope someone else can help you with some insight, missy!

PS-If you have this, you must have said so in a thread I did not read. Is that the case? Please point me to the thread.

MTHFR gene mutation...https://www.dietvsdisease.org/mthfr-mutation-symptoms-and-diet/

Deb

 

[missy]

I had never heard of it, although as soon as I read about it I thought I probably had it! (The old med student's syndrome!) I found this link, out of several I tried, to be the best at explaining the gene mutation, in case anyone else was as unenlightened as I was and wants to read about what it is.

I hope someone else can help you with some insight, missy!

PS-If you have this, you must have said so in a thread I did not read. Is that the case? Please point me to the thread.

MTHFR gene mutation...https://www.dietvsdisease.org/mthfr-mutation-symptoms-and-diet/

Deb

Hi Deb! Thank you for responding. No you didn’t miss it. I haven’t written about it anywhere.

I downloaded my raw genetic genome data to an interpretive site and have a homozygous mutation. That means I got it from both parents and it’s the worst type to have.

I am having trouble figuring it all out and navigating the myriad of info out there. Mainstream medicine does not yet have much to say about this so can’t look to them. Plenty about it in the alternative medicine field. But again I’m struggling to interpret.
Part of the problem is I have brain fog so that isn’t helping my attempts to figure it out.

I posted here knowing PSers have vast knowledge covering many topics. I figured it couldn’t hurt to see if anyone else has dealt with this. Though they say ignorance is bliss this explains many of my autoimmune conditions.

Thanks for reading my post and replying and thank you for that link.

(((Hugs))) to you Deb.

 

[AGBF]

Hi Deb! Thank you for responding. No you didn’t miss it. I haven’t written about it anywhere.

I downloaded my raw genetic genome data to an interpretive site and have a homozygous mutation. That means I got it from both parents and it’s the worst type to have.

I am having trouble figuring it all out and navigating the myriad of info out there. Mainstream medicine does not yet have much to say about this so can’t look to them. Plenty about it in the alternative medicine field. But again I’m struggling to interpret.
Part of the problem is I have brain fog so that isn’t helping my attempts to figure it out.

I posted here knowing PSers have vast knowledge covering many topics. I figured it couldn’t hurt to see if anyone else has dealt with this. Though they say ignorance is bliss this explains many of my autoimmune conditions.

Thanks for reading my post and replying and thank you for that link.

(((Hugs))) to you Deb.

I am really sorry that you got some potentially frightening news, missy. I would be very alarmed if I learned I had something new and unexpected. In fact, every time I am diagnosed with something new, something with which I later learn to live with complete familiarity, I panic! For instance, many, many years ago (at least 30) I was told I had mitral valve prolapse. One out of ten women in the United states has this. Mine is very benign. Now people no longer even have to pre-medicate before routine dental procedures, although when I was first diagnosed people did. When I first heard my diagnosis, however, I took it as almost a death sentence!

When i was reading about this gene mutation, I also read on that website:

"Remember that genetic testing is only a tool to support you in better health.

Having a genetic mutation does not necessarily mean it will affect you. In fact, it most likely won’t according the current stats.

As they say, “Genes load the gun, environment pulls the trigger.”

Always consult with a Dietitian or practitioner who can put your results into context. And eat more folate-rich foods… That goes for everybody."

Even as I was worrying that I, myself, might have the gene mutation, I was thinking that if I did I would try to eat right. I think I know you somewhat from Pricescope. I have seen how you handle difficult situations over the years. I do not think there is anyone better equipped than you to research and handle how to live in the most healthy way with a gene mutation. There may not be much information about it now, but what there is, you will find, and you will eat the right foods and probably suffer no ill effects. The future may bring far more information.

Of course I wish you luck, but you do not need it. You have fortitude and intelligence!

Hugs back at you, missy!!!

(((missy)))

Deb

 

[Shiny_pretty_things]

Hi,

I have a family member with this, are you referring to the SNPs C677T or A1298C?

 

[missy]

I am really sorry that you got some potentially frightening news, missy. I would be very alarmed if I learned I had something new and unexpected. In fact, every time I am diagnosed with something new, something with which I later learn to live with complete familiarity, I panic! For instance, many, many years ago (at least 30) I was told I had mitral valve prolapse. One out of ten women in the United states has this. Mine is very benign. Now people no longer even have to pre-medicate before routine dental procedures, although when I was first diagnosed people did. When I first heard my diagnosis, however, I took it as almost a death sentence!

When i was reading about this gene mutation, I also read on that website:

"Remember that genetic testing is only a tool to support you in better health.

Having a genetic mutation does not necessarily mean it will affect you. In fact, it most likely won’t according the current stats.

As they say, “Genes load the gun, environment pulls the trigger.”

Always consult with a Dietitian or practitioner who can put your results into context. And eat more folate-rich foods… That goes for everybody."

Even as I was worrying that I, myself, might have the gene mutation, I was thinking that if I did I would try to eat right. I think I know you somewhat from Pricescope. I have seen how you handle difficult situations over the years. I do not think there is anyone better equipped than you to research and handle how to live in the most healthy way with a gene mutation. There may not be much information about it now, but what there is, you will find, and you will eat the right foods and probably suffer no ill effects. The future may bring far more information.

Of course I wish you luck, but you do not need it. You have fortitude and intelligence!

Hugs back at you, missy!!!

(((missy)))

Deb

Thank you Deb! I appreciate your confidence. And right back at ya. No matter what life throws us we will do our best. (((Hugs)))

 

[missy]

Hi,

I have a family member with this, are you referring to the SNPs C677T or A1298C?

Hi Shiny pretty things. I’m sorry your family member has one or more of the mutations. I’ll share my specifics. Just did this last night so I am at the beginning of trying to make sense of it all. Though I’ve suspected for a while and have been reading about it. But again my brain fog is hindering my interpretation. Hard to believe I used to be intellectually sharp. Lol.

As you can see I have the homozygous C677T mutation.

 

[Arkteia]

I think I have one mutant gene and while the mutation it might be important, it is probably overrated.

There is a whole industry of vitamins around this mutation, and they are costly, btw.

I am suspecting, though, that it could be related to one interesting fact. The rate of spina bifida in Ireland is much higher than anyone else in the world, it was explained by the diet, but even when people from Ireland move to the US, it is still significantly higher (although lower than in Ireland). Maybe it has to do with the rate of the mutation. But this is just my own idea. Probably, the reality is more complex as most conditions are polygenic.

https://www.ncbi.nlm.nih.gov/pubmed/4861562

 

[Lorelei]

Missy, I just wanted to send you hugs and healing energy across the miles. And to you Deb too, you are such a support to many, you always have been. ((((())))) xoxo

 

[whitewave]

I think I have one mutant gene and while the mutation it might be important, it is probably overrated.

There is a whole industry of vitamins around this mutation, and they are costly, btw.

I am suspecting, though, that it could be related to one interesting fact. The rate of spina bifida in Ireland is much higher than anyone else in the world, it was explained by the diet, but even when people from Ireland move to the US, it is still significantly higher (although lower than in Ireland). Maybe it has to do with the rate of the mutation. But this is just my own idea. Probably, the reality is more complex as most conditions are polygenic.

https://www.ncbi.nlm.nih.gov/pubmed/4861562

Cystic Fibrosis too I believe

 

[diamondseeker2006]

A great local doctor here has written a little about it. I believe her children had adverse reaction to some vaccines and she did some research and did that testing and they had that gene mutation. I am sure there is much on the internet. I love this doctor because she's totally willing to admit that some things she was taught in med school are not true, and there are things that she was never taught. She is traditionally trained, but she now reads research on meds and vaccines and she studies intergrative medicine as well. She has the perfect combination of training and is very open minded about learning new things and putting aside things that she has found to be ineffective. Sadly there are few like her.

Here's an article from someone who HAS that gene mutation, and the information she has gathered. I have read other good posts by her in the past.

https://wellnessmama.com/27148/mthfr-mutation/

 

[missy]

Thank you @Arkteia , @Lorelei (((Hugs))) and @diamondseeker2006. And thank you again @AGBF.


@diamondseeker2006 -I love Wellness Mama and thanks for the link. She really is an excellent resource.

 

[stracci2000]

Missy, I read several of the links posted above.
It sounds like this is the root of some of your issues?
I hope you can work through all this and find some solutions!
Thinking of you and sending lots of hugs and healing vibes!!!

 

[AGBF]

Thank you @Arkteia , @Lorelei (((Hugs))) and @diamondseeker2006. And thank you again @AGBF.


@diamondseeker2006 -I love Wellness Mama and thanks for the link. She really is an excellent resource.

Thanks diamondseeker and missy for letting me know that Wellness Mama is a reliable website. I saw the same page that comes up at that website when I went to the website I posted that I liked early in this thread. It focuses on healthy living. I do not see that as the only solution to medical problems, of course. After all, how would one know what is healthy living if no one were doing scientific/medical research on the cause and the effects of a medical condition?

My GYN is into wellness (in a big way) and wanted me to take folic acid as a supplement. Therefore I was interested in the folate versus folic acid discussion on the pages posted in the discussion of the MTHFR gene mutation. I have to admit that i am struggling to understand some of the gene and disease implications of the discussion in this thread, but I will persevere!

Hugs to you, missy!

Deb

 

[Shiny_pretty_things]

Hi Shiny pretty things. I’m sorry your family member has one or more of the mutations. I’ll share my specifics. Just did this last night so I am at the beginning of trying to make sense of it all. Though I’ve suspected for a while and have been reading about it. But again my brain fog is hindering my interpretation. Hard to believe I used to be intellectually sharp. Lol.

As you can see I have the homozygous C677T mutation.

Me too

Did you have health issues that led you to suspect something? My experience of this is with my child who is also on the spectrum - so cause and effect, effect and cause, we're all still learning.

If you are neurotypical, and functioning well, its probably less of a concern. if its not too personal, what symptoms are you experiencing?

I'd look into B12 (methylcobalmin) injections to provide additional fuel and also folinic acid. Have you tried CoQ10?

The screen shots weren't too clear on my screen unfortunately so forgive me if I misunderstood anything. - it looks like you also have COMT snps? Meaning that potentially there are issues with blockages if you overdo the folates etc? So adding in GABA is a good idea, to calm things down.

 

[Shiny_pretty_things]

Hi Shiny pretty things. I’m sorry your family member has one or more of the mutations. I’ll share my specifics. Just did this last night so I am at the beginning of trying to make sense of it all. Though I’ve suspected for a while and have been reading about it. But again my brain fog is hindering my interpretation. Hard to believe I used to be intellectually sharp. Lol.

As you can see I have the homozygous C677T mutation.

Me too

Did you have health issues that led you to suspect something? My experience of this is with my child who is also on the spectrum - so cause and effect, effect and cause, we're all still learning.

If you are neurotypical, and functioning well, its probably less of a concern. if its not too personal, what symptoms are you experiencing?

I'd look into B12 (methylcobalmin) injections to provide additional fuel and also folinic acid. Have you tried CoQ10?

The screen shots weren't too clear on my screen unfortunately so forgive me if I misunderstood anything. - it looks like you also have COMT snps? Meaning that potentially there are issues with blockages if you overdo the folates etc? So adding in GABA is a good idea, to calm things down.

 

[HappyNewLife]

I am wondering if anyone here has experience with this genetic mutation and if so would you mind sharing. I am finding it all a bit overwhelming (despite having a strong science background) and would love to be able to discuss if possible. Thanks.

My wife has it, which has caused all kinds of issues as she recovers from Lyme disease. Her inability to detoxify on her own caused terrible burning sensations (neuropathy) on her skin for years. Once we found out about the mothereffer gene (hehe) and added methyl folate (15mg) to her daily supplements, the burning was gone!

 

[HappyNewLife]

Thanks diamondseeker and missy for letting me know that Wellness Mama is a reliable website. I saw the same page that comes up at that website when I went to the website I posted that I liked early in this thread. It focuses on healthy living. I do not see that as the only solution to medical problems, of course. After all, how would one know what is healthy living if no one were doing scientific/medical research on the cause and the effects of a medical condition?

My GYN is into wellness (in a big way) and wanted me to take folic acid as a supplement. Therefore I was interested in the folate versus folic acid discussion on the pages posted in the discussion of the MTHFR gene mutation. I have to admit that i am struggling to understand some of the gene and disease implications of the discussion in this thread, but I will persevere!

Hugs to you, missy!

Deb

Do not take folic acid! No one with the MTHFR gene should take it - which is in most multivitamins. You can only take methylated folate. Let me know if you wanna talk about supplementation - I’ve researched the heck out of this gene

 

[cmd2014]

I don't know much about this, but I thought this was a good write up about it (especially since they are testing for it).

https://blog.23andme.com/health-traits/our-take-on-the-mthfr-gene/

 

[missy]

Hi guys, thanks so much for your replies.

Do not take folic acid! No one with the MTHFR gene should take it - which is in most multivitamins. You can only take methylated folate. Let me know if you wanna talk about supplementation - I’ve researched the heck out of this gene

HappyNewLife I’m sorry about your wife dealing with this and so relieved she has found the right treatments for her! And Yes please if you could kindly share any supplementation info would be greatly appreciated. I am lost lol. Saw my internist this morning for my annual (that I was over a year late for haha) and he doesn’t know much about this mutation except to say scientific data is still in the works about it. I am currently taking methyl folate and methylated B12 but haven’t started supplementing with other recommended MTHFR supplements because I’m so confused. So any info you can share would be helpful thank you.

 

[missy]

Me too

Did you have health issues that led you to suspect something? My experience of this is with my child who is also on the spectrum - so cause and effect, effect and cause, we're all still learning.

If you are neurotypical, and functioning well, its probably less of a concern. if its not too personal, what symptoms are you experiencing?

I'd look into B12 (methylcobalmin) injections to provide additional fuel and also folinic acid. Have you tried CoQ10?

The screen shots weren't too clear on my screen unfortunately so forgive me if I misunderstood anything. - it looks like you also have COMT snps? Meaning that potentially there are issues with blockages if you overdo the folates etc? So adding in GABA is a good idea, to calm things down.

Thank you shinyprettythings. Appreciate the info. Im so sorry about your child and hope they find relief and do very well with whatever treatment plan you choose. I am not home now so cannot check my records but I have the homozygous C667T and the VDR and MTTR but don’t remember the specifics. I haven't tried CoQ10 or GABA. I don’t know anything about that.

I don't know much about this, but I thought this was a good write up about it (especially since they are testing for it).

https://blog.23andme.com/health-traits/our-take-on-the-mthfr-gene/

Thanks @cmd2014. I read that because I used 23 and me to get my genetic info. They used to interpret the data re MTHFR but no longer do so you just interpret it though another site. But they are repeating mainstream medicine advice and imo there are definitely people who are affected by this mutation and manifests in their symptoms and well being. However as with all things it’s complicated. Environment lifestyle genetics it all matters. It’s all very interesting but a little bit scary. So much we don’t know.

 

[missy]

Missy, I read several of the links posted above.
It sounds like this is the root of some of your issues?
I hope you can work through all this and find some solutions!
Thinking of you and sending lots of hugs and healing vibes!!!

Hi Stracci thank you. Yes I believe it could be and though there is no way to change one's genetic makeup I can prevent further damage by proper supplementation. The trick is figuring it all out because conventional medicine doesn’t know a lot about this area yet. Thank you for the (((hugs))) and right back at ya.

 

[HappyNewLife]

the Mothereffer gene (that's what I call it, since it IS an a-hole of a gene!) is quite dastardly and can be linked to heart problems, bipolar disease and so many other things. It manifested in my wife's family with a father with heart problems and a sister who is bipolar. My wife never knew of the gene (nor did the rest of the family) until our (I say our because I also have lyme) doctor had her tested for the gene. He explained the detoxification pathways and how this gene prevents proper detoxification and recommended starting methylated folate very slowly. If you do it too fast, you can get really jumpy and jittery (kind of like mania). So, he started her with 1mg/day. Then 3mg, 5mg, etc. She landed at 15mg/day and since then her neuropathy is non-existent. It went from having pain and burning on the majority of her body to none at all. We were shocked - she's tried everything!

We use methylpro (methylpro.com) 15mg - they have a blend with methylated VitB too, either of those are good. But I'd suggest trying a lower dose and slowly going up before landing at anything as high as 15mg/day.

 

[missy]

the Mothereffer gene (that's what I call it, since it IS an a-hole of a gene!) is quite dastardly and can be linked to heart problems, bipolar disease and so many other things. It manifested in my wife's family with a father with heart problems and a sister who is bipolar. My wife never knew of the gene (nor did the rest of the family) until our (I say our because I also have lyme) doctor had her tested for the gene. He explained the detoxification pathways and how this gene prevents proper detoxification and recommended starting methylated folate very slowly. If you do it too fast, you can get really jumpy and jittery (kind of like mania). So, he started her with 1mg/day. Then 3mg, 5mg, etc. She landed at 15mg/day and since then her neuropathy is non-existent. It went from having pain and burning on the majority of her body to none at all. We were shocked - she's tried everything!

We use methylpro (methylpro.com) 15mg - they have a blend with methylated VitB too, either of those are good. But I'd suggest trying a lower dose and slowly going up before landing at anything as high as 15mg/day.

Hahaha yes! I think of it that way too lol. The Mothereffer gene

Thanks for sharing what works so well for your wife.
2 weeks ago I started supplementing with Pure Encapsulations B12 Folate with metafolin L-5 MTHF which has 800 mcg of Folate S L-5 MTHF and 800 mcg B12 as Methylcobalamin. So a small dose for now. Not sure if I should add anything else. So just one pill that has both. I also am taking P-5-P 50 mg which has riboflavin B2 17 mg and B6 from pyridoxyl 5 phosphate 33 mg Now brand.

I’m going to look up what you use and wishing you both good health!

 

[missy]

FYI not sure I shared this here yet.

https://www.dietvsdisease.org/l-methylfolate-5-mthf/

 

[Tekate]

@missy I hope you feel better. Maybe if you follow what HNL suggests you will have brain fog lifted, but I can say by 65 it comes every day

Feel better, I believe in doing what is right for ones self and everyone is different and our genes will similar are different, I will keep watching to see how you are feeling and what is working.

I am sorry you have encountered this, feeling crappy and foggy is no fun.

sending you a huge old Irish lady hug ... xo

 

[missy]

@missy I hope you feel better. Maybe if you follow what HNL suggests you will have brain fog lifted, but I can say by 65 it comes every day

Feel better, I believe in doing what is right for ones self and everyone is different and our genes will similar are different, I will keep watching to see how you are feeling and what is working.

I am sorry you have encountered this, feeling crappy and foggy is no fun.

sending you a huge old Irish lady hug ... xo

Dear Kate, thank you and (((hugs))).

 

[CJ2008]

missy I know the brain fog must be no fun

I don't have anything to add other than I'm thinking of you.

 

[CJ2008]

sending you a huge old Irish lady hug ... xo

I want one too!

 

[kama_s]

I am only posting here because you’re asking for input, but no decent physician believes in mthfr mutations. It is really not based in science at all, and is really a money making business by shady naturopaths and some ‘integrative’ people.

Here is an excellent article on it:

https://sciencebasedmedicine.org/dubious-mthfr-genetic-mutation-testing/