It seems like there are so many new faces on here each day, it's great to have a community, and yet sad that this is so common. I am waiting for day one to arrive! I am struggling to feel optimistic about this all. It is such a gamble. I don't think my new insurance covers lovenox. I may have to take heprin. does anyone else do this? I have definately heard that lovenox is better, but is there any worry with heprin? I know the lovenox is $1000/month! I can't afford that. Sela - I have struggled all year with having good friends who were due within days of all three of my losses....Two due dates have already passed and it is definately bittersweet. I am trying to be happy for my friends. Holding their babies is strange though...b/c it really hits me. Please think/pray for us this week as we start all these shots, It is so much to invest in emotionally each month. I am not sure what I have left in me. ↑
Nurskarlett: wow, did what you say really hit home! I had two "later" losses, one in 2004, the other last April. Both times I had a sister-in-law (two different ones) who were pregnant at the same time, and went on to have healthy babies without problems. Of course I am happy for them, but I look at their kids and know they would have had a cousin just their age. Of course, that is in addition to the seemingly dozens of other friends who have been pregnant all around me all the time. I hate to sound jealous, but it really is painful. And (forgive me for this bit of feeling sorry for myself), last August when I would have been due, I told my husband that I had to get away for the week. We went to Mexico, and were having a fine time until I got deathly ill from food poisoning and ended up in the hospital---in MEXICO!!! It was just such added misery to think that yes, I did end up in the hospital that week after all, but not for a baby. What a rotten year. Thanks for letting me get that out, and it does help to know I'm not alone in my feelings....thanks. ↑
Okay first Kim h---I am sooo confused. From what I understand is that the MTHFR is inherited. I am also homozygous for the CT667 mutation. Homo, meaning two of the same. One from mom and one from dad.........anyone else have any insight on this? nurseskarlett----------Good to hear no molar pg. I've only had one "normal" m/c and it was much easier for me to deal with than the later term ones. However, 3 losses in 8 months is a lot to deal with. Talk about an emotional roller coaster. ..Anticipation, then excitement, then worry, then devastation and depression and then reset the cycle. It is hard not to think about the children that we should be having right now or that should be with us now. I can say that I don't think about it as much as I did the first couple times. I'd hate to think I've become numb, I think I just deal better than I did before. However, I do occassionally think about the fact that my first loss, Christian, would be 8 this year. Mine and my current husband's eldest would be 5. I just can't imagine. kellied----------The peri that I consulted with today was telling me that he prefers straight heparin over Lovenox, mostly due to the cost. He said that there are no data proving that Lovenox is any better but that it is my choice when the time comes as to which to use next time around. I hope that helps. ↑
Kim H- It was my understanding also (being homo C677T) that the condition is genetic. The whole reason I got tested was because my 56 year old mother had a heart attack and stroke in the same day. My OB/GYN took that info and decided to test me for the MTHFR as a precautionary measure as my husband and I are looking to start a family. Both my mother and I have tested positive for MTHFR whatever that means. It's all so crazy. I talked with my Hemo. on Friday who told me to make an appt. as SOON as I get Pg so that I can go on Lovenox right away. I guess I have high Protein A levels too- (Anyone else?) I had NO idea that Lovenox was SO expensive! Holy COW! I thought the injections were all I'd have to cope with! ***Skarlett, Thinking of you, hope all of this passes easily and quickly for you-OH and last time I wrote one of my best friends had just gotten Pg- now, one of my Husbands BF's wife is pregnant with Triplets- Blessing or curse...not sure if I'm envious of that one! : ) Ladies- Sending you all good thoughts and loads of love- we are all on the same team here! ↑
Sela and Stac- I don't understand it either, but I am going to find out why the nurse told me this info, maybe she and my doctor are not communicating properly. She also told me that my doc. will start me on "Lovacel" when I become preg. I have tried looking this med. up on web and only found one site that explains it as a tablet not injections. and my doc. told me I would be on injections. So I guess I really need to have another conversation with him since I can't seen to get any straight answers from his nurse. oh well life just keeps getting more complicated. ↑
Well, it’s been awhile since I’ve posted, but I keep up with all the new posts on a regular basis. I’m amazed at how many new faces have found this thread since I started reading up on MTHFR here last March. On April 27th I posted my story and I wanted to give you an update….there is hope! I’m typing this note with only one hand as I hold Paige Elizabeth in my other arm (born 1/18 at 39 weeks). There are still so many questions and uncertainty surrounding MTHFR, but know that amidst the heart ache there is hope. Nate B and Want One More and now little Paige are proof of that. I know so many of you are still hurting….I too think of all the dates and “should have beens” when I look at the calendar or see babies that are the same age Kailey would have been, please know you are not alone. In fact there are many of us here and the support is amazing. It can be so hard, but keep the faith and know there is hope! You all continue to be in my thoughts and prayers!! ~marcy ↑
Hi- I am new to posting, but not researching MTHFR. I was diagnosed in November and was very nervous because they didn't start my Lovenox until I was 9 weeks... I also didn't read many positive postings about pregnancy. Well, I am 17 weeks pregnant with a healthy boy (at least according to amnio:) After 2 losses, I can empathise with many of you- the shots are ewell worth it. Just keep your hopes up, It CAN happen! ↑
I feel like I have so much to say today! Stac - it's nice to know someone has had experience with ureaplasma. I'd never heard of it before and they caught it only after I found out I was pregnant. So they had to put me on arithromicin instead of the antibiotics they normally would. They put me (and my husband) on for 2 weeks but they won't test again to see if the infection is gone because they are afraid to open up my cervix to do the test. I am worried I'll have a flare up so I am going to ask my doctor tomorrow if there's anything he can do. If you ever want to drive to Indiana to see Dr. Wheeler let me know - he's the best and I trust him since he's had so much experience with MTHFR because of his wife.
Carriejo78 and Kellidp1198 - I understand your worry about the shots. They didn't start me on Heparin until about 10 weeks. They wanted to make sure I had a heartbeat and things were going well. I was told the only difference between Lovenox and Heparin is $1,000 a week. I don't know if that's true but I know I couldn't afford that much $$. I do two shots a day of Heparin and a month's supply on my Blue Cross Blue Shield insurance is $10. Lovenox isn't covered for me. The doctor said there are more risks if I don't do the shots so I got over my fear very quickly and now it's not bad at all.
Nurseskarlett - I know exactly how you feel. Jan. 1 was the due date for our little angel in heaven and it was a tough day. My family planned a cruise at Christmas so I wouldn't have to be sitting at home thinking about it. The funny thing is the grief hit me early on of course, but my husband and I really grieved when his sister (who was pregnant with me) gave birth this October. It was one of my darkest days. I remember having to leave work in the middle of the day because I couldn't stop crying at my desk. I work with her mother-in-law so that was even worse. I didn't want to take away her joy but I just couldn't face it when she was showing everyone pictures. We put on a strong front and went to the hospital to see our little nephew and it helped - it was a healing process - we couldn't be sad holding this new life in our arms - but it was definitely the toughest day for us. I feel like that was the turning point for me. The thing that amazed me was how many women came out of the woodwork to tell me they'd miscarried as well. It's amazing how many have gone through the same thing we have and no one talks about it much. That breaks my heart a little. I am even thinking about starting a support group for women who've miscarried - anything to help reach out to those going through this tough time. This email forum is definitely a support group for me! ↑
Hello everyone, Well yesterday my m/c finally happened naturally. I would have been almost 12 weeks. The horrible part was playing "catch the fetus" as I had to collect what came out for the dr. to test and (I'm sorry, tmi i know) I never knew that I could hold that much blood. But, it is over and the pain is almost gone (physically). Now I must wait 3-4 weeks for the results. I'm not sure what all they are testing for, but mainly chromosomal things, etc. It is too hard to go back and read all of the posts here as it would take too long, but from the last few posts I've read, it sounds hopeful? For those that have been on here for a while are there a lot of success stories with the MTHFR? It's funny because I told my sister about the mutation and she said "It sounds like the motherf**ker mutation to me"...LOL! That was one of the first things that actually made me laugh in weeks. How appropriate! Anyways, another question: I only tested positive for a heterozygous mutation (this is my 4th m/c and the only one where any testing was done at all) and I did a little internet research and it seems that the hetero MTHFR is common in like 44% of the population and that it wouldn't normally cause miscarriages. I don't feel like I'm just having "bad luck". I tested negative for factor V Leiden and factor 2 something along with a bunch of other stuff. My bf hasn't been tested yet and I wonder if he has the mutation? I've had all of these miscarriages with him, but he has a healthy son, age 10 from a previous relationship. I don't want the MTHFR, but I start to worry that if that's not what is causing my m/c's then what is??? Sorry so long, but I have so many questions still... ↑
Tnanks Nicoole and Stac for the imput on the lovenox/heprin issue. I am starting on ir at ovulation day because I had a bloodclot form before the heartbeat started last time. We are pulling out all the stops this time. ↑
HI guys-
yes you're right. i can't tell you every month of the year that either a)i got pg, b)I would've delivered or c) i mc'd. in fact, mym sister and i were pg at the same time. i obviously mc'd (the 2nd one) and she delivered a baby the day AFTER my birthday, the day AFTER mother's day, and the same week as I would have. needless to say, that was the suckiest day of my recent life! we all too, inderstand eachother's pain and kind of suffer silently. who was one of the last postings, stefkay, i agree. my 3 mc's were not from mthfr. perhaps my 9week one was, but i am confident that the last 2 were from bad eggs. unfortunately, we have to go through A LOT of friggin pain and suffering to figure out why this is happening....there is still a glimmer of hope...there HAS to be. lots of love - lw ↑
Hi Liz, yes I agree--it seems now (and maybe it is my perception at this point) that everyone and their dog is pregnant or just had a baby. One of my neighbors just delivered and another is due in a couple of months. A good friend of mine found out she was pg on almost the same day as me and all she does is complain about morning sickness :-) I can't be jealous or it will eat me up. I know it will get better. It's almost like this last m/c was easier than the first ones...maybe expectations? I just want to get excited and stay excited about a pregnancy--there's no innocence left in it at all for me. Anyways, blah blah blah...I wanted to ask, what are the causes of bad eggs? I'm sorry, I know the question may sound dense, but I'd like to know...is it just an age thing or are there things that I can do to help my eggs not be bad (ok, the questions are now sounding more and more moronic) :-) I asked my dr. about testing my FSH levels b/c a friend said it has something to do with the hormone that helps eggs mature? Any info is greatly appreciated!!! ↑
Stefkay ~ I'm so sorry for what you must be going through. I have the A1298C mutation, and I have m/c twice. My 2nd m/c (just over a year ago RIGHT before Christmas) was a little boy with Trisomy 22. I am not sure what the cause of my first one was...maybe the MTHFR? Anyway, when another year went by (Dec 2005 to Dec 2006) and I did not even get a blink pregnant, my hub and I started to go to Shady Grove Fertility in Rockville, MD. There, my FSH levels were tested. I tested at a 10.3. I was told that for my age (34) this was a bit high. However, the doctor said that they like it to be below 10. Anything between 10 and 20 is not so hot (though not bad), and once your levels are over 20, you are heading toward menopause (like I want to think about that!). So, the doctor also said that this level is really determined by 3 things: heredity, drinking, smoking. I never ever smoked, drank occasionally, and well - heredity is what it is. The doc also said that he has seen 20 year-olds with levels far over 20, and that he has seen 40 year-olds with levels under 10. I guess it just depends, but I know that I felt better getting some info. Hang in there! ********And Liz - thanks for understanding about the teacher thing. Just the other day, one of my little boys asked me: "Mrs. N do you have a baby?" When I answered that I did not, he asked: "Why?" Oh boy. My best to all of you....AMY ↑
stefkay and anyone else who may be interested, Ms. Liz, my OB just happened to mention to me in our last conversation that eating "properly" the week before ovulation increases the quality of your eggs. She said the whole high fiber/protein diet has been proven to be effective. Oh, and stef, your sister is not alone. The perinatolgist in the hospital told me that he once went to conference where they were discussing MTHFR and the speaker---I think was Canadian--- actually said something very similar to what your sister did. It wasn't quite on purpose but when you try to pronounce the abbreviation, that is kinda what comes out----------------how appropriate. ↑
Thank you guys for the info! I tested positive for what my dr. said was a mutation on one of the genes. So I gathered from that I am heterozygous, but I don't know which one (A1298C or C677T--I only knew about those from reading here) She could probably tell me if I'd call the office though. I am somewhat discouraged because it seems that a single mutation wouldn't be the cause of the m/c's. Hummm, well I am 31 yrs old, so I know I still have time, but this bad egg thing is bugging me. Is PAST drinking or smoking going to affect me today? I haven't had any alcohol at all in almost 3 years. I don't know about the hereditary part, but the women in my family have all been VERY fertile (3+ children each and hardly any miscarriages), BUT I have been a smoker since I was about 19 and quit a week after I found out I was pregnant this last time. I've known soooo many people who smoked prior to pregnancy and were fine--even some who smoke through their pregnancies and had healthy babies that I don't know what to think. I am so healthy in every other way (eat well, exercise, drink lots of water and take vitamins and no booze or drugs). The day I found out I was going to m/c I lit up and started smoking again. I was a wreck. I'm feeling really bad about it and worried now....ugh ↑
Stefkay ~ Gosh, I don't blame you for having a cigarette when you found out you were miscarrying. After my last miscarriage, I sought out the wine myself. It's so hard when you feel as though you have been so good for so long (no caffeine, no alcohol, no tuna steak, no nothing ). All of the sudden, it seems as though it was for nothing. I understand that. :(****** Have you had any of your previous babies tested for chromosomal issues? My last one was Trisomy 22. I was really shocked, but at least I knew that neither the MTHFR nor my habits were not the problem. In a way, it is comforting to have more information (in a way). ****You are young at 31 (a few years younger than I am), and my FSH levels were just starting to become high. Will your doc give you this test? It will probably put your mind at ease. I also heard a story about a friend of a friend whose FSH levels were at a 12. Not too bad. She started taking clomid. Of 15 eggs that she produced one month (yes...that is a ton), only 3 tested out as being chromosomally normal. Sometimes, I guess we just don't know. *****As I have been told (as hard as it is to hear), at least our bodies are getting pregnant. I really believe that our bodies eventually want to do the right thing. Hang in there Stefkay, and keep us posted. :) AMY ↑
hey there - ok. now i feel terrible. stefkay, i hope i haven't freaked you out about the egg thing. honestly, here's what dr. schoolcraft said to me over the phone just three weeks ago: women who truly have 'bad eggs' don't even miscarry - they just don't get pregnant. in addition, he said he finds it unbelievable since i am only 32. so aha! see, there is hope. i've read about egg quality and i've read about environmental factors, genetic factors, etc. in fact, i know there are good eggs in there, we all have em. it's just a process of finding them! some take longer to find than others. and as far as eating right , oh boy, i've been in this 'i don't care about anything' funk now and have been on a junkfoodfest. i just had a dark hershey bar and my rationale was that it was dark choc, healthy for my heart! HA!!! hey i need some silver lining...hang in there. i'm so sorry you are going through the mc process (with me right now i might add). as much as doctors can do, sometimes i feel it is so cruel and inhumane the way they expect us to 'end' these things. i mean, c'mon.! although being terrible, i was much more pleased with having a d&c - my babe didn't want to come out on his/her own last time. and i agree, yes, it's painful, but now it's what i expect to happen, this one hurt emotionally the least. i've been scarred now too much. that's why i've dubbed myself the new Little Miss Negative. anything else will just have to be a pleasant surprise...or a miracle. i've rambled way too much - take care :o)lw ↑
Oh Lord! Girls, if you think I'm a worrier now, you should have heard me during the few weeks I was pregnant. ;-) It was insane...lol! Thank you Amy and Liz for your help and input, it does make me feel better. I'm gettin tougher and I can handle the hard to swallow stuff a bit better...I think I just want answers!!! Don't we all. Ok, I have to ask and I won't dwell on it anymore (maybe), but Amy, did the person you told me about start taking the clomid and THEN find out that she only had 3 good eggs out of 15? How do they know how many eggs you produce each month? Was she doing like IUI or IVF? I hear the clomid can help egg quality, yet I've read in other places that nothing can up the quality of eggs-that if they are bad, they stay bad (I'd rather not believe that--they say if you stop smoking, etc, that your fertility improves to that of a non-smoker). Anyways, I hope my dr. will test the FSH. I gave her a list (yes I'm anal) of concerns that I have b/c she's a fast talker and I can't get a word in...and I asked her about testing for that. We'll see...I think you have to do it on the 3rd day of your cycle. Not sure when I'll have one again though. Oh, just checking...but does anyone else have problems loading this page? It takes ages to load and to post, etc. for me and I have a super fast computer/internet connection....just wondering. Thanks again! ↑
StefKay ~ Yes and yes. :) I, too, have problems loading this page. And sometimes, my post does not show up for a while. Hmmm.......and to answer the question about the friend on Clomid: Yes, she was doing IUI. I have heard both good and bad things about Clomid. I was on it for 3 months, and the only thing that happened was that I turned completely moody. I later found out that while Clomid does increase egg production, it also decreases the thickness of your uterine lining (making implantation tough) and also makes the cervical mucous thicker (making it more difficult for sperm to get through). I was so upset when I found this out (our fertility doc told us this when we switched over to him from the regular OBGYN). So....the saga continues. *******Another word about the good old eggs. In my last posting, I probably did not explain the numbers as well as I could have. Our fertility doc also told us that although this number increases with age, it does not steadily do so. In other words, the number can kind of zig-zag its way up. This means that even though the FSH level one month might be a 10.3 (as it was in my case), the next month it might be a 9.5 (or, on the bad side of things could be an 11.5). The doc said that getting a strong read on an ovulation kit one month may mean that your numbers are better off for that particular month. ********I hope that this helps! :) AMY ↑
Hi all, I have not posted in a while, but I am was diagnosed back in Oct with compound hetero for both genes. After my last miscarriage in oct I have not been able to get pregnant since diagnosed. I am not sure what I am doing wrong. All I was told to be on was baby aspirin. Should I go back on Folic Acid and B12 vitamins? I am not sure what else to try. Any tips is greatly appreciated. Before when I got PG it seems so easy now since I found out I have this gene it seems like I just can't get pregnant again. I am thinking of trying green tea,etc. in addition to help with fertility now since just the baby asprin doesn't seem to be working.
Thanks for listening. I feel so frustrated this month. AF just came 3 days ago. I thought for sure I had her beat this month. ↑
Hi Tracy, it's an odd thing for me because the month before I got pregnant and the month of, I took my regular vitamins which included folic acid, B6, B12 and I also took baby aspirin daily. The day I got my bfp I stopped it all and started the prescription prenatal. I was spotting and I thought the baby aspirin was causing the spotting. When I stopped taking it the spotting stopped. Fast forward to my m/c then the dr. did tests and told me about the MTHFR mutation. I don't know if it has caused my miscarriages in my situation as I don't think I have the compound hetero (just hetero) and I know I'm not homozygous. So, I naturally have been kind of po'd that I stopped taking what they would have had me take had I known. I've always taken individual vitamins especially the B's. The aspirin I added b/c I heard it was helpful in ttc, but that you don't want to take (in normal circumstances) while pregnant. Sorry to ramble, but from what I've read here it doesn't hurt to take the B vitamins and extra folic with the baby aspirin, so I'm going to do it regardless of whether I get pregnant again or not. I'll continue if I do just because I figure I might as well try something different this time for my peace of mind. :-) ↑
I just made an appt with a new doc for monday. HE has extensive experience with MTFHR gene mutation. I had a bunch of questions and wanted some answer and my nurse did not really know a lot about this gene mutation.Hopefully he can help me out ↑
This is my second miscarriage in a row. The first one was on Halloween - right at 6 weeks and the bleeding didn't last very long. We waited for another normal period and then tried again. My second miscarriage was confirmed yesterday - on my birthday :( I would have been 8 weeks pregnant yesterday but they found nothing in my uterus (good because no d&c) but I loss a lot of tissue on Tues night/Wed morning. I began spotting on 1/16 and began bleeding heavily on 1/23. I am still bleeding - going on 11 days now but am not passing any more tissue. We're hoping to try again after my next normal period but I am already undergoing testing since I had 2 miscarriages right in a row. We're hoping for our 1st baby sometime soon - I'm already 32! Where should we even start testing wise? They seemed a bit concerned that I lost 2 in a row - not good! ↑
Sue I can't tell you how similiar your post is to my situation. I have had repeated 2 m/c's since last may. The last one in Oct 28th..which was my b-day also. It was the worst feeling. I haad a natural miscarriage and was around 7 weeks when I lost each of them. After my 2nd they did testing I found I am compound hetero for both genes. I am on baby asprin right now. My nurse was proactive and tested after my 2nd miscarriage and thats how I found out. I am deeply sorry you have to go through a miscarriage and I know what its like for it to be on your b-day also. I bled for a good 8 days after my last m/c and now I have had three cycles and can't get PG again. The best advice I can give from my own experience is that if you had 2 in a row like me ask them to do a blood workup. Thats how I found out.If you ever want to chat since we have so much in common you can email me at ohsocute at gmail dot com. That goes for anyone that wants to keep in touch because I really don't check this thread to much lately and it helps to have some ladies that I can relate to that have this gene. ↑
Also, this might be a really stupid question..but when I found out I had this blood clotting gene I am not sure if they tested for homocystine levels or is that a different test? How would they know if I had high levels? I just want to know what to ask my dr when I go in there. Any help is appreciated. ↑
Tracy, please post here when you get some answers! Most of us probably don't have access to a dr. who specializes in this mutation. Also, this is crazy weird, but my first miscarriage was also on my birthday! I started having horrible pain the night before and went to the ER, the next morning on my b-day they did the d&c. It was horrible...that was Jan.5 two years ago. This time I m/c on Jan.23, but found out that I was going to m/c on Jan. 16--that day they told me that the baby stopped growing/hb stopped almost 3 weeks earlier which is scarily close to my birthday yet again. How weird is that? I think I will no longer try to get pregnant in November or December...lol ↑
I'll be sure to post. Wow..all of us had m/c's on her b-day..wow..kind of makes you think there is some higher power or something. My dr I am going to on Monday, he does not specialize in women with this gene mutation, but he has been treating them for over 10 years and has a lot of experience with them. He is just a general ob/gyn although he was highly recommeded on the phone by the advice nurse.She had worked with him before. If nothing else, I just want to know more about the gene mutation. I have read on different websites the different protocol for this and it ranges everything from lovenox after ovulation to just taking folguard or do both. I am just really confused. Whenver I have kids does anyone know the likelihood I will pass this gene onto them? I'll ask my dr on monday also ↑
I don't remember who mentioned the green tea, but it is not recommended for pregnant women or especially MTHFR's as it inhibits the absorbsion of FA. -----I am 36, and had 3 m/c's within 8months. (11 weeks, 6, and 51/2 weeks. I have been tested for the regular crap (MTHFR homo), follicle count, uterine structure, FSH (which was really high, but retested the next month and was "normal"), & chromosomal karotyping. Oh and Natural Killer cells in the uterus that attack embyos --this dr put me on heparin/progesterone, and wanted to do a transfusion of antibodies upon pregnancy.(I was positive for this one, but told by another dr that the whole idea was crap!) I used to get pregnant easily, but I have not been pregnant since April 06. I am now on Clomid and doing IUI's (this is our second month), and the dr is checking to see if the lining is thick enough--if not, they will give me estrogen next month. This specialist says that we will have a baby, it will just take time. It has been 1 year and 5 months since we started this process, but I didn't see an infertility dr until November. I don't have problems with due date since I will not find out a due date until I am 12 weeks. I have said this before, our babies are trying to get to us just as hard as we are trying to get to them. I'm sure mine is badgering God with, "is it my turn yet" How about now?!!" He will eventually get tired of listening to my baby and send him down to me!! I hope this helps. Tracey ↑
Thanks Tracey for the posting. I really do appreciate. Even though they told me 3 months ago about this mutation I am still really confused. Thats one of the reasons I made an appt with a dr that has seen women with this. I have written down all my questions. Do they need to check my homocystine levels? I did not see that as one of the tests they did. Does the high levels of homocystine go hand in hand? ↑
Can someone help me with a quick question. I have been taking baby aspirin daily per my nurses instructions. I am on CD3 of my period and today I am having really heavy bleeding with fairly large clots. Is that from the aspirin or from something else? This is my third full cycle since my miscarriage if that matters. ↑
