MTHFR and ttc... who else is with me?

[dodgercpkl]

I'm pretty sure I will too. I hate hate HATE needles, but if it gives me a living baby at the end, then I'll do it with a smile on my face the whole time. >.< I'm very glad you don't seem to have the same serious issues that your sisters have had. *hugs* I'm even more glad that you knew about it in advance.

I know that my whole family is now going to be tested for MTHFR. I mean if I have dual copies of it, then that means that at the very least, both of my parents are carriers, and it could mean that one or both of them have the same version that I do. The thing that scares me the most about this is reading about things like b12 deficiency and the problems it can create (or simulate) like serious brain loss/issues, alzheimers, etc. I look at the symptoms listed and I could have been exhibiting some of them for a while! Since I now know that my body has trouble absorbing b12, I think it's a very real potential issue for me.

 

[Storked]

I may eventually have problems- it was pregnancy that caused lifelong problems for my sisters. I have only been pregnant once and miscarried but in the future, who knows? I hope I am ok
It is scary but so glad that your family is being tested! It is so serious. Is there any sort of treatment to help you absorb the nutrients that you need? Or have they not studied that one yet?

 

[dodgercpkl]

What I've read so far from multiple sources is to take the active forms of b vitamins. Folic Acid just doesn't work for me, and honestly the more I read about it, the more I feel like it doesn't seem to work for anyone.

On my own, I've decided to switch up all of my vitamins to the active forms, so I'm using Emerald Labs Prenatals (all active vitamins including L-5 Methyl Tetrahydrofolate instead of Folid Acid and Methylcobalamin instead of 'normal' b12). Instead of my body having to process the vitamins to turn them into useful things for my body (which it doesn't do well), these forms ARE the useful things and don't need to be processed into something else.

Obviously, we'll have to see how well I did in changing when I get to the RE's appointment in 11 days. lol

 

[Storked]

What I've read so far from multiple sources is to take the active forms of b vitamins. Folic Acid just doesn't work for me, and honestly the more I read about it, the more I feel like it doesn't seem to work for anyone.

On my own, I've decided to switch up all of my vitamins to the active forms, so I'm using Emerald Labs Prenatals (all active vitamins including L-5 Methyl Tetrahydrofolate instead of Folid Acid and Methylcobalamin instead of 'normal' b12). Instead of my body having to process the vitamins to turn them into useful things for my body (which it doesn't do well), these forms ARE the useful things and don't need to be processed into something else.

Obviously, we'll have to see how well I did in changing when I get to the RE's appointment in 11 days. lol

Fingers crossed! Keep me posted because I want to know more too

 

[dodgercpkl]

Definitely will do. I at least feel better knowing that I'm doing *something* rather then just coasting until my RE appointment. lol Hopefully my choices are right.

 

[Storked]

Definitely will do. I at least feel better knowing that I'm doing *something* rather then just coasting until my RE appointment. lol Hopefully my choices are right.

I hope they are too because then you can better help your family

 

[dodgercpkl]

I guess I should update. My RE appointment was both good and bad. Good in that they will do serial u/s's when I get pregnant next as well as monitor me closely (betas etc). Also good in that they automatically gave me a prescription for progesterone supplements and are having me take baby aspirin.

Bad in that the RE really knew nothing about MTHFR and based everything on my homocysteine level which is normal by typical lab standards (but not by current research standards). Because of this he refuses to even consider giving me Lovenox/Herapin injections.

So the long and the short of it is that I'm going to be looking into switching to the other RE in the office because she's apparently more open minded about the blood thinners. I didn't find out much info of course, but I'm getting more testing and I'm hopeful that my Endocrinologist will have some more information for me at my meeting with her in about a week.

 

[Virginia]

Is it okay if I join you ladies? I'm not TTC right now, because I'm 21 weeks pregnant with my daughter Eden Marie, who was diagnosed with anencephaly, a rare fatal neural tube defect, but I recently learned that I'm compound heterozygous for the MTHFR gene mutation (I have 1 of each copy), and that is probably what caused Eden's anencephaly. I definitely want to learn as much as possible about the MTHFR gene mutation. We are carrying Eden to term (I'm due Dec 2nd - the link to the blog I've started about her life is in my siggy), but there's a possibility of me going in pre-term labour for high fluid levels, and they wouldn't stop it if I did. We do plan on TTC again almost immediately after Eden's birth as long as I don't end up with a c-section. I have 1 healthy daughter, Brooklyn (a miracle), and I had 1 miscarriage before her, probably also because of this MTHFR gene mutation. I've been doing a TON of research about it all, and it baffles me how little seems to actually be known about it all. The "specialist" didn't really know anything about it and actually suggested 5mg of folic acid and a prescription drug called Methanx (which I researched and it turns out it's just the active forms of all three B vitamins plus a bunch of yummy artificial additives and fillers). I'm NOT going to be going the route he suggested, because I can buy all the active B vitamins OTC a LOT cheaper than the Methanx, and the folic acid thing is just crazy...the more I research it, the more I find links to cancer, asthma in children, etc...not good at all...yet all you hear on TV or from doctors is how folic acid is our saving grace...since when is pushing the synthetic version of something that your body has to to all kinds of crazy things to to get it to work for it normal or desirable!? Just give me the kind my body can use and we'll call it good! So recently I've started taking methylfolate, and methyl-B12, (and probiotics, calcium/magnesium, vitamin D3, flaxseed oil, and the remainder of the placenta capsules I made from my dd's placenta), and I threw out my prenatal vitamins that are loaded with synthetic vitamins...the only B vitamin I've yet to research is the B-6. Should I also be taking the active form of that as well? And why?

What I've read so far from multiple sources is to take the active forms of b vitamins. Folic Acid just doesn't work for me, and honestly the more I read about it, the more I feel like it doesn't seem to work for anyone.

On my own, I've decided to switch up all of my vitamins to the active forms, so I'm using Emerald Labs Prenatals (all active vitamins including L-5 Methyl Tetrahydrofolate instead of Folid Acid and Methylcobalamin instead of 'normal' b12). Instead of my body having to process the vitamins to turn them into useful things for my body (which it doesn't do well), these forms ARE the useful things and don't need to be processed into something else.

Obviously, we'll have to see how well I did in changing when I get to the RE's appointment in 11 days. lol

That is EXACTLY how I feel about folic acid since researching it!

 

[dodgercpkl]

You are more then welcome Virginia!! It's good to have another researcher on the thread with me. We can consolidate our information!

I'd make sure it's the active form as well. I don't think I've read as much about that as the other 2, but honestly I threw out all my old vitamins like you did and now am taking ONLY active forms for all vitamins. I figure why not, because if that's what my body (or any body) can actually use, why take the chance that I might have a poor time processing the synthetic? Not to mention that while the easiest information is about folic acid and B12, all of the vitamins on the market these days (save for just a few that I'm assuming were easy enough to produce without creating a synthetic) are synthetic. I've read that normal vitamins reflect light only one direction, but the synthetics (though formulated identically) reflect light both left AND right which makes them handle differently in the body.

My RE knew less then yours. He only offered that I could go on high dose folic acid after I asked a question about it. Ugh. I'm hoping that my Endocrinologist will know more when I see her next week since she's the one that ordered the test in the first place and she had me on active b12 w/folate before I even had a clue about the differences in vitamins.

Have you read about the connection between gluten intolerance and MTHFR or the issues with getting rid of heavy metals like mercury etc?

I've been reading a bit of your blog, and I'm so so sorry for what you and your family is having to go through with Eden. It's so hard to know at times what God's plan is for things... I know I don't know what will happen with Eden, and it might be just as the doctors say, but if you don't mind, I'll tell you the story of what happened to my best friend - maybe it will give you a bit of strength. My best friend went through years of infertility ttc her first and that finally culminated in IVF. She got pregnant and was so thrilled. Until she got to a bit further along then you are and the drs told her that her son had major issues that would make it impossible for him to survive - if he even made it long enough to be born.

I don't remember what the name of the issue was anymore (it was a long time ago now), but basically his heart was forming both inside out and backwards. The issue that he had was so rare that he was the only known infant with his version of it, but all other children with similar issues had passed away before birth or before age 1 and there were no living people with it. They said that if by some miracle he survived past age one, he would never have a normal childhood, would never develop normally. They didn't believe that any child with this disease would ever make it past their 2nd birthday. I know it was as agonizing of a decision for her and her husband as this must have been for you. They decided to carry to term and see what happened.

Their son was born almost 9 years ago. In the first 2 years of his life, he had to have 2-3 major heart surgeries. She and her husband had to completely change everything in their lives because someone had to be home with the child 24/7. He had no immune system, so he couldn't go out in public and they had to take huge precautions for anyone coming into the house from outside. I'm pretty sure they went through the antiseptic by the gallons.

However, he's almost 9 years old. He's a happy healthy kid who loves to run and is smart as a whip! He proved the doctors wrong about him.

It sounds like whatever happens, you 2 have come to peace with it. I'll be adding my prayers to yours!

 

[dodgercpkl]

Ugh. I was just reading another post about anenscephali and realized that I probably should have looked it up before I said anything. >.< I'm so so sorry. *hugs*

 

[Virginia]

You are more then welcome Virginia!! It's good to have another researcher on the thread with me. We can consolidate our information!

I'd make sure it's the active form as well. I don't think I've read as much about that as the other 2, but honestly I threw out all my old vitamins like you did and now am taking ONLY active forms for all vitamins. I figure why not, because if that's what my body (or any body) can actually use, why take the chance that I might have a poor time processing the synthetic? Not to mention that while the easiest information is about folic acid and B12, all of the vitamins on the market these days (save for just a few that I'm assuming were easy enough to produce without creating a synthetic) are synthetic. I've read that normal vitamins reflect light only one direction, but the synthetics (though formulated identically) reflect light both left AND right which makes them handle differently in the body.

My RE knew less then yours. He only offered that I could go on high dose folic acid after I asked a question about it. Ugh. I'm hoping that my Endocrinologist will know more when I see her next week since she's the one that ordered the test in the first place and she had me on active b12 w/folate before I even had a clue about the differences in vitamins.

Have you read about the connection between gluten intolerance and MTHFR or the issues with getting rid of heavy metals like mercury etc?

I've been reading a bit of your blog, and I'm so so sorry for what you and your family is having to go through with Eden. It's so hard to know at times what God's plan is for things... I know I don't know what will happen with Eden, and it might be just as the doctors say, but if you don't mind, I'll tell you the story of what happened to my best friend - maybe it will give you a bit of strength. My best friend went through years of infertility ttc her first and that finally culminated in IVF. She got pregnant and was so thrilled. Until she got to a bit further along then you are and the drs told her that her son had major issues that would make it impossible for him to survive - if he even made it long enough to be born.

I don't remember what the name of the issue was anymore (it was a long time ago now), but basically his heart was forming both inside out and backwards. The issue that he had was so rare that he was the only known infant with his version of it, but all other children with similar issues had passed away before birth or before age 1 and there were no living people with it. They said that if by some miracle he survived past age one, he would never have a normal childhood, would never develop normally. They didn't believe that any child with this disease would ever make it past their 2nd birthday. I know it was as agonizing of a decision for her and her husband as this must have been for you. They decided to carry to term and see what happened.

Their son was born almost 9 years ago. In the first 2 years of his life, he had to have 2-3 major heart surgeries. She and her husband had to completely change everything in their lives because someone had to be home with the child 24/7. He had no immune system, so he couldn't go out in public and they had to take huge precautions for anyone coming into the house from outside. I'm pretty sure they went through the antiseptic by the gallons.

However, he's almost 9 years old. He's a happy healthy kid who loves to run and is smart as a whip! He proved the doctors wrong about him.

It sounds like whatever happens, you 2 have come to peace with it. I'll be adding my prayers to yours!

I have heard about the gluten intolerance thing, and I plan on asking my doctor about a gluten sensitivity test when I go to my appointment on Thursday. I also have heard about the mercury thing, and it makes me so relieved that we decided to not vaccinate our children. I think this mutation and adding mercury among other chemicals to the mix in the extent of what the US recommends for its vaccine schedule could certainly lead to disaster. I received 15 vaccines in my entire life, but they recommend like 50 now before the kids are two years old. I can't imagine the damage my daughter might have gotten if she had all these weird chemicals, preservatives, etc. injected into her. I'm glad I didn't take the synthetic vitamins they wanted me to give her as well! I'm sure I passed the MTHFR gene on to her, and I'm pretty certain my husband also has it (though he doesn't have insurance, so we have no way of actually checking). That's great about your friend's son. I wish there was some kind of uncertainty about Eden's condition, but unfortunately, we know that she'll live a short life. If we are very very lucky, we might get a week or two with her, but more likely a few minutes or hours.

 

[dodgercpkl]

Yeah I'm planning to ask mine about either gluten sensitivity or a test for celiac's disease. I'm definitely doing a metals test to see what my levels of things are in my body and it will also test nutrient level - in fact I'm in the middle of the lovely 24 hour urine test for it now! I'm actually looking forward to seeing what the results are. Silly huh? lol

I'm so glad to hear that you didn't vaccinate your kids! Have you had to deal with any issues from insurance or schools? I know my SIL has had issues with both of those entities requiring certain vaccinations. >.< But then I've also read something that sounded like kids with MTHFR can get permission to skip the vaccines but I've not done any research to see if there is a legal thing behind that or just wishful thinking.

I know for a fact that when I do have a child, I'll be passing on a copy of the C677T mutation since I am homo for that. We don't know yet about my husband. Are you going to have your hubby tested? We are planning to have mine tested, but we just haven't decided how we want to go about that yet. We might just order the test through Dr Ben even though it's not cheap. We both have insurance, but Kaiser doesn't seem all that up on MTHFR mutations and the problems associated with it.

I was so sad when I finally looked up the condition that Eden has. *hugs* You are a very brave and strong lady (and your husband too - male version ofc).

 

[dodgercpkl]

*bump*

 

[_Anya_]

I have it, too. This site is useful: https://mthfrliving.com/