Thanks for getting back to me Gina, your info was helpful. Another quick question for you..the specialist that i saw only prescribed me the 1mg of folic acid and nothing else..after reading all of this info on MTHFR and seeing that alot of people are on Vitamin B6 & 12 so i just went to Longs and bought some, so my question is were your Vitamin B 6& 12 prescribed by your doctor, also was the baby asprin prescribed also? I am going to see my regular doctor on Wed. so ill be asking her if she thinks that it is okay that i am taking those vitamins. Thanks for the advice!! Best of luck! ↑
Kristin1,
Yes the B6 and B12 were prescribed the baby aspirin was too but my fertility Dr (which I am begginning to wonder about )said it was not necessary but I am still taking it anyway. ↑
Thanks for your advice Gina, it helps. Yeah the specialist that i saw also said that i didnt need to take baby asprin. So i guess we will just have to wait and see if he was right..we are going to start to conceieve this month...and from what i have read you are too so good luck ↑
Hi Brandy. You are a very strong woman. Thanks for sharing your story. I have 2 copies of C677T. From what I understand from this group and my OB, having MTHFR is manageable, correctable, and many women who have had multiple m/c's have taken all the vitamins and the injections, and have all had healthy babies. Now my OB says I'm to take all the B/folic vitamins now (2 months before ttc) and through pg, and once I get pg, I'm to take baby aspirin all through until after delivery. Not sure about injections yet. See if your doc wants you to start all that now before ttc. Do you know your homocystene level? I've had 2 early
m/c's (6 wks) and was totally upset. My husband is 44 and I'm 36, so we've gotta get a move on! But all I can do is remain calm, take my vitamins, and not over think anything. All the great ladies on this board have been very helpful, so hopefully finding out about your blood mutation and correcting it will be the key! Good luck! Vicki ↑
Hi Ladies (and gentleman)
I just got the call today about some early results with yup, you got it, a hetero MTHRF. I found more information here, from all of you, than I found anywhere else. I just want to say that as unfortunate some of our stories are, I have to say that Erin, you have been a huge blessing to so many women. You are so informative, and so enlightening. I think all of you are smart and doing the right thing - informing yourselves and doing what you CAN do to help. I have a wonderful daughter who is 21 months old and have had 2 miscarriages in the last 6 months. I mc the first at about 9 weeks, and found out on Halloween. The second was just a couple cycles ago, and was pregnant (hormone level 20) and considered 'not pregnant' 3 days later with a hormone level of 3. That all happened within a 32 day cycle. So here we are again. Only just today have I started the folic acid - it's too soon to tell if I'm pg or not. (remind me to sometime tell you the coincidental story of conceiving my daughter) Yes, I have a lot to learn, a lot to research and a lot of q's for the doctor. But isn't she lucky... :o)
So begins my journey....
Blessings to all of you. Liz ↑
Ok ok ok, see I've got a lot to learn. For instance, I will type the letters in proper order next time...MTHFR. Also, here's a Q for any of you which may qualify as a dumb question. When pregnant with MTHFR, is it more important for us to exercise and keep things flowing inside than women without it? Anyone find any research related to that? Thanks! liz ↑
Vicki it's good to hear that your OB says the MTHFR is manageable. I still don’t know what to believe. Some of my doctors still seem to think my MTHFR means nothing even after 2 mc’s and a stillbirth. I did have my homocysteine level tested and it was 7.2 which I guess is normal. All I know is that at least one of my mc’s was chromosomally normal and that an autopsy revealed that my baby boy was perfectly normal. Does anyone know anything about being treated with Lovenox when you are hetero for MTHFR (single copy A1298C)? My RE is suggesting I be treated with this next time I just don’t know if this is a little extreme. I will do whatever it takes but I guess I just want to be sure it is safe. Liz that’s an interesting question about the exercise. I don’t know the answer but would be interested in knowing as well. ↑
Brandy D ~ I am so very sorry to hear about the loss of your son. I also have one copy of A1298C, and I have had 2 miscarriages. My most recent was a little boy with a chromosomal abnormality (Trisomy 22). The first I am not sure about b/c we did not have any pathology conducted. Your story resonates with me, yet I must admit that it scares me b/c I have also been told that a single mutation is nothing to worry about. I am beginning to wonder if doctors even have any certainty about MTHFR. I am in the middle of my 'window of opportunity' and have been taking Folgard. My doctor told me that any kind of baby aspirin or blood thinner would be an 'aggressive treatment.' I am taking baby aspirin anyway and can only wait and hope. I'm thinking of you and everyone else here. Please keep us posted. Amy ↑
Amy...I am right there with you on that point. I do not think the Dr's have any sort of grasp on MTHFR one minute my Dr is telling me that it's not a big deal and to take Folic Acid and the next one is say call immediately when you get a BFP because you will need to take the Levenox shots. I don't know what to think. But like you I am taking the Aspirin to be on the safe side it can't hurt. Brandy I am soo sorry to hear of your story also. I think you are an example that MTHFR is not a minor issue. Best of luck to all. My thoughts are with all of you. ↑
Brandy - I too, am so terribly sorry to hear about the loss of your baby. I absolutely cannot imagine your pain. I tell you, this is something so difficult because it all is so new. Plus, maybe I am speaking for myself, but can any of us actually ever enjoy a pregnancy again?I am already worried sick - there is no 'safe' time. I am and will be a nervous wreck.
Anyhow, I also had a chromosome test run and should be hearing from the doctor next week. I'm praying she doesn't have any worse news for me. When I do hear from her, I'll ask about getting my homocysteine level checked because as for now, she's only told me to start the folic acid.
BTW, my first successful pregnancy and delivery...for other reasons I was taking 3-4 mg of folic acid before pregnancy and throughout. Now I wonder, was it coincidental, or not at all???
Take care ladies, and you are in my prayers...and please pray for us too. I can never have too many prayers in my corner. Liz ↑
Lovenox and Heperin until recently were used to treat MTHFR patients, largely because MTHFR presents a potential clotting hazard like some other chromosomal mutations (Factor V Leiden, etc...). However, because the link between Folic Acid deficiency and MTHFR is so strong, and studies have shown definitively that elevated homocystien levels can be avoided by increased Folic Acid consumption, Lovenox and low molecular weight Heperin are no longer considered necessary, although baby aspirin, which is harmless, may be suggested as a precaution, although some doctors think even this is overkill. My doctor said it was up to me if I wanted to continue with the baby aspirin after the first trimester. I decided to stay with it, but am not convinced it will make any difference in the long run. I am supposed to stop it at 34 weeks. ↑
Hi, I was so glad to read all this information you have on this thread. We lost our son on 12/08/05 due to a combination of MTHFR and Factor 5 Leiden. I was 8 months pregnant when I noticed he had not moved all morning, we went to my OB and they confirmed that my son had passed away, it literally happened that fast, Sunday I had noticed he had slowed down but by Monday morning he was already gone. I had him 2 days later. He was so beautiful. His autopsy came back completely normal that is why they started testing us for genetic issues such as MTHFR, sure enough I am homozygous and my husband is heterozygous and my husband also carries Factor V. Together Alexander, my son inherited my MTHFR and my husband's FActor V due to this combination the cord was so coiled it blocked him from getting the nutrients he needed so he passed away...I am very thankful for the info you have provided on this thread. I jsut wanted to share my story.Thanks for listening. ↑
Mommy to Lex- We're glad to hear from you. I read your story and have been sobbing since. I feel for you and your family.
Btw, is anyone else having a particularly rough day today? I was convinced that I was pg and took a (second) test that said negative. Trust me I know things could be worse, it just set me off for a crappy day!
Take care-
lw ↑
Mommy to Lex,
I am so sorry for the loss of your son. Your story really resonates with me as I lost my son during my 7th month. Like you, it happened very abruptly. He was moving on Sunday morning, and by Sunday night had stopped. Monday morning I found out he had passed. He was very well developed (2 lbs., 7 oz.) so the doctors do think it was a sudden event. I am hetero for MTHFR. My doctors do not really think this is the cause but they do believe my problem is clotting while pregnant. Apparently some women do not test positively for clotting disorders until they are actually pregnant. Has anyone else heard of this? Brandy ↑
Thank you ladies..my name is actually Taryn and yes Brandy I have heard of women testing neg for tests when they are not pregnant, my case is really weird though b/c I actually have a bleeding disorder called Von Willebrand's disease which causes me NOT to clot, I was seeing a perinatologist the whole time b/c they were worried I would hemorrhage however when I had my amnio my peri actually thought of testing me for the other clotting issues but she consulted a geneticist and the geneticist said she had only seen that combo one other time which apparently wasn't enough for her to test me which hurts so bad b/c I truly believe his death was preventable. My point is my hematologist told me that when you are pregnant you are at a hypercoagulant state meaning your blood volume like doubles for the baby so these factors come up when you are pregnant. If my son had inherited my Von Willebrands disease it would have helped him balance out the Factor 5 and MTHFR. My doc has me on 4.5 mg of Folic acid and on a B6 and B12 pill then the bood doc wants me to take aspirin my 2 trimester, my peri doesn't agree with this b/c of my risk for hemorrhage but I think I will do it anyway, they can save me much easier then stopping the silent death that would occur if I wasn't taking it...what does your doc say?? Sorry for this being so long... ↑
Oh my gosh I am so rude, Brandy I am so sorry for the loss of your precious baby boy...no mommy should ever go thru labor to leave the hospital with a memory box, it is just not fair...I am so very sorry.... ↑
Well, the third time was not a charm for me. I was supposed to start on saturday and got a REALLY faint line. Then I got all the symptoms including nausea. My dr drew blood and yesterday they told me it is a chemical pregnancy. My hCg was 35 and should be around 300. I will have more blood taken on Sat, but she said to expect af soon. This was just like #2 mc. The dr says that medically speaking, these dont count as m/c's, so my chances of having a baby are not effected. Any advice,suggestions, success stories? I am really frustrated. Tracey ↑
Tracey-
I had a very similar story with my last pg. I was tested for hCg with a level of 25. (At that point in pg it should have been a 200). I had to go back 2 days later. When I went back, my hCg level dropped to a 3!!! The nurse said a positive pregnant 'state' is a level of 5 or higher. So they said to you that this doesn't count as a mc but a chemical pg? Did they elaborate on 'chemical' pg? I'm curious.. ..needless to say, after that happened, I called the fert specialists immediately. take care. liz ↑
Liz, they have not elaborated yet. I have to go back to the lab saturday for another hCg check. I can't reach my dr until Monday, but I will ask them about this (I am worried because it is my second in a row). My guess is that it is so common 50-60% of pregnancies, that it is not considered a problem. We are more aware of it due to sensitive HPT. I just switched to a specialist after my last m/c in Feb. (the first was in Oct/Nov at 11 weeks.) How soon after you hit hCg 3 did you start your af? I just want to get back on track. Tracey ↑
Hey everyone-I'm doing what I guess we all do and looking for some evidence that you can have healthy babies with this MTHFR thing... I had an appointment with a Hematologist yesterday after having every test know to man and I have the homozygous MTHFR with no elevated homocystine. I've had 3 losses- one at 6 weeks, one at 7 weeks and one at 11 weeks. My Reproductive Endocrinologist put me on a prenatal with extra folic acid and the Hemotologist put me on daily Lovenox injections. He said that his opinion used to be that if your homocystine levels aren't elevated that MTHFR was not your problem and blood thinners wouldn't do anything. Then in the past few months he's been reading studies and says that when some unrelated studies were analyzed as a group that there was a clear connection between MTHFR with no homocystine elevation and recurrent losses. He admitted that he's a little confused himself still, but the data indicates that blood thinners do help. I'm left with the fact that it really is all a gamble and all we can do is increase our chances. It's easy to say that now that I'm not pregnant- I'm so scared of going through another loss, but I'm so ready to be a mom. So I will be ovulating this weekend and have been told to start shooting up the Lovenox 3 days after my "surge" and will also start on Progesterone. Now back into the world of trying to conceive. ↑
I talked to the dr--2 consecutive chemical pregnancies are not common. I have only been on the vitamin therapy (homozygous MTHFR) since March 6th. What is the recommend wait period for this. My nurse just told me 2-3 months. I concieved after only 2 weeks! I am hoping this is the reason for the loss. (my other two m/c's were before any treatment had been recommended.) Cheryl, I know you have the same as me--what did your dr say? Tracey ↑
Tracy, I believe yourself and my wife are simular in some ways. Although she is Hetero MTHFR, we have also been through 2 "chemical" preg, both w/in 6 months of each other. Although we know we have no problems conceiving, it's the keeping to term that is getting us. Amy Nog and Want1More...I hope your TTC is going well. My wife and I kinda went with the let go and let God approach. We stopped focusing on having to get pregnant all together because it was so stressful. Instead we just stopped preventing it. Low and behold, after about a month, we have 2 positive tests (yeah I like the reassurance). So as of Friday morning, we start the jouney once again. I have to agree with what someone said before (sorry no time to scroll through to find out), for those having to deal with MTHFR or being married to someone that is in my case, the fun has been taken out of labor. Neither I nor my wife have no been able to be enjoy this pregnancy yet. Two chemical pregnancies later and we're just looking for the small victories. Starting with a good ultrasound, where the docs can actually see SOMETHING and give us something besides, "looks like another false pregnancy". You are all in my prayers and I ask that you keep us in yours as tomorrow is the first appointment. ↑
Nate-that's awsome!! I want for you and wife to be our success story! You are in my prayers and thoughts. How long have you/wife (what is her name?) been on the meds before ttc? Keep us posted! Tracey ↑
Hi All, Gina from Napa here. Just wanted to let you know we started the Repronex injections for this cycle instead of the Clomid (Clomid made me crazy) Hopefully this will be our month. I'm very scared though 2 miscarriages makes me very nervous. I am taking the required 4mg of the Folic Acid so hopefully we will have a healthy pregnancy. Nate congratulations to you and your wife. Keep us posted. ↑
Tracey-
sorry for the delay. ok, i'm not good at the abbreviations yet, so therefore i'm not sure what 'af' means. however, i'll use my deductive reasoning skills ;o) and assume you mean my period. i talked to the nurse on a monday when she said my hCg was a 3 and then started bleeding on Tuesday night. As for us, we didn't conceive last month (grrrr) and shall give it another whirl in a week or so. i've only been on my FA since mid-late march, but will try again and put our fate in God's hands. this is so FRUSTRATING!!! agh! ok, sorry, i had to let that out. Anyhow, Nate congrats to you and your wife...how far along? I hear you about constantly worrying, but just try to think, this may be the one. Each day brings you one day closer...good luck!
liz ↑
I hope we can be one of the many success stories on this site too. Today will be my wife (nickname - Jetta) and I's first appointment so I guess we will find out "roughly" how far along we are. As far as when we started ttc, it depends on which one of us you ask... She started the meds at the end of Feb, beginning of March. Her last "af" was around the 10th of March. While we were waiting for her to be on the meds for a full month we were (without getting too detailed) not using protection, but at the same time, trying to prevent pregnancy (Withdrawal Method - 27% failure rate). It wasn't until the beginning of April that we stopped trying to prevent pregnancy. So by my clock, we've only been trying for about 18 days, although my wife insists that we probably fell w/in the 27% somewhere in mid March. But like I mentioned before...getting pregnant has not been a problem for us so far, it's been the inability to fertilize the egg as our doc put it. More info to follow. Appt at 2 ET today. ↑
Never done this before, but have been searching for answers, and luckily found this site. I am an MD and never heard of MTHFR until my recent bad luck. I am 35, have three kids (ages 8,6,4) and had not a single problem with those pregnancies. Since then, everything has gone wrong. Had trouble getting pregnant the 4th time, and that ended in fetal demise at 16 weeks with no prior symptoms. Had tests and found out I am homozygous for MTHFR C667T, but had normal homocysteine levels. Switched to a new OB/GYN and told her about this, but was not told to start any other treatment than prenatals. One week ago, we had to make the horrible decision to terminate my 5th pregnancy (after ttc for 1-1/2 years) at 20 weeks as the baby was diagnosed on ultrasound with severe spina bifida (plus hydrocephalus and other problems). I am devastated. I would love to have more kids but feel like I would have to be insane to consider putting myself (and my husband) through such anquish again. It's nice to have some support at this site, and I really do feel your pain. I didn't realize at the time truly how blessed I am to have my children. Now I know. ↑
Just wanted to clarify...the doctor did prescribe extra Folate and baby aspirin once I found out I was pregnant. I guess there are still many questions about a link between MTHFR and spina bifida. But, I suspect the problem could have been helped (prevented???) had I started on the extra folate prior to getting pregnant. The spinal cord is formed very early on--before most women even know they are pregnant. ↑
Tracey, I'm so sorry about the chem PG. Even thought they say they don't count as m/c, I'm sure it is still very difficult. Nate, congratulations to you and Jetta! I am also cautiously pregnant. I got a BFP on April 9 and am now 5w3d. I got a Beta last week and at 18DPO, it was 2807, which I've heard is high. I go in March 24 for an ultrasound. At this point, I'm so scared of ultrasounds, but I'm putting my faith in god that everything will be ok. I'm still stressing about taking Lovenox or not. My OB says no. I think I may visit a high risk doc. Take care all. Erin, if you're out there, we could use an update on your status for some hope. ↑
