https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Fri, 22 May 2026 23:30:25 +0000 https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1595929 Sun, 27 Apr 2014 17:02:08 +0000 magnolia 1595929@https://boards.hellobee.com/ <p>@Mrs.Someone: ah! That's great to know. I just ordered some. Been trying to eat lots of dark leafy greens since the beginning of my pregnancy to get natural folate. Thanks again :happy: </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594475 Sat, 26 Apr 2014 10:05:38 +0000 Mrs.Someone 1594475@https://boards.hellobee.com/ <p>@magnolia: My naturopath said it was OK to take the vitamins all at once, so that should make it easier. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594464 Sat, 26 Apr 2014 09:50:52 +0000 magnolia 1594464@https://boards.hellobee.com/ <p>@Mrs.Someone: so sorry about your losses. Thank you so much for the info and reassurance.<br /> I am going to try new chapter vitamin. I used it in one of my previous pregnancies, I don't love having to take it 3x a day but it sounds like its worth it.<br /> The OB I usually see has been out on vacation almost since the beginning of my pregnancy, so I have been seeing another provider in his practice. I go back in less than two weeks so I guess I will take the lovenox until then. I am waiting for the MFM office to call me for my appointment.... Hopefully I get some answers soon! Thanks again. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594244 Sat, 26 Apr 2014 00:45:44 +0000 raintreebee 1594244@https://boards.hellobee.com/ <p>@Mrs.Someone: I agree that lovenox would be a nonstandard treatment (and very aggressive) for one, even two, mthfr mutations. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594231 Sat, 26 Apr 2014 00:16:16 +0000 Mrs.Someone 1594231@https://boards.hellobee.com/ <p>@magnolia: I take the New Chapter Prenatal. There are very few that have just Folate, but its not as big of a deal if you just have the one mutation. I would think that you're on the Lovenox because of the other 2 conditions, you definitely shouldn't be on it just for 1 MTHFR mutation (something like 30% of the population has one). Its used for various clotting disorders, which hemochromotosis sounds like. I was put on it a few days after ovulation (I also had 2 m/cs), because I also had trouble concieving. </p> <p>Your OB doesn't sound very helpful, especially since she didn't tell you about the injection! Do you see the MFM soon? </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594196 Fri, 25 Apr 2014 23:01:57 +0000 magnolia 1594196@https://boards.hellobee.com/ <p>@FaithFertility: @T.H.O.U.: thanks so much for your input and the reassurances. I am frustrated because nothing was explained to me other than "we are sending you to a specialist". My test results say c.665C&gt; T ( A222v) heterozygote. Not that I know what that means. :bummed: </p> <p>@Mrs.Someone: thank you so much for sharing. What prenatal do you take? Mine only has folic acid right now. Also curious how far along/how long you were put on Lovenox? I am also confused about the Rx and my Ob didn't even tell me I was going to have to be injected. Grr.</p> <p>Pretty sure these aren't autoimmune issues, but I also was positive for biotinidase deficiency and hemochromotosis. I thought this test was mostly for thrombophilia which I know I am negative for. I know my aunt has hemochromotosis and 3 kids so I'm not as worried about that. I'm also Rh- but have gotten rhogam with every loss so don't think that should be an issue?</p> <p>Thanks again ladies. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594058 Fri, 25 Apr 2014 20:59:38 +0000 Mrs.Someone 1594058@https://boards.hellobee.com/ <p>@magnolia: I'm a bit surprised that you we're prescribed Lovenox for MTHFR. I was only put on it after finding several autoimmune issues (in addition to 2 MTHFR mutations). Hopefully your MFM will be able to provide more insite for you! Also, MTHFR.net is a great resource. In the meantime, make sure your prenatal includes Folate, not Folic Acid. Best wishes on your pregnancy! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594048 Fri, 25 Apr 2014 20:49:13 +0000 FaithFertility 1594048@https://boards.hellobee.com/ <p>@T.H.O.U.: I agree with you, I freaked when I find out, but learned 1 is common, I just the baby aspirin and a pre natal that helps to absorb folic acid better, noting major!<br /> ! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1594003 Fri, 25 Apr 2014 20:23:43 +0000 T.H.O.U. 1594003@https://boards.hellobee.com/ <p>@magnolia: if it's just one mutation that may not be a big deal. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1593964 Fri, 25 Apr 2014 20:06:31 +0000 FaithFertility 1593964@https://boards.hellobee.com/ <p>@magnolia: DO you have 1 gene mutation or two? </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1593430 Fri, 25 Apr 2014 14:39:03 +0000 magnolia 1593430@https://boards.hellobee.com/ <p>Bumping this up as I just found out I have a MTHFR mutation. my ob prescribed lovenox and referred me to a maternal fetal medicine specialist. Just looking for more info as she explained very little to me about what this means. I am 8 weeks and had 2 m/c in the past, which were at least in part due to a septate uterine wall which has since been removed. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1085698 Fri, 13 Sep 2013 14:15:02 +0000 Thenetexan 1085698@https://boards.hellobee.com/ <p>I forgot to say that my OB told me to take the baby aspirin after the first loss, as it can help but won't hurt. I am kind of a freak about not wanting to take anything, so I did not take the baby aspirin. I do take it now and wish I had listened after the first loss. I also started seeing an acupuncturist. A friend who had four losses after conceiving her first thought acupuncture was the game changer that led to a healthy pregnancy and second child. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1085680 Fri, 13 Sep 2013 14:09:41 +0000 Thenetexan 1085680@https://boards.hellobee.com/ <p>@Mrs. Jump Rope: My first pregnancy was complication free and resulted a healthy, now 21 month old. I had two losses this year and my OB did initial progesterone check as soon as I got my BFP after the firs miscarriage and then did more blood work after the second. If he had not been willing to test, I would have gone elsewhere. Insurance covered it. In my mind, if there is any chance we can find out why and prevent this from happening again, that's what we should do. @spaniellove: my testing indicate the most common MTHFR which is a single mutation of the one that ends in 98c. My OB thinks that is not a problem... Not sure what I am going to do about that. I do already take a high dose of folic acid. I need to make my annual appointment and ask him to test for the folic acid absorption. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1085632 Fri, 13 Sep 2013 13:53:41 +0000 raintreebee 1085632@https://boards.hellobee.com/ <p>@spaniellove: How did they test your clotting time? Every doctor I talk to (which is a lot at this point) seems to think baby aspirin can't hurt. </p> <p>Part of what has been going on, although we just got a new sh#$%y blood test back testing a different protein (AFP), which confirms we are at very high risk for placental problems. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1085556 Fri, 13 Sep 2013 13:23:05 +0000 spaniellove 1085556@https://boards.hellobee.com/ <p>@raintreebee: My homocysteine was slightly low (probably because I've been taking so much folic acid) and my clotting time was elevated, so I'm not sure what to do about baby aspirin. Is the placental malfunction a new thing or part of what's been going on? </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1085313 Fri, 13 Sep 2013 12:01:41 +0000 raintreebee 1085313@https://boards.hellobee.com/ <p>@spaniellove. I am compound heterozygous MTHFR. Although my homocystein levels are normal (you should have these tested, btw), I am on baby aspirin and extra folic acid. I also take a special kind of folic acid in my prenatal called quatrefolic acid, that is easier for MTHFRers (lol) to process. </p> <p>My RE, my OB, my MFM, and my hematologist both thought there was evidence either way on MTHFR causing problems but thought it was worth taking the baby aspirin and extra folic acid. Not to scare anyone, but I do wonder if my problems in this pregnancy are related to the MTHFR. I had a subchorionic hematoma and now what appears to be placental malfunction. I'll have a better idea, I think, once the placenta can be examined for clots at birth. And it really is just a theory of mine. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083872 Thu, 12 Sep 2013 20:11:09 +0000 LovelyPlum 1083872@https://boards.hellobee.com/ <p>@spaniellove: I'm pretty sure there are more bees with MTHFR mutations, but I'm blanking on who. Hoping they see this thread. I'm really hopeful that identifying this issue brings you much closer to a sticky baby!</p> <p>@Mrs. Jump Rope: I also had testing after our second loss, even though the first one was so early. They ran a slew of blood tests, and I had an HSG. I agree, I would push for it, if you're comfortable. Most of the blood work took no time, and I actually got pregnant again on my HSG cycle.</p> <p>Hugs to all. RPL is no joke. Sending love and positive vibes for sticky babies to everyone very soon! :heart: </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083849 Thu, 12 Sep 2013 20:01:28 +0000 Mrs.Someone 1083849@https://boards.hellobee.com/ <p>@spaniellove: @justdarling: My autoimmune testing was billed at around $2000, but luckily insurance covered almost all of it and my copay was only around $30. Every insurance is different though! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083734 Thu, 12 Sep 2013 19:17:20 +0000 justdarling 1083734@https://boards.hellobee.com/ <p>@spaniellove: my RE is in the Bay Area near San Francisco. He is known for the immune stuff. A lot of RE's don't believe in it, but this guy does. He has really good success rates, which I like. The only thing that i don't like is that the blood work for the autoimmune testing is not covered by insurance and it is expensive. I've had to do it 2x now. He does a baseline and then tests again after 2 of the intralipids. My numbers have gone down, just not enough so I need more intralipids. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083723 Thu, 12 Sep 2013 19:12:37 +0000 spaniellove 1083723@https://boards.hellobee.com/ <p>@Mrs. Jump Rope: If this jogs your memory at all, the testing we had done basically had two parts - the karyotyping (which had a very very small chance of anything being wrong) and the clotting panel. They might be assuming that because you had a successful pregnancy (so probably no clotting issues) and C seems fine (so probably no karyotype issues) that's not the problem. I do hope you have a successful cycle next month and you don't have to worry about any of this! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083694 Thu, 12 Sep 2013 19:03:01 +0000 Mrs. Jump Rope 1083694@https://boards.hellobee.com/ <p>@spaniellove: I'm so sorry for your losses ((hugs))</p> <p>Our insurance covers diagnostic testing for infertility. RPL is so new to me. I'm not sure if RPL testing is covered, and if it isn't, what the fees might be. My RE &amp; OB are so positive that ill have a successful cycle next month that testing isn't on their radar -- and I've asked both parties more than once. </p> <p>I had a lot of testing done before we started our journey at the REs office &amp; they ruled our genetic testing, so I'm curious if I'm forgetting some blood test I had done that is making them so positive I don't need RPL testing.</p> <p>Ill have to give them a call! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083676 Thu, 12 Sep 2013 18:56:38 +0000 spaniellove 1083676@https://boards.hellobee.com/ <p>@justdarling: Now I'm curious which RE you go to that proactively did the immune testing and actually had you do the intralipids... </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083666 Thu, 12 Sep 2013 18:52:49 +0000 justdarling 1083666@https://boards.hellobee.com/ <p>I am diagnosed MTHFR heterozygous A mutation. So I only have one mutation. I also had the autoimmune testing done and was found to have issues there. Right now I am on Folgard (prescription folic acid), a prescription pre natal with tons of folic acid and baby aspirin daily. I had an egg retrieval last month for our first IVF and will do a FET next month. After the egg transfer, I will have to do daily Lovenox shots until at least 11 weeks of pregnancy. I have also done 2 intralipid transfusions so far and will need to do 2 more around the time of the transfer. The intralipids are for the immunology part of this. I will have the autoimmune blood tests done again after my last intralipid. One last thing, I am on an anti-inflammatory diet, similar to @Mrs.Someone, which is gluten and dairy free. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083662 Thu, 12 Sep 2013 18:51:39 +0000 spaniellove 1083662@https://boards.hellobee.com/ <p>@Mrs. Jump Rope: In our case it was after our 2nd loss. There was also a failed IVF in between, but that wasn't really a factor. It's just so hard to get to each BFP that if there's anything we can do to prevent a m/c we'd do it. Is the testing covered by your insurance? Getting the karyotyping and other bloodwork done can be pricey but if it's covered by insurance at all it's really worth not waiting. My clinic coded my dx differently just for that testing so the tests would be covered. </p> <p>@Mrs.Someone: Don't worry at all; you know I love learning new things! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083627 Thu, 12 Sep 2013 18:36:55 +0000 Mrs.Someone 1083627@https://boards.hellobee.com/ <p>@Mrs. Jump Rope: I know its hard when everyone is telling you things should be fine. And the odds are very in your favor for having no problem the next time. But each loss is so heart breaking, some blood tests are worth it in my book. There is only a 4% chance of 2 in a row. I told my ND that I don't care what it costs, I wanted testing in hopes of preventing a third. This link was shared with me and it has helped a lot:<br /> <a href="http://www.acfs2000.com/basic_services/repeated-pregnancy-loss-habitual-abortion.html" rel="nofollow">http://www.acfs2000.com/basic_services/repeated-pregnancy-loss-habitual-abortion.html</a></p> <p>If I were you, I would either try and find a OB or ND that can help, or go a little farther away and look for a different RE. Otherwise, you can insist on them testing you. Tell them how hard the losses were for you, and that you're willing to pay for blood tests if insurance doesn't cover them (mine did, even though it sounded like they wouldn't).</p> <p>I'm also on an "anti-inflammatory" diet, which means no gluten, plus some other stuff.</p> <p>Edit: Sorry Spaniel, didn't mean to hijack the thread... I should've posted this to her wall. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083598 Thu, 12 Sep 2013 18:27:40 +0000 Mrs. Jump Rope 1083598@https://boards.hellobee.com/ <p>@Mrs.Someone: they are the only RE in the area, so my options are pretty limited. I talked to my OB about it as well and she agreed, no testing necessary. Both my OB and RE are in agreement that since I had a successful pregnancy using a specific dose of clomid, there's no reason to suspect it won't happen again.</p> <p>I'm trying to be hopeful but don't want to waste time or be even more upset. I'm new to RPL and am tryin to learn more about it. </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083591 Thu, 12 Sep 2013 18:24:19 +0000 Mrs.Someone 1083591@https://boards.hellobee.com/ <p>@spaniellove: So those are my 2 main issues. I have 2 MTHFR mutations (definitely find this out, many labs are connected to Microsoft Health Vault, which you can sign up for for free). I started on 1mg/day and upped it once a week until I was at 5mg. It is pricey, but necessary unfortunately :P Mthfr.net is a great resource too. For the autoimmune issue I take baby aspirin, and selenium for the Hashi's/thyroid. Let me know if you want my ND's contact info, she does phone consultations (though its out of pocket).</p> <p>@Mrs. Jump Rope: Please find someone that is willing to do some testing. Preventing more losses is worth it! I had some testing after the first loss, and more after the 2nd (plus a long time to get the BFPs). </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083575 Thu, 12 Sep 2013 18:18:05 +0000 Mrs. Jump Rope 1083575@https://boards.hellobee.com/ <p>@spaniellove: may I ask, what prompted the RPL testing?</p> <p>I've had one full term pregnancy, and two back to back losses. My REs office (who helped us conceive chloe) isn't suggesting further testing unless I have a third loss.</p> <p>Should I push for testing? We have a medicated and monitored cycle scheduled for October. Will I be wasting my time and setting myself up for heartache? </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083570 Thu, 12 Sep 2013 18:15:23 +0000 spaniellove 1083570@https://boards.hellobee.com/ <p>@Mrs.Someone: He didn't tell me of course, although I could request my records. Do you take the 5mg? Why is it so expensive?! I ordered a 1mg earlier this week and it should be here tomorrow, which will replace the 5mg/day I've been taking of regular folic acid. The dr who ordered my testing (whom I'm not fond of anymore; he also tried to convince me I absolutely had to do IVF again) refused to do autoimmune. Even though the head RE suspects autoimmune issues and wanted to put me on meds for it! </p> https://boards.hellobee.com/topic/what-do-you-do-for-a-mthfr-mutation#post-1083541 Thu, 12 Sep 2013 18:07:08 +0000 Mrs.Someone 1083541@https://boards.hellobee.com/ <p>It is most certainly a thing to worry about (though I was told the same by an RE). </p> <p>I take this daily:<br /> <a href="http://www.thorne.com/Products/Vitamins/Individual_Vitamins/prd~B132.jsp;jsessionid=Gv4cSyHL1zLF2YQdfSfzpzR8yvr83KbkQmCCqqQ26Ss9Mwh71ZhL" rel="nofollow">http://www.thorne.com/Products/Vitamins/Individual_Vitamins/prd~B132.jsp;jsessionid=Gv4cSyHL1zLF2YQdfSfzpzR8yvr83KbkQmCCqqQ26Ss9Mwh71ZhL</a>!863484655</p> <p>I had to ramp up slowly on the 5-MTHF (active folic acid), over 4 weeks. Do you know which mutation(s) you have? </p> <p>And have you been checked for the autoimmune stuff? I think you mentioned being hypothyroid? Something like 90% of it is Hashimoto's. Want to join me in the GF club? ;) </p>