happi duck Posted January 20, 2023 Share Posted January 20, 2023 My sibling and their child have the mutation (?). I'm thinking I should be tested. The geneticist I work with won't do this test and says it's pointless. I'm thinking of doing a "send in a cheek swab" test. If I have it then what? My sib and their child have a doctor who insists on an expensive, specific to one pharmacy prescription so I couldn't just get what they take. I found this place but I'm always afraid of being scammed. https://www.mthfrdoctors.com/product/mthfr-test-cheek-swab-saliva/ Anyone btdt? Best OTC supplement? I want to take care of myself but am super overwhelmed! 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2023 Share Posted January 20, 2023 (edited) I have info, but I'm on my phone. It's not as simple as you have it or not. Any dr saying it is doesn't understand it. Bottom line ... Thorne mthf. One of the few sups I will not compromise on. The trick is knowing how much. It comes in 1mg, 5mg 15mg. We've done the rx, name currently escapes me, Never. Again. Thorne is better. I can give more info later. Edited January 20, 2023 by gardenmom5 1 Quote Link to comment Share on other sites More sharing options...
SKL Posted January 20, 2023 Share Posted January 20, 2023 I am ignorant about prescriptions for this. It is basically a reduced ability to metabolize folic acid. My kids have it on both sides, and I have it on one side. The way I address it is to buy vitamins that don't include folic acid, but rather natural folate. (Unfortunately they put folic acid in many foods in the US, so I'm sure we still eat some, but hopefully not too much.) How we tested for it: we had done DNA kits for other reasons. We downloaded the DNA data from 23andme and uploaded to promethease.com, which provides a ton of info about genetic predispositions (at the time for only $5). Really fascinating. There are also free services that will tell you if you have MTHFR if you already have DNA data somewhere. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2023 Share Posted January 20, 2023 Ok, quick background MTHF mutation ranges from heterozygous (one mutated gene) to compound homozygous. (3 mutated genes). MTHF mutations are either 977, or 1298. Each has different effects. I'm homozygous for 1298, as is my daughter. Two sons and dh are heterozygous. Other kids haven't been tested. you can have one of one (heterozygous), two of one (homozygous), one of both (compound heterozygous), or two of one and one of the other (compound homozygous.). each affects how your body can absorb and use folate. Compound mutations are worse than being homozygous of one. Ability to use real folate can be reduced as much as 90%. diet plays a big part in expression, each gene expresses in a different way, and I can see typical expressions of our mutation going back to my grandmother and a number of her sisters. TIAs are common with ours (as well as a few other things I see in multiple generations), and the thought of them scare me. fiy: folic acid is 100% synthetic (folinic acid is a natural form of folate - many drs don't know the difference.), and is one of the worst things someone with a MTHF mutation can ingest. Folic acid is attractive to folate receptors BUT the folate receptor can't do anything with it, so it sits there blocking real folate from being absorbed. Do your best to avoid folic acid in your diet - which is hard when so many foods are "fortified" with the stuff. Lots of folate rich foods. I've done deplin (the rx - I reverted on it after switching from Thorne), NDs almost unanimously recommend Thorne MTHF. (there are different molecular forms of MTHF on the market - and form matters!) Start LOW, and go up slowly. I've done this with multiple NDs - they will build slowly, and keep going until you start feeling icky as opposed to better. It helps nail down that sweet spot where you feel your best. going up too fast - you might feel good for a bit, but then you'll go over the hump and crash. Taking it will start your body doing detox it hasn't been able to adequately accomplish, so go slow. I will never do Deplin again. (and not because it's expensive, but because I feel better on Thorne.) I did a compounding pharmacy of MTHF for awhile - but ONLY because they sourced from the same place as Thorne. 1 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2023 Share Posted January 20, 2023 I did the 23&Me Health (does more SNPS than other dna tests) and my ND ran it though two different filters that are only available to the medical community via subscription. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 20, 2023 Author Share Posted January 20, 2023 (edited) @gardenmom5 thanks for sharing! I think this is more than the doctor told my sib and their adult kid! Maybe 23 and me might be better than the place I linked in the op? Sounds like more information. If I don't do a dna test soon, do you know if taking the Thorne mthfr would be pointless if I end up not having it? Thanks again! Eta: I really appreciate the help. I'm having trouble researching and a lot of "don't bother" is coming up. Edited January 20, 2023 by happi duck 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2023 Share Posted January 20, 2023 1 hour ago, happi duck said: @gardenmom5 thanks for sharing! I think this is more than the doctor told my sib and their adult kid! Maybe 23 and me might be better than the place I linked in the op? Sounds like more information. If I don't do a dna test soon, do you know if taking the Thorne mthfr would be pointless if I end up not having it? Thanks again! Eta: I really appreciate the help. I'm having trouble researching and a lot of "don't bother" is coming up. All it is is a form of folate. You're safe taking it without testing. It won't hurt you. But do start slow, just in case. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2023 Share Posted January 20, 2023 50% of the population is estimated to have a mutation. (According to the human genome project.) Then it breaks down from there. If you don't have a mthf mutation, it doesn't matter. Most have one mutation and if they eat well, they'll probably be fine. For those with two (or three) mutations, it's a bigger deal, but we're a smaller group. 1 Quote Link to comment Share on other sites More sharing options...
SKL Posted January 20, 2023 Share Posted January 20, 2023 3 hours ago, happi duck said: @gardenmom5 thanks for sharing! I think this is more than the doctor told my sib and their adult kid! Maybe 23 and me might be better than the place I linked in the op? Sounds like more information. If I don't do a dna test soon, do you know if taking the Thorne mthfr would be pointless if I end up not having it? Thanks again! Eta: I really appreciate the help. I'm having trouble researching and a lot of "don't bother" is coming up. Last I checked, 23andme "health" (you pay extra for the health stuff on top of the standard ancestry / DNA match stuff) was way more expensive than others, and it gives way less info than promethease.com. There's another one that is free (if you have a DNA data download) - geneticgenie.org - that gives MTHFR and related info and a bunch of others, but not as much as promethease. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 20, 2023 Author Share Posted January 20, 2023 @gardenmom5 @SKL Thanks so much for helping me! 1 Quote Link to comment Share on other sites More sharing options...
iamonlyone Posted January 20, 2023 Share Posted January 20, 2023 Two of our (adult) children have the double mutation. We try to avoid eating folic acid. (If you choose whole wheat bread and go organic with things like cereals and white flour, you can avoid the added folic acid.) Also, Aldi and Trader Joe's have some foods from Europe that don't have added folic acid. We worked with a geneticist that pointed us to Vitaprime for a multivitamin. You want the B vitamins to be methylated — which means they are broken down to a form that can be metabolized. I also suggest that those kids avoid nitrous oxide (laughing gas) and fluoroquinolones, if possible. (Fluoroquinolones kind of scare me anyway!) I have also told our daughter that traditional prenatal vitamins may not be good for her if and when she starts a family. (Prenatals with methylated folate may be better.) You can research all of those aspects by typing MTHFR and the chemical, antibiotic, or "pregnancy, folic acid." Everything is in early stages of research, so we may or may not be overly cautious. 1 1 Quote Link to comment Share on other sites More sharing options...
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