Well there are a couple of old threads out there about the mthfr gene so I am hoping to start a new one for all of us who have various genes for blood clotting disorders. So please join me here so we can share our journeys together. ↓
A little about me: I am 32 and have two beautiful children plus an angelbaby up above. Cooper was born at 22 weeks after two weeks of placental bleeding which resulted in an infection that caused me to go into labor. After he was born they discovered two large blood clots on his placenta and had me tested for a whole array of things. It turns out I am compound hetero for the MTHFR mutation plus hetero for factor II prothrombin. My perinatologist wants me on daily Lovenox injections for my next pregnancy which I have heard completely suck but I think I can handle it. I've done more research on my own and have learned I should be on extra folic acid and B vitamins and am a little concerned that my peri did not mention this. I met with my midwife last week and asked to get a script for folgard, she said she thought that would be fine but wanted to look into it first but hasn't gotten back to me. I'm beginning to think I should switch to an OB but I love my midwife and there are OBs in her office too that she consults with if she needs too. My peri is an hour away so I can't see him exclusively but plan on using both. My midwife for OB visits and my peri for my lovenox consults and U/S's. We are not even ttcing yet, I'm still trying to get all my ducks in a row first..... ↑
Hey Jessica! Thanks for starting this new thread. It took me about 5 hours to read through the old one but I gotta tell you, I learned so much from it. I feel hopeful again that I'll be able to carry a baby to full term. Here is my story... I had my first miscarriage back in November of 2007. A blighted ovum was discovered at 7 weeks. I had a d&c and was told to try again after waiting two cycles. I was lucky to get pregnant again the first month back trying. That pregnancy resulted in a chemical pregnancy at 5 weeks. My doctor requested blood work and I got the results last week. I am compound heterozygous for the C677T and A1298C gene mutation MTHFR. I also tested positive for ANA (antinuclear antibodies) my titer level is 1:80 so just barely over what is considered "normal". My OB says that she believes that these mutations caused my m/c's. She has instructed me to take a baby aspirin every day the second I get a positive pregnancy test. For the MTHFR I'm taking 5mg of folic acid, 1000mcg of B12, 200 mg of B6, 1 Stuart brand pre-natal vitamin and 2400mg of Omega-3 fish oil. I'm seeing a rheumatologist at the end of the month to rule out any autoimmune disorders. I've already tested negative for lupus. I was so very thankful for that. Needless to say, my m/c's were heartbreaking and devastating to my Husband and I. I do feel a sense of optimism now that I know what is wrong with me because I feel that with the vitamin and aspirin regimen, we have a really good chance of having the family we want so badly. I'll be 37 years old in a month so I feel like the clock is running out a little bit. I would love to hear a story of a successful birth with someone that has both the MTHFR mutation and the ANA. What's your story Jessicab3? ↑
Yeah I've been taking otc about 4-5mg of folic acid plus I bought some B6 and B12 vitamens today. I'm also taking a multi-vit. Omegas and a baby aspirin (ba). Are you taking the ba now? I've read its good for implantation so should be taken while ttcing too. I've been thinking about seeing a hematologist or at least getting my homocystein levels checked before we officially ttc. Since I haven't been on the folic acid very long and we'd like to ttc soon like next month. ↑
Hi, I am hetero C677T, so not as much a problem but I've still been taking the aspirin, b6, b12, folic 5mg and omega 3 combo for some time. I also did lovenox this pregnancy just as a precaution. I personally don't put too much stock in the homocysteine levels thing because I've done so much reading that shows women all having "normal" levels yet keep miscarrying. Then when put on blood thinners they mysteriously go on to have babies. Coincidence? I don't think so, but doctors don't have enough hard evidence and studies to go on so most will stick with the "if your homocysteine levels are fine then so are you" line.....I'm just not convinced that most of the docs out there know all that much about this. Maybe a handful of specialists, but that's it. My primary care doc didn't even KNOW what MTHFR was!!!!! I was floored! Also, I noticed that many women who had babies early on and have this mutation have problems later on once they get in their 30s so I'm interested in knowing how much age plays into it..... ↑
I'm torn about the ba. I do take one most days but I've actually heard that it is not good for implantation so... but yeah, I'll continue one ba a day. My homocystiene levels were elevated which of course concerns me. I'll have all of my levels rechecked at the end of the month. I meant to tell you in my last post how sorry I am for your loss. Keep your chin up and don't give up hope - I'll do the same! You're so young still and have a good 10 years to have another baby. I live in Los Angeles and most women out here start having babies around my age 32-38 which is so different than the rest of the country. My rheumatology appointment is on April 30th so I'll let you know what the specialist tells me. Keep in touch and keep taking those vitamins!! ↑
Interesting on the age thing Stefkay. Maybe because women are waiting later in life to have children this is now coming into play. Sometimes I just want to shout out to the Universe "it's not my fault that I met my husband when I was 35!!! Now give me my babies!!!" Ugh. I'm interested in hearing what my rheumatologist will tell me about homocysteine levels. I'l pass all the info on to you girls. ↑
I've never heard age could be a factor, but it would help explain why I had my first two kids with no problems since I was 23 and 25 when they were conceived but 31 when I conceived Cooper. And the homocysteine thing is so confusing, all docs seem to have different theories on it. But I guess the whole genetic testing thing is pretty new so there are no long term studies out there to show the docs what is best. I have done some research on my own on Lovenox and most studies have shown that it does help reduce m/c and pregnancy loss so I'm not going to complain. And I've also looked into ba and all the studies I have found showed an increased pregnancy rate for women who were on it. But I don't think I should stop it either while I'm on the Lovenox although I was told to, as I've heard it actually crosses the placenta whereas the Lovenox doesn't. Urggh its so confusing. Stefkay how are you doing? You're getting close to the 3rd trimester right? Cloud9climber, l would be interested to hear what your rheumatologist says. All my autoimmune testing came back neg. but maybe he has more insight on the MTHFR too. I'm so sorry for your losses. But it is hopeful when we are armed with knowledge this time around. ↑
Hi Jessica! I'm doing good so far, just wish I'd spent more time enjoying my pregnancy. I'm in the 3rd tri now which is amazing to me (almost 29 weeks)....just kind of surreal I guess :) As for the baby aspirin, what cloudclimber mentioned about the implantation thing I did read that too in my research and still don't know what to make of it as it seemed unclear as to whether the study used baby aspirin or regular dose aspirin (which is a no-no--too much) but that may have just been what I read. Because of that I actually took my aspirin every day, but when ovulation time came I stopped taking it about a week or so before and started it again after my temp rose and ovulation was confirmed. I just didn't want to take any chances. I dont remember if I did that this pregnancy though because we really weren't trying that month. I was still kind of down about a chemical I had the month prior so I don't even think I was taking my regular vitamin regimine for most of the month. ↑
Well I tried to find more stuff on the interenet about ba and alot of fertility docs seem to be supporting it for implantation but there's not a whole lot of evidence that it helps. Its another one of those "it can't hurt" type of things since as far as I can tell no studies have shown it hinders anything. Its the full dose aspirin that can cause problems. So I guess I will keep taking it.... Glad you're doing good Stefkay its so nice to hear from those who are having positive results. And remember you have another 10 weeks to enjoy that little one inside you so cherish the time you have =) ↑
Thank you so much :) I need to be reminded that often! Seriously the nurse from my dr's office just called me back and said the same thing....it's like i need to be hit over the head to remember that it will be ok and I don't have much time left to just enjoy her moving around in my belly. ↑
Ladies can anyone advise me on which script I should be on for the folate and B vits. My midwife was a little confused because the Folgard I asked her about didn't have the right amounts (only 2.2mg folate) so now I have to call my peri and get a recommendation from him. But I'm a little concerned that he didn't recommend it to begin with. ~Thanks ↑
Jessica, I don't do the folgard because it doesn't have enough folic. My doctor prescribed straight folic acid pills that are 1mg each and on the bottle it says to take 5 daily (5mg). I just buy the B vitamins at the store, so overall I get more folic and b vitamins then I would get taking them in folgard (or a similar prescription blend). ↑
Hey Stefkay thanks for your response. I left a message for my peri so I'll see what he says. Hi Beebee, I have Factor II Prothrombin and I think that's similar to yours but not sure. What kind of treatment is your OB doing for you? ↑
Also, does anyone know how this gene effects stillborns? I lost my son at 40.2 weeks and have never miscarried before. I didn't even know I had this till I lost my son. I am 31, and I lost my first son 2 days after his due date. I'm just curious how this gene would have effected me. ↑
Hi TrevorsMommy, I'm so sorry for your loss..... The MTHFR gene is still pretty controversial but from what I understand, those of us who have the mutation tend to have higher homocysteine (hc) levels. Its possibly the hc levels that increase our chance of blood clots. One way to lower the hc levels is the high levels of folic acid (4-5mg), B6 (100-200), & B12 (500-1000mcg). Another way to control blood clotting factors is through baby aspirin or Lovenox injections. While pregnant we already have a higher tendency towards blood clots but combined with genetic predispositions it is even higher. The placenta which has a high volume of blood passing through some very small blood vessels is unfortunately where these blood clots usually occur. Even small blood clots can restrict blood flow to the baby. Larger blood clots can cause placental abruption. Were they able to tell you what may have happened to your son? If you had any kind of placental problems its possible the MTHFR gene could have played a part..... Once again I am so sorry for you loss. Like you I am hoping we can find some more successful stories out there. ↑
Thanks Jessica. =)
Yea, I didn't have high homocysteine levels. However, I also had the tests done almost 3 months after the fact. And, I was told after the autopsy that my placenta looked fine. But, homocysteine levels can be high in the amniotic fluid as well. So, maybe there was some clots that were missed. =( ↑
Morning Ladies! Well I had my appointment yesterday, it was pretty uneventful. My peri doesn't think I need to start the lovenox (which he'll prescribe instead of heparin) until I get a positive hpt, and they weren't inclined to do that right now since I'm only 9dpo. I'm supposed to call the nurse as soon as that happens, and they'll phone in my prescription. He'll start me off on 40mg of Lovenox a day (at least that was my understanding). He doesn't seem to think that being heterozygous FVL is that big of a deal. He didn't suggest that I even need to see a Hematologist, as he can monitor my dosage and check my blood work himself every couple weeks once I start the lovenox. I was given a presentation on how to give myself the shots by his nurse. My protime is fine right now, so other than while pg he doesn't think I need to worry about this except to be aware of the warning signs of clots and that it wouldn't hurt to take a regular aspirin a day (if I'm not ttc, but for the time being take the baby aspirin). He didn't have anything extra to tell me, that I hadn't already read in my on-line research. And that was pretty much the conclusion of my visit. I guess I didn't really expect a whole lot more, but then again..... I didn't know what to expect at all. Does this all sound about right, to you ladies that have been through this kind of thing? ↑
Hi beebee, that sounds pretty close to my experience. The 40mg is considered a prophylactic dose and is pretty common. Since I carry three different genes I will be on the therapeutic dose which is based on my weight. But I was also told the same thing about calling when I got my bfp and about not needing to see a hematologist. But he did offer to give me the referral if I wanted to. Let us know when you decide to test. I'm sending you some baby dust in the meantime. *+..+**+.+*BABY DUST!!**+.+*+..+*+.. ↑
Do any of you ladies see a "specialist" or just a regular OB? I'm thinking about finding a specialist. Aren't they called Perinatologists? I found a new OB after we lost Trevor, but he hasn't gotten back with me with more information on MTHFR. He was supposed to be "looking into it". Do you all think I would benefit from going to a specialist instead? I really would not be able to handle losing another baby. =( Thanks Ladies! -Stephanie ↑
Hi Trevor's Mommy, I'm so so sorry to read of your loss :( That just tore at my heart...I can't even imagine. Did they never give you ANY reason at all for his passing at a time like that? Did you go to deliver and he passed in delivery or did it happen without you knowing earlier and you just found out at 40.2 weeks? I'm sorry to ask so many questions but I know this has got to be every mom's worst fear. I DO think you need a specialist...OBs don't seem very knowledgeable on this (at least not the ones I've seen). Even the Perinatologist I saw was not very helpful. It is kind of hit and miss who will help with MTHFR treatment. Finally I went to a fertility specialist at a fertility clinic because he specialized in recurrent pregnancy loss. That was the person for me finally. You may need to see a few doctors to get a feel for them . Mine even told me that he was more "liberal" in treatments than most doctors which made me happy. BEEBEE....it sounds like you got the same info as mee too! It sounds all good :) ↑
Trevorsmommy, a perinatologist is high risk pregnancy doc. The peri who did all my testing gave me the choice of staying with him, going back to an OB or doing a combined effort. I agree with Stefkay that you should see a peri at least to review your case and get another opinion about why you lost your son and what kind of treatment you need next time around. I would of chosen to stay with the peri but since he is an hour drive I am doing a combined care. The peri will oversee all my thrombophelia care including ultrasounds and my midwife will oversee my delivery and other OB care. FYI, there is only one peri in my town but dh and I had a bad experience with him during my last pregnancy and we switched. Don't be afraid to find the right doc for you. ↑
Thanks ladies! Sounds like most of you have more than one clotting issue. I think I must have lucked out w/ only one. Is it more or less likely to have multiple? ↑
