Anyone else out there suffer from MTHFR Defiency?

Becky0582

So I recently found out have MTHFR Defiency, which stands for Methyltetrahydrafolatereductase Defiency, which obviously has to do with pregnancy and the way my body absorbs folic acid... After suffering 2 miscarriages, my dr ordered extensive blood work which in turn came out with this diagnosis...I got 2 copies of the bad gene and have to take extra folic acid and a baby aspirin in addition to my prenatal... Anyone else out there have this and how has it effected you?

mthfrsupport

I have MTHFR and am the owner of MTHFR support on facebook and MTHFRsupport on the web. I work with some of the top researchers in the World. I'm trying to raise awareness on methylenetetrahydrofolate reductase enzyme deficiency. I have many informative lectures and am listing doctors that know about MTHFR and other genetic SNP's (sinfular neucleotide polymorphisms) on the methylation pathway. First I must tell you to make the word folic disappear out of your vocabulary. Folic=bad and folate=good. With MTHFR we have trouble converting folic into folate which is the active methyl donor form needed to convert amino acids such as homocysteine into methionine synthase. Our homocysteine levels should stay in between 6-8 for optimal methylation of toxins. When we have and MTHFR gene mutation, we have trouble keeping adequate levels of glutathione in the body in order to reduce oxidative stress and remove environmental toxins from the body. We cannot take glutathione and obtain optimal results because our methylation cycle is jammed well above glutathione synthase. Many of us with MTHFR, depending on mutations, have trouble with norepinepherin, seratonin, dopamine and epinepherin. The A1298C's have trouble breaking down ammonia in the body because of lack of BH4/tetrahydrobiopterin. These are the examples of what forms of active b vitamins you should be taking. b9 methylfolate/5MTHF/folate as in quatrefolic which I believe is a 4th generation folate. b6 P5P/pyridoxal 5 phosphate and b12 methylcobalamin. Forms that people with MTHFR have trouble converting folic acid, b6 PHCI and b12 cyanocobalamin (yes cyanide phosphate 3'). STAY AWAY from synthetic b vitamins. Dr. Ben Lynch at MTHFR.net can help you out and also I have lectures from some of the top researchers in the World on this subject at MTHFRsupport.com. Things that are quite common with MTHFR: Spina bifida, neural tube defects, autism, Down Syndrome, repeated miscarriage, still born, autism, just to name a few. Which can all be avoided by knowing your MTHFR status, finding a doctor who knows about the subject (I look for doctors daily for people), becoming proactive now that you know the root cause, avoiding vitamins and foods fortified with synthetic b vitamins and getting the most out of and organic diet and active methyl donor b vitamins. Being cautious about childhood vaccinations on your children since thimerasol (mercury), formaldahyde and aluminum to name a few of the preservatives, deplete glutathione that we are already lacking and cause brain damage during brain developmentation. This is just a short version of what is needed to know. There are tons of active b vitamins to put in your system. Please contact me or doctor Ben Lynch if you would like to know anymore.

emw0072

Please go to Dr Stephen Smith's website-www.nwhealthcare.net search MTHFR on this website. Then go to you tube and search Dr Neil Rawlins. Listen to his lecture series and there will be a protocol to show your doctor. You can also google Dr. David Brownstein. Swanson Vitamins has a great product calledc "Activated homocysteine calm". Another avenue is Pam Labs. They carry prescription food supplements called Metanx and Deplin.

People with MTHFR should not have the following:

No vaccinations of any kind
No metal in your body except titanium
No metal in your mouth- silver amalgam fillings or metal in bridges
No estrogen- birth control or Bio identicals
No Tylenol

Google MTHFR and drugs. There will be a list of medications we should not take.

Consult all of this with a doctor if you can find one in your area. I would look for an integrative doctor or functional doctor.

ALittleBirdie75

Just curious if you know why it is difficult to lose weight when you have the MTHFR deficiency? I have been working with a fantastic doctor to reduce my internal inflammation, fix my methylation issues and all the other 'stuff' that goes with this mutation however I'm really concerned that I can't seem to lose weight. I've addressed this with my doctor and she said she is more concerned at this point with reducing the inflammation and says that the weight lose will come. I've been working with my doctor and a nutritionist for about 2 years now and I've only lost 13 pounds. I've definitely reshaped my body because I'm also down two pants sizes and three dress sizes which is great; I'm not discounting that. I'm just concerned because I am very heavy on my hips and thighs and am concerned that eventually I will have problems with my knees and hips. Is this something I need to be concerned about or will the weight loss just come naturally as the inflammation reduces? I have another appt with my doctor in a couple of weeks but I'm really starting to reach a desperation point. Any advice would be appreciated!

dvnjustina

I have it, and apparently I'm unaffected by it. All the women in my mom's family have the same mutation. No one has any extreme health problems besides being overweight. I don't sweat it since I have a healthy diet and no underlying health problems.

seaturtlepb

After a miscarriage three years ago for an IVF pregnancy, my ob/gyn had me tested for MTHFR. The result was positive. She had me start taking a baby aspirin and prescription folate very day and now I have very healthy twin 2 year old boys! I have just started researching this condition and how it relates to weight loss and general health, so I would appreciate any insight anyone has to share.

MissMaggie3

Hello all!

I have recently found out that I have the compound heterozygous mutation. I'm waiting for a homocysteine test to be done, but am anxious to start on supplements. I'm researching as much as I have time for on the internet, but gosh, the science baffles me a bit!

ShelleyLo

I have a homogenous pair of gene mutation for MTHFR and I cannot lose weight. One doctor told me to get gastric bypass. I am disgusted every time I look in the mirror. Any help out there?

MissMaggie3

Hello ShelleyLo.

Which mutation do you have? The C677T or A1298C? Have you had your homocysteine level tested? Does fatigue and / or depression play a part in your weight issues?

So sorry to bombard you with questions, but I think it could help to check that you are getting treated for the MTHFR thing properly first.

cw3j

I am heterozygous 677 and cannot stop gaining weight. I can't find very much online that talks about mthfr mutations and their effect on weight loss/gain. Does it really effect my ability to lose weight or is it likely to be something else? I'm seeing a hormone replacement doctor who seems to be the best equipped for this sort of thing compared to the specialists I have seen. My inability to lose weight started after pregnancy (8 years ago). I have always been able to lose weight. I've had all sorts of labs done and there are some borderline issues but nothing that screams "this is why you're gaining weight!" Any advice? I'm on a supplement called Methyl Protect for almost 3 weeks but haven't noticed anything.

MissMaggie3

Sorry, cw3j, I haven't seen anything online either. In fact, there just isn't much information out there at all, other than the really scientific stuff. I think it is because it has only relatively recently been 'discovered' as an issue.

But there is a very active Yahoo group - why don't you join and ask there? It's called MTHFRdiscussions . Not sure if you can get to it from here, but I'll post anyway. You will need to sign up to Yahoo.

http://health.groups.yahoo.com/group/MTHFRdiscussions/

cw3j

Thanks MissMaggie3 I will check out that yahoo! group ASAP.

StarChanger

I have MTHFR and am the owner of MTHFR support on facebook and MTHFRsupport on the web. I work with some of the top researchers in the World. I'm trying to raise awareness on methylenetetrahydrofolate reductase enzyme deficiency. I have many informative lectures and am listing doctors that know about MTHFR and other genetic SNP's (sinfular neucleotide polymorphisms) on the methylation pathway. First I must tell you to make the word folic disappear out of your vocabulary. Folic=bad and folate=good. With MTHFR we have trouble converting folic into folate which is the active methyl donor form needed to convert amino acids such as homocysteine into methionine synthase. Our homocysteine levels should stay in between 6-8 for optimal methylation of toxins. When we have and MTHFR gene mutation, we have trouble keeping adequate levels of glutathione in the body in order to reduce oxidative stress and remove environmental toxins from the body. We cannot take glutathione and obtain optimal results because our methylation cycle is jammed well above glutathione synthase. Many of us with MTHFR, depending on mutations, have trouble with norepinepherin, seratonin, dopamine and epinepherin. The A1298C's have trouble breaking down ammonia in the body because of lack of BH4/tetrahydrobiopterin. These are the examples of what forms of active b vitamins you should be taking. b9 methylfolate/5MTHF/folate as in quatrefolic which I believe is a 4th generation folate. b6 P5P/pyridoxal 5 phosphate and b12 methylcobalamin. Forms that people with MTHFR have trouble converting folic acid, b6 PHCI and b12 cyanocobalamin (yes cyanide phosphate 3'). STAY AWAY from synthetic b vitamins. Dr. Ben Lynch at MTHFR.net can help you out and also I have lectures from some of the top researchers in the World on this subject at MTHFRsupport.com. Things that are quite common with MTHFR: Spina bifida, neural tube defects, autism, Down Syndrome, repeated miscarriage, still born, autism, just to name a few. Which can all be avoided by knowing your MTHFR status, finding a doctor who knows about the subject (I look for doctors daily for people), becoming proactive now that you know the root cause, avoiding vitamins and foods fortified with synthetic b vitamins and getting the most out of and organic diet and active methyl donor b vitamins. Being cautious about childhood vaccinations on your children since thimerasol (mercury), formaldahyde and aluminum to name a few of the preservatives, deplete glutathione that we are already lacking and cause brain damage during brain developmentation. This is just a short version of what is needed to know. There are tons of active b vitamins to put in your system. Please contact me or doctor Ben Lynch if you would like to know anymore.

Great explanation, for those of us who have taken advanced biochem courses and needed a little reminder (seriously...nice job! :drinker: ).

MissMaggie3

I'm a bit confused about something - can anybody help?

My nutritionist doesn't want to start me on any treatment (other than gut repair) until we've had my homocysteine results back (another couple of weeks yet). I'm anxious to start on treatment, but he says we have to wait because he doesn't know if my gene is 'under or over-expressing'. My question is, wouldn't methyl folate and methyl B12 be useful whichever it was? Aren't we simply trying to redress a mutation?

Just a long-shot!

MissMaggie3

Just wanted to tell the world - I took things into my own hands and started treatment myself, and I feel FANTASTIC! :happy:

Took Methyl B12 on its own for a few days with no problems, then I introduced Methylfolate. The change has been amazing - deep fatigue has melted away and I now feel positive and optimistic (I hadn't realised how low my mood had sunk). I have heard that adverse reactions can happen in the second week of treatment, and I'm very much hoping that isn't the case for me.

I now feel very strongly that everyone should get tested for MTHFR mutations; let's spread the word!

(P.S. I posted this in another MTHFR thread, so you are not having cognitive issues if you think you have seen this before!)

jmaples77

http://circ.ahajournals.org/content/111/19/e289.full

I have suffered 3 miscarriages within 8 months and finally it was deemed appropriate to be tested. I am homozygous. Not sure which mutation, but I am being referred to a Maternal-Fetal specialist. The above link is an article that was very informative and easy to understand. Hope it helps.

jmaples77

@Seaturtlepb. Thank you for posting this. There is hope!

cgold67

I discovered I have the MTHFR deficiency after having 5 miscarriages and it appeared to be the cause as now I have have three healthy beautiful children. It is hard to say if I suffer from other symptoms as I also have Addison's disease which is a rare adrenal disease clearly affecting your energy levels, etc. As far as weight gain I have had no issues in that area and was able to lose all of the weight after three succesful pregnancies.

must_deflate

I know this thread is old, but I'd like to revitalize it.
I learned a few days ago that I have the MTHFT mutation on both sites (677 and 1298)-- one bad gene on each site which means I'm "compound heterozygous". That's supposed to be one of the two or three worse possible permutations of the gene.

I just started methyl-B12 and am looking forward to starting the methyfolate in a couple days.

This explains a hell of a lot of my family history-- No one is fat or smokes, everyone eats pretty well and is active, yet people get heart disease in their late 60's or 70's. Plus there is a history of depression and anxiety on one side. And one autistic person (98% of autistic people have the mutation.) Personally, I take meds for depression and anxiety and I have always had a problem with low energy despite a pretty healthy lifestyle.

If the supplements help me, I'm going to tell all my relatives.

Anyone else have experience with this?

Guns_N_Buns

I read that as motherf****r deficiency.

Carry on.

must_deflate

I read that as motherf****r deficiency.

Carry on.

Yeah, so do I, still ! And it *is* a subtle little motherf***r of a problem. But easily remedied, fortunately!