thessa516 Posted January 13, 2015 Share Posted January 13, 2015 I found out yesterday that I have the MTHFR gene (specifically C677T). If I'm reading the test results correctly, I have it both from my Mom and Dad. My doctor kind of glossed over the result. I plan to ask him more about it at my follow-up in a month, but in the meantime, can anyone help me out with good links to more information. I've changed my B12 to a methylated version, and I'm getting strict with no store-bought, vitamin-fortified bread stuff in my diet, but other than that, what else should I know? Also, I see that I have an elevated risk for post-menopausal breast cancer. My Mom is in remission from breast cancer. Anything I can do there to lower my risk? Same for cardio-vascular issues (my very healthy Dad recently had a heart stent put in). Thanks for any information! Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted January 13, 2015 Share Posted January 13, 2015 You could start with MTHFR.net. Research in this area is just getting started. I think your age plays a role in things, too. I had zero health problems for years before things started to catch up with me. My kids all take a sublingual B12 with active folate now. They all have to be at least heterozygous, so they need it. I take a couple of things based on my Dr.s recommendation, but that website and the ones linked from it have excellent protocols if you need more. I do have Hashimoto's, and my DD has Reynaud's. I'm lucky that I haven't had some of the other problems that some people who deal with this have had. I'm also thankful to have found out about it now rather than later. MTHFR is one of those things that can be so insidious and destructive, yet once you know what you're dealing with, it's manageable. Quote Link to comment Share on other sites More sharing options...
Spryte Posted January 13, 2015 Share Posted January 13, 2015 I will be listening in, as my info is scant - though I'll share the small bit I have. :) My doc Rx's a scrip for folate - I take that daily. If you want the name, I'll find it for you (I take a lot of meds, so I don't remember the exact names/doses of everything). Ostensibly, it is to help prevent cardio issues. I also have a problem detoxing certain meds, and I believe it's related to the MTHFR issue, though it could be that I'm remembering it that way only because we found out about both at the same time. Essentially, I cannot take certain meds that need to detox through a particular pathway in the liver - I lack the genes. Twice, I've almost died from meds. :( You might research that a bit, or I'll try to come back and post with more info on it. At the moment, I am still (slowly) recovering from flu, and it's been a slow slog (I have adrenal insufficiency complicating things), so I know this isn't as helpful as it could be. My brain is not quite firing on all cylinders. If you have specific questions, let me know and I'll try to answer more. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 13, 2015 Share Posted January 13, 2015 Sugarfoot already suggested you look at Dr. Ben Lynch. My doc called him the expert on the subject and there is a lot of info on his website, don't get overwhelmed. I am heterozygous for both but am managing with methylated B complex and various immune support supplements. Many allopathic doctors gloss over it because they evidently don't know that much about it but it sure helps to know your risk factors so you can counteract them. Spryte: the detoxing issue may well be related since the liver often deals with higher levels of homocysteine but if you take methylated B-12 complex, it should help. My HC levels came down nicely. I take Phosphorylated B-Complex - Metabolic Maintenance http://www.professionalsupplementcenter.com/MetabolicMaintenanceBComplex.htm?referrer=googleshopping&device=c&matchtype=&network=g&gclid=CLzM5r65kcMCFc1i7Aod3BQA0g Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted January 13, 2015 Share Posted January 13, 2015 If you're on Facebook there is a large group dedicated to this. Yes, I was just coming back to mention this! It's very active and full of good information. I think it may be related to the website, MTHFR.net. Quote Link to comment Share on other sites More sharing options...
wapiti Posted January 13, 2015 Share Posted January 13, 2015 . Quote Link to comment Share on other sites More sharing options...
Elisabet1 Posted January 13, 2015 Share Posted January 13, 2015 I take a baby aspirin a day too. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 13, 2015 Share Posted January 13, 2015 My ds is compound heterozygous. I find a lot of the info on MFTHR.net confusing. I need to devote some attention to all this sometime soon... Perhaps start here: http://mthfr.net/read-this-first/2012/01/25/ I agree that it can easily become overwhelming. I just ended up zeroing in on my particular issue and tuning out other stuff. Quote Link to comment Share on other sites More sharing options...
Katy Posted January 13, 2015 Share Posted January 13, 2015 I think it might depend on which variant you have, but I know b6 and folate should be methylated too, and the old treatment was a high dose of prescription artificial folic acid instead of methylated b vitamins. I was also told to take a baby aspirin every day, and if/when I get pregnant again I'll need to be on blood thinners. I find it all pretty confusing, and I'm generally good with medical stuff. Amy Yasko gets referenced a lot, and that is apparently because a lot of people with autism have mthfr snps. She recommends gluten free casein free diets, but I can't tell if that's neccessary for me or what. One thing I read said someone at MIT found that even though Yasko's protocol appeared to work, it wasn't working for the reason she theorized, which I found even more confusing. Then there are those who say you need to test your CBS and other snps too, because you should address that first or you'll feel worse instead of better. I don't have results of CBS test back yet, but I expect I do have some issue there (I've never felt good on higher protein or higher sulfur diets, and if I eat too much protein for a couple days in a row I reek like ammonia and start to feel like I have the flu all the time). Has anyone here methodically tested things like homocysteine and the other factors, changed your diet, and seen remarkable results? Quote Link to comment Share on other sites More sharing options...
momacacia Posted January 13, 2015 Share Posted January 13, 2015 Dr Ben Lynch is the guy for this, as well as Amy Lasko. I wouldn't expect the average doc to know much about it. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted January 13, 2015 Share Posted January 13, 2015 For preventing breast cancer: http://www.mayoclinic.org/healthy-living/womens-health/in-depth/breast-cancer-prevention/art-20044676 One of the key things about weight is that fat cells produce estrogen and most breast cancer is dependent on estrogen. So post-menopause, a woman who is overweight or obese is going to have more circulating estrogen than one who is not. It would be helpful to know which markers your mother's bc had. Was it estrogen+, pregesterone+, her2 +? If it was positive for the hormones, you may want to check with your dr. to see if it would be beneficial for you to take Tamoxifen as a preventative measure. It has side-effects, so you want to weigh the risk:benefit ratio carefully. You want to take into account all your risk factors, such as breast density, first period, first pregnancy, etc. to determine overall risk. Quote Link to comment Share on other sites More sharing options...
thessa516 Posted January 13, 2015 Author Share Posted January 13, 2015 For preventing breast cancer: http://www.mayoclinic.org/healthy-living/womens-health/in-depth/breast-cancer-prevention/art-20044676 One of the key things about weight is that fat cells produce estrogen and most breast cancer is dependent on estrogen. So post-menopause, a woman who is overweight or obese is going to have more circulating estrogen than one who is not. It would be helpful to know which markers your mother's bc had. Was it estrogen+, pregesterone+, her2 +? If it was positive for the hormones, you may want to check with your dr. to see if it would be beneficial for you to take Tamoxifen as a preventative measure. It has side-effects, so you want to weigh the risk:benefit ratio carefully. You want to take into account all your risk factors, such as breast density, first period, first pregnancy, etc. to determine overall risk. Thanks Laurie. My Mom is estrogen+, she's obese, and I'm about 25 pounds overweight. My doctor is helping me lose weight to keep my cholesterol in check without resorting to statins. I'm completely forgot about the fat cells producing estrogen, even though I know I heard that recently. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 13, 2015 Share Posted January 13, 2015 dr lynch is good - I've heard him speak in person. mthf.net is a good source of info. though I noticed he is also pushing his own supplements. (um, no.) there is another dr out there who is also a very good source of research information, but I can't remember her name. I'm homozygous for 1298. (experts theroize 16% of the population is homozygous for 1298 or 677.) THORNE is a very reputable brand of mthf, it comes in 1mg and 5mg capsules, for while you are getting to a dose that works for you. it. makes. a. difference. dudeling is hetero (one copy) and is on 15mg - makes a huge difference for him. mthf is required for the methylation cycle. (so are a few other things.) if it's not working, toxins can build up in the system, and not be cleared. I figure the reason I am NOT tolerating much mthf is the amount of toxins now being dumped into my system becasue the methylation cycle is starting to function. it sure explains health stuff I've dealt with over the years. My DO (knew enough to test, but I'm probably going to switch to a ND I know and trust for mthf.) Rx me 15 mg right off the bat. uh, no. lots and lots of bad side-effects. I'm now on 2mg, and only increase as I tolerate a higher dose. the good news is - just with that little bit, I'm more functional. I never realized before how much I had to force myself to do things. I thought I was just lazy and everyone functioned at that level. no, everyone does not function at that level. I'm also hopeful that with being on this and getting the doseage up I can avoid some of the health conditions (i.e. TIAs, knee replacements) that have run in my family. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 13, 2015 Share Posted January 13, 2015 Dr. Lynch is endorsing a certain brand of curcumin (turmeric) but when I click on the link he provides, it takes me to other places. He may have gotten into selling stuff since I looked at his website for help. It does not bother me too much since he really seems to know what he is talking about and - like gardenmom said - it makes a big difference in energy level and motivation. Quote Link to comment Share on other sites More sharing options...
thessa516 Posted January 13, 2015 Author Share Posted January 13, 2015 I never realized before how much I had to force myself to do things. I thought I was just lazy and everyone functioned at that level. no, everyone does not function at that level. YES! YES! YES! I am so sick of hearing that I'm tired and can't do anything because I have 5 kids, or that I'm getting up there in age. I know that the way I feel is not normal. Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted January 13, 2015 Share Posted January 13, 2015 dr lynch is good - I've heard him speak in person. mthf.net is a good source of info. though I noticed he is also pushing his own supplements. (um, no.) If he is knowledgeable enough to know about MTHFR and to know what one with that needs, I'm all for them creating a supplement that works. The doctor that I saw this summer about my health problems had no idea what MTHFR even was. It's frustrating to find someone that knows how to help. I'm glad Dr. Lynch is creating a line of supplements that have the potential to help. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 13, 2015 Share Posted January 13, 2015 If he is knowledgeable enough to know about MTHFR and to know what one with that needs, I'm all for them creating a supplement that works. The doctor that I saw this summer about my health problems had no idea what MTHFR even was. It's frustrating to find someone that knows how to help. I'm glad Dr. Lynch is creating a line of supplements that have the potential to help. I read ingredients. I pay attention to bioavailable forms. I have been taking kids to an ND for mthf for several years. I'll stick with THORNE. Quote Link to comment Share on other sites More sharing options...
MyLittleWonders Posted January 14, 2015 Share Posted January 14, 2015 When I found out that I was heterogenous for the C667T mutation as was my daughter, I just went ahead and switched the whole family over to Thorne (except dd; she has Down syndrome and takes a multi designed for kids with Ds). I need to get us all taking our vitamins regularly though. None of us are consistent at all. I have a feeling my dad was at least heterogenous; he had an aneurism that was caught in time. His mother had a stroke a few years before she died. I wouldn't be surprised if the mutation runs on both sides of the family, though I haven't tried to talk my mom into having a blood test and my dad passed many years ago. I only got myself tested after hearing from other parents of children with Ds and how their children were testing positive. My GP had no idea what it even was, but knows me well enough that he ordered the test. Dd's pediatrician was the same way, and even told me she was negative because he didn't read the results correctly. Does anyone know if there is a blood test/finger prick that will tell you if you are clotting too fast and need. A baby aspirin? I'm hesitant to take one but given family history, think it's probably something in my future. Quote Link to comment Share on other sites More sharing options...
SeaConquest Posted January 14, 2015 Share Posted January 14, 2015 My ds is compound heterozygous. I find a lot of the info on MFTHR.net confusing. I need to devote some attention to all this sometime soon... It is still very confusing to me as well. I get lost on MTHFR.net, and also don't like the pushing of supplements. It feels too Mercola-esque to me, who I regard as a quack. Thanks for the tip on the FB group. I just joined. As I recall, I am compound heterozygous as well. One bad 677 and one bad 1298, from each parent. My shrink is allopathic, but holistic. She was the one who ordered up the genetic testing because I have bipolar and pcos. She prescribed Enlyte, which I believe is methylated folate and b12, SAM-e, and fish oil. Quote Link to comment Share on other sites More sharing options...
Katy Posted January 14, 2015 Share Posted January 14, 2015 It is still very confusing to me as well. I get lost on MTHFR.net, and also don't like the pushing of supplements. It feels too Mercola-esque to me, who I regard as a quack. Thanks for the tip on the FB group. I just joined. As I recall, I am compound heterozygous as well. One bad 677 and one bad 1298, from each parent. My shrink is allopathic, but holistic. She was the one who ordered up the genetic testing because I have bipolar and pcos. She prescribed Enlyte, which I believe is methylated folate and b12, SAM-e, and fish oil. It is mercolaesque, isn't it? that's my problem with it too. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 14, 2015 Share Posted January 14, 2015 It is still very confusing to me as well. I get lost on MTHFR.net, and also don't like the pushing of supplements. It feels too Mercola-esque to me, who I regard as a quack. Thanks for the tip on the FB group. I just joined. As I recall, I am compound heterozygous as well. One bad 677 and one bad 1298, from each parent. My shrink is allopathic, but holistic. She was the one who ordered up the genetic testing because I have bipolar and pcos. She prescribed Enlyte, which I believe is methylated folate and b12, SAM-e, and fish oil. from everything I've read - that is the worst. eta: mercola doens't ring a bell (though other stuff that's probably similar does), but I am very uncomfortable about the way things are "pushed" on that site. last time I was there, I was trying to get information on side-effects, and how best to counter. I did not get as much helpful information as I would have hoped. (but lots of "buy this supplement from me".) to me, quality/bioavailability matters. and there is a HUGE difference among brands. Quote Link to comment Share on other sites More sharing options...
SeaConquest Posted January 14, 2015 Share Posted January 14, 2015 from everything I've read - that is the worst. That was pretty much my take on it as well. Not the best news, but explained a lot of my mood and hormone issues, which, I suppose, made me feel less crazy. Or, at least, less judgmental at myself for being fat and crazy. :hat: Quote Link to comment Share on other sites More sharing options...
thessa516 Posted January 14, 2015 Author Share Posted January 14, 2015 I appreciate each and every one of you for responding! Thanks so much! I have so much to read and research. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted January 14, 2015 Share Posted January 14, 2015 This is an excellent site on the issue. http://mthfr.net/ Should have read the rest of the posts first. Oh well. For us it means detoxing from all the medications our kids take can be an issue. Quote Link to comment Share on other sites More sharing options...
ksr5377 Posted January 18, 2015 Share Posted January 18, 2015 Following. Quote Link to comment Share on other sites More sharing options...
Elisabet1 Posted January 18, 2015 Share Posted January 18, 2015 My dh and I each carry a copy of mthfr. We each have a different one. Is that possibly where my daughters bipolar disorder can from? Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 18, 2015 Share Posted January 18, 2015 My dh and I each carry a copy of mthfr. We each have a different one. Is that possibly where my daughters bipolar disorder can from? Not sure if bipolar can result from this. More commonly immune system deficiencies and liver detox problems from what I learned. Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted January 18, 2015 Share Posted January 18, 2015 http://m.iherb.com/Thorne-Research-Basic-Nutrients-V-180-Veggie-Caps/18123 Thorne products have been life changing here. I swear by the multi in the link above. I read ingredients. I pay attention to bioavailable forms. I have been taking kids to an ND for mthf for several years. I'll stick with THORNE. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 18, 2015 Share Posted January 18, 2015 Elisabet1, on 17 Jan 2015 - 9:34 PM, said:Elisabet1, on 17 Jan 2015 - 9:34 PM, said:My dh and I each carry a copy of mthfr. We each have a different one. Is that possibly where my daughters bipolar disorder can from? yes - it can mimic bipolar. (it can also mimic schizophrenia). has she been tested? since you and your dh both carry different mutations, she could have inherited both. 677/1298 compound is the worst combination. HOWEVER, I wouldn't assume her symptoms are due to mthf unless that is how *her* tests are coming out, and she responds to treatment for mthf. even if mthf is only contributing - successfully treating it can make rx more effective. eta: in my own families experience, dudeling's aspergers has significantly reduced in traits as he's been treated. so have mine, and others. mthf can be a big deal and related to things people wouldn't have supposed. after reading about the connections with vascular and joint, (and seeing the very common vascular and joint issues in my female line), I'm hoping to avoid them with treatment. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 18, 2015 Share Posted January 18, 2015 Liz CA, on 17 Jan 2015 - 10:18 PM, said:Liz CA, on 17 Jan 2015 - 10:18 PM, said: Not sure if bipolar can result from this. More commonly immune system deficiencies and liver detox problems from what I learned. that is just barely scratching the surface of things they've found are affected by mthf. it also varies by which mutation you have. e.g. miscarriages are much more common with 677 (but can happen with 1298 too.) mental health issues (e.g. depression, aspergers, schizophrenia etc.) are more common with 1298. then there is the compound 677/1298. 677 has been studied more than 1298. vascular (heart, TIAs, etc.) have also been linked. the number of my maternal-line females (I should say - there aren't any males unless you talk cousins, or go back five generations) who've had TIAs is very concerning to me. and the one who didn't . . . had problems with her heart. all of those are vascular. (and the number who needed knee replacements. including my sister. when I was taking too much - one of the earlier side-effects was joint pain.) Quote Link to comment Share on other sites More sharing options...
Liz CA Posted January 18, 2015 Share Posted January 18, 2015 Yes, heart issues on my mother's side of the family. Her brother had a heart attack at 37. Quote Link to comment Share on other sites More sharing options...
Jennay Posted January 19, 2015 Share Posted January 19, 2015 from everything I've read - that is the worst. eta: mercola doens't ring a bell (though other stuff that's probably similar does), but I am very uncomfortable about the way things are "pushed" on that site. last time I was there, I was trying to get information on side-effects, and how best to counter. I did not get as much helpful information as I would have hoped. (but lots of "buy this supplement from me".) to me, quality/bioavailability matters. and there is a HUGE difference among brands. No, the worst would be compound homozygous which would be 2 mutated copies of the C and two of the A. Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted January 19, 2015 Share Posted January 19, 2015 Every single woman in my family who dies a natural death dies from stroke. I am homozygous for 1298 (rs1801131(C;C). I probably should do something about this. :huh: Quote Link to comment Share on other sites More sharing options...
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