MTFHR PART 2

19 Replies
tracy72 - February 22

I figured I would start it since the other one was WAY too long :)

 

stefkay - February 22

Thank you tracy!!! I was so hoping to see a part 2 on here. I've wanted to post on the other many times but didn't because it took almost 5 mins. for the page to load, then when I would type in a post and finally hit send it would say I was logged out and lose my post :-) lol...the other post has tons of helpful info, but maybe we can get new experiences going here? For me, I'm 31 and dbf is 29. I just had my 4th mc on jan 23rd at what should have been a little over 11 weeks based on lmp. My pregnancy had been dated smaller by 2 weeks from early on so I knew something was wrong, but dr didn't seem worried b/c we saw a hb at second u/s. Apparently the heart stopped soon after and I was sent to a peri weeks later who did an u/s and found the baby had died weeks earlier. I was scheduled for a d&c , but m/c naturally before that happened. It took 4 weeks in all for my body to do it on it's own. The peri was wonderful (although I only saw her once) and ordered a bunch of blood tests, chromosome studies etc. on me. All came back "normal" except I have the heterozygous MTHFR C677T. Fetal tissue tests came back normal from what the nurse said when she called a while back. I see the regular OB (I was sent back to her) tomorrow to discuss what to do now. I am afraid the dr will probably say this MTHFR isn't the problem, but from what I've learned here I can't dismiss it. The peri said we would do extra folic and B6 & B12 when I get pg again. I plan to do baby aspirin on my own and have been since the m/c. I think the OB will do some other testing (FSH, endometrial biopsy??, etc) but I won't know more till tomorrow. I'm worried right now about problems being with my partner as he doesn't have insurance and isn't on mine, so not sure we can afford for testing for him if it comes to that. He has a 10 yr old son from a previous marriage, so not sure if the problem may lie with us combined--i sure hope not. Anyways, sorry this is so long...have lots of questions still and not a ton of answers yet :-)

 

stefkay - February 22

Oh, and I wanted to add that since m/c I take daily : a prescription prenatal with 1mg folic in it, a baby aspirin, an 800mcg folic acid, a 200 mg B6, a 1000mcg B12, a vitamin E, a vitamin C and 2 omega 3 purified fish oil capsules. WHEW! didn't think it was that much till i just typed it all out....lol

 

tracy72 - February 22

Hi there Stefkay. I am glad you posted. It took me at least 10 min to load the other page so I figured this would be easier. Gosh I am sorry to hear about your miscarriages. :( I have had 2 myself and got tested and have hetero compound gene mutations. A copy of each of the genes. I definitely would not rule out the MTFHR as being a cause of the miscarriage because my dr told me it could have and could have not been. I didn't understand why I had 2 miscarriages in a row and my nurse finally did a work up and then she found out I have it. The best thing about it is they can give you lovenox which I just started yesterday. I found out I am pregnant again 3 months after my last miscarriage. The good thing is that lovenox dosen't hurt if you dont' really need it. I am on a low dose daily so hopefully it will make a difference for me. Both of my miscarriages were around 8-10 weeks. Its like they just stopped growing. I dont' know what happened. You have to wonder when you have 4 miscarriages if something is wrong Were all your m/c's close together? Mine were back to back. I am so glad to have found this site and I love hearing others that have the same gene problem. Good luck to you Stefkay I hope you have a baby really soon!

 

stefkay - February 22

Congratulations tracy!!! That's awesome...I think I understood that right, you are currently pregnant? Hope I didn't misunderstand...As for me, it is kind of a toss up on the miscarriages because actually the 2 in the middle were chemical pregnancies and I count them as losses, but my dr. doesn't really. Years ago I aborted my very first pregnancy, long story, but it was a d&c under 12 weeks. fast forward a few years and I got pregnant with current bf of 6 years and I lost it at about 6 weeks--had a d&c. I immediately got pregnant the next month, I think it was before I even got one period back and that ended up being a chemical (dr's office showed positive blood, but then it went down instead of up). Same exact thing happened about 2 months later. I went back on birth control for about a year and a half and then almost 2 years to the day I got pregnant again and this time lost it later, but the baby died at about the same point 6-7 weeks. Sooooo, I guess it could count as my second miscarriage clinically. I hopefully will find out more tomorrow. The OB I'm going to is now just my GYN doc because my insurance won't cover her for OB when I'm pregnant, I'm not sure, but I think if I get pg again I'll go straight back to the perinatologist she sent me to from the start. She is the one (the peri) who said we'd do vitamins,but didn't mention lovenox or heparin. I'll have lots of questions tomorrow, so hopefully some answers. I have a gut feeling this obgyn is going to say let's test luteal phase stuff, and a couple other things, but dismiss the MTHFR. I wish I could print out the previous thread and take it to her so she can see how many people are affected by this, but she'd look at my like I'm a complete loon. ha ha

 

stefkay - February 23

bump...looks like this thread may not last :-) as the other is still going strong! Anybody want to post their experience here as it is sooooo much easier to read and post. I just can't spend 10 mins trying to open the other thread. It's frozen up my internet browser more than once... :-(

 

tracy72 - February 23

Hi ya Stef! I would definitely see the peri dr if you can. Yes I am pregnant..about 4 weeks and 2 days. I go in today for my workup of hcg values because I am so parnoid of miscarrying for a third time in a row. I have 3 big bruises so far on my stomach. The lovenox really stings me going on. I hope you get some questions answered tommorrow and you'll be able to find something out. Thats weird..I lost my babies around 6-7 weeks also when I miscarried also. Its just like they stopped growing. My nurse said all it takes is a pinhead size clot to abort it. Even if the gene mutation did not directly cause my miscarriages they definitely said it could not hurt. I'm sure its the same if your dr will prescribe it. Its really weird because some dr's don't think its that serious then some will send you straight to the peri I am kind of in the middle I guess. My nurse think it might have caused my miscarriage s and told me to try lovenox since I have 2 copies of the gene. I think age is having a lot to do with it also. I am 34. Please post when you get get back from you DR:) Bump!

 

stefkay - February 23

Hi tracy! I will post soon, I am getting ready to go and am nervous as hell! Don't know why...my dr is really nice, but rather brash (is that the word???) She talks fast and is kind of tactless...it's hard to explain. Just kind of a know it all type (ok, well she IS the doctor, lol) that seems like she might brush off my concerns...Ok, enough worrying. I'll be back on soon hopefully with some info!

 

tracy72 - February 23

I'll be around! GL!!!!!!!!

 

stefkay - February 23

Hi tracy, Ok here's the scoop ((deep breath))...Dr. said she doesn't think the MTHFR caused the miscarriages, yet she didn't seem to talk much about it as I don't think she knew too much. The peri seemed to know more, so I'm going to be going back to her if and when I get pg again (the OBgyn I saw today ok'd this). She is going to do an FSH test on me on cd 3 of this coming cycle (if it ever comes!) and then she wants to do an endometrial biopsy at the end of the cycle to test for luteal phase defect. And she wants to do a hysteropino something (an xray of the uterus). dbf is going to give a s____n sample for a s____n a___lysis next week too. She said fetal tissue tested normal, no chromosome problems. Genetic/chromosome (not sure if they are the same?) testing on my bf would be insanely expensive, so I think we will save that for very last resort or if another m/c occurs. I don't even want to think of going there, but not sure what else to do. She gave me a prescription for 5mg folic acid and I took it to the pharmacy and they couldn't fill it because they have to call her about the dosage? That's what they told me when i went to pick it up, so that will have to wait till monday. Hmmmmm what else? Oh, she said I can take baby aspirin too, but didn't seem to want to discuss blood thinners. I'll wait to ask the peri about that later then. Is there anything else that you or anyone else that may read this might suggest I look into for testing? There is soooo sooo many tests out there that I just don't know what to do. Oh, sorry this is getting long, but she gave me a card for and RE that is in a city almost 4 hrs from me and said I can go there for further testing (I guess immune stuff?) and I asked if there was any other RE's IN town and she said she is it (ok, I had no idea she was an RE) but she doesn't have the labs and testing facilities there and I'd have to go out of town. Not sure what to do there that can't be done here...

 

stefkay - February 23

ok, just reread that--I am so so tired right now so please forgive that. some of it didn't make sense--meant to say "there ARE so many tests available" and "asked if there are any other RE's in town"....ok, I'd better go to bed :-)

 

tracy72 - February 24

wow that was a long note,lol I would talk to a peri and see what they say.My nurse did not know much about the gene mutation and so she called a peri and thats when he said to try lovenox. I don't understand why they won't try lovenox my nurse said it could not hurt..especially being on a low dose. Let me know what you find out! I got my blood test back today for my first set of hcg and it was 800 at 17 dpo which I am very happy with. It s a lot higher this time since I started the lovenox

 

stefkay - February 24

YAY!!! That is a great number! I remember my first hcg test was at 14 or 15 dpo I think and it was 72! It did double, but the doctor only checked that it doubled that once and never did again. I'm actually excited to go back to the peri from the start because she was the one who ordered all of the initial tests right off the bat without me even having to ask. She called me (other ob never did) herself and explained the MTHFR as well as the other tests and explained treatment. I was impressed because it doesn't seem like most doctors do that, at least the ones I've had :-) I tried to post this on the other MTHFR thread to get suggestions on tests, etc. But, again it kicked it out and I just gave up. Good luck and keep me posted as to how everything goes!!!

 

rachelD. - February 24

Hi girls, I'm a veteran from the 1st MTHFR thread. I will still check that one, but I hope this one catches on. The other one is MILES long(but packed with useful info!). I just want to encourage you both. I have 3 healthy kids, but have had 2 losses in the past 2yrs. Our son Ethan died in uetero at 18wks in Aug. '05 and our girl Emma at 20wks in March '06. I was then found to have MTHFR mutation. I was put on 81mg baby aspirin, 4mg FA, B6, B12, and as soon as they saw the H/B this time I was started on Heparin. I am now almost 28wks pg!!!! God is very good to me. We are having a girl and they say she is getting BIG. There are others with success stories on the other thread. I know I am not done yet, but I am 8wks farther than with Emma, and I have faith that we will have this baby. Don't give up. It's a hard road, but when your baby keeps you up kicking and rolling all night it is worth it.

 

stefkay - February 24

thank you Rachel so much! And congratulations on your baby girl :-) I love to hear success stories. I'm still learning about this and I learned a lot from the other thread. If I could just access it more easily, it would be perfect ! I do have a question... I remember that my dr. yesterday said that she doesn't think the MTHFR caused my m/c's because my losses were early and that there wasn't any chromosome abnormality in the fetus. I understand the reasoning there, that if the baby isn't getting enough folic then a neural tube defect could occur, but I've seen so many women on this thread with MTHFR and EARLY losses (first tri) that I can't dismiss it! She made it sound like MTHFR only causes 2nd tri and later losses? I could be wrong....she just doesn't seem to deal with it much and I'm glad I'm going back to the perinatologist and not this ob when I get pg again...

 

stefkay - February 24

ahhh, sorry! I forgot to ask, but when you guys take the 4mg folic acid (my dr. gave me a prescription for this) do you also take a prenatal too? I have a prescrip prenatal I take right now with 1mg of folic in it, so I was going to continue that AND take the 4 mg folic on top of it. Is that OK?

 

Heidi Jo - February 25

Hi Girls~ I also got started on the other thread. I don't have any trouble accessing it but thought I would post here also. I too am always looking for new info. First, I will give a little recap of my story....I have 2 wonderful children. A son that is 7 and a daughter that is 4. Since then I have had three lossed in a row. The first one I was 13 weeks along, the second 8 weeks and this one I was 11 weeks and we did find out that it was a baby girl. I think that hurt the most. I really didn't want to know the gender for some reason but we had genetic testing done and there it was......we found that she had Triploidy and a transloction on the 6th chomosome so my husband and I were both checked. Nothing, thank God we were fine. So that ruled that out. That is when the 18 viles of blood came in and now I go in on the 12th of March to find out the final results. I know that something did come up relating to the MTFHR but I can't tell you exactly what until I meet with my Dr, the nurse was new and I don't think really understood herself what she was trying to realy to me. I just know that before we start to try again (which I found as very good news that we even can try, I was so scared it would be really bad and she wouldn't advise ever trying again) that I take extra folic acid, vit B12, vit B6 and a baby aspirin. So obviously there is something going on. .................STEFKAY~ I will go out on a limb here and say that from what my doctor said that yes, MTFHR can play a part in early lossed too. She has thought all along with me that this is what my "problem" was and that it is easily corrected and she has delivered several healthy babies after multiple losses. This really gives me hope and I sure hope it does you too. I don't know if when I go in to talk to here that she won't say that if and when I do get pregnant again that I have to be on heparin or lovenox but the nurse didn't mention it so I can let you know but not for a couple more weeks. Sorry.....My losses definately would be considered early whe we read of the 28 week or 32 week losses so....it still hurts but I just can't imagine for those late losses. It just simply breaks my heart!! For all of you that are so excidedly pregant right now.......yeah! Good Luck and I am so pumped for you! I hope the rest of us on this thread can join you very soon and God will give us all that healthy baby he has waiting for us!!!!!!! Sorry so long!

 

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