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| MTHFR and other clotting disorders - New Thread! |
Question: 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. ?
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| Answer: 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..... = |
| Answer: 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? = |
| Answer: Jessicab3, you should definitely be on extra folic acid. Most docs recommend 4mg daily. Good luck! Keep me updated! = |
| Answer: 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. = |
| Answer: 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..... = |
| Answer:
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!! = |
| Answer: 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. = |
| Answer: 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. = |
| Answer: 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. = |
| Answer: 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 =) = |
| Answer: 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. = |
| Answer: 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 = |
| Answer: 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). = |
| Answer: Hi Ladies! Does anyone have Factor V Leiden? I was just diagnosed w/ this, and I'm searching for others. = |
| Answer: 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? = |
| Answer: I'm not sure yet. I have my apt tomorrow to go over everything with my peri. I'll check in afterwards.
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| Answer: Hi beebee- I've got FVL (and MTHFR, and high anticardiolipins)- I'm happy to offer any info I can. = |
| Answer: Hey duckie! I was just going to mention you and hoped you would see this post :) = |
| Answer: How much B-6 and B-12 should we be taking? I am taking 4mg of Folic Acid. Thanks! =) = |
| Answer: 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. = |
| Answer: I am thinking like you cloud9climber. I would like to hear of some successful stories of ladies in their 30's with MTHFR. =) = |
| Answer: 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. = |
| Answer: 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. =( = |
| Answer: 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?
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| Answer: 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!!**+.+*+..+*+.. = |
| Answer: 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 = |
| Answer: 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 :) = |
| Answer: Oh, TrevorsMommy I forgot to ask what type of MTHFR are you? Heterozygous or homozygous (or compound heterozygous)? = |
| Answer: 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. = |
| Answer: 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? = |
| Answer: beebee, I only have the one and mine is only heterozygous (MTHFR), I think it is less likely to have multiple ones though. I read somewhere that 44% of women have MTHFR so it really may not be that problematic in the heterozygous (1 mutation) form, it is the double mutation or homozygous that is less prevalent and more problematic. = |
| Answer: Yeah its pretty uncommen to have more than one. About 6% have 2 mthfr mutations and only 2% have the Factor II mutation. So basically I'm a genetic freak =P with like a 0.1% chance of having the 3 I have.... So, BEEBEE & CLOUD9 were you ttcing this month? Dh and I have decided to start trying next month so we have a couple more weeks yet before my next cycle starts. = |
| Answer: Hi girls, I didn't visit for a week or so and come back to all the replies! Awesome! Trevorsmommy - so very sorry for your loss. I think I recognize you from the nest. Jessicab3 we weren't trying this month because my husband was out of town. I thought we *might* have a chance but our timing was off. I'm seeing a rheumatologist and a reproductive endocrinologist next week. I'll give a full report back. I'm still on all the vitamins and of course the elephant dose of folic acid. Should get AF within the next few days and hope to conceive in May! How are you doing? = |
| Answer: p.s. I'm a freak to jessica - I have 2 MTHFR mutations and ANA. Lucky me!! (note:sarcasm) = |
| Answer: Cloud9, lol, yeah us freaks need to stick together... I'm doing pretty good, looking forward to May too. Hopefully it will be a lucky month for the both of us : ) = |
| Answer: Hey Jessicab3! So my new RE appt. is on May 5th. I decided to go with a pretty well known doctor in Los Angeles. He got one of my friends pregnant (they just had twins) so I'm hoping he can help my next little one "stick". Third times the charm right? I go to the rheumatologist on April 30th. So I should have a plan of attack very soon. Should be O'ing around May 8th or so. Fingers crossed for both of us! = |
| Answer: Cloud9, sounds like a good plan. An RE is a great idea and I truely believe a good doctor can make all the difference.... BeeBee, how are you doing?.... Anyone else out there with a blood clotting disorder ttcing or currently pregnant? = |
| Answer: Hello everyone. I am new to this group but am hoping to find some guidance. We lost our first pregnancy in December 2007. It was a blighted ovum. We weren't trying to get pregnant so I was not on a prenatal at the time of conception or until I got the pos hpt. We planned our second pregnancy and found out in mid-March that we were pregnant. At 8 weeks I had major bleeding and fluid loss so we headed to the ER. For the first time, we saw our baby and the heartbeat. We were expecting the worst and were so blessed to see this. Unfortunately, the baby was 2 weeks behind in growth size. 2 weeks later, a follow up ultrasound showed that the heartbeat had stopped and we now have two angels in heaven. The day of my second D&C (two weeks ago today) we received an email from my aunt. Apparently all of my aunts have MTHFR (4 are hetero and two are homozygous) and 5 of my 6 female cousins have MTHFR (3 hetero and 2 homozygous). I go to my OB next Thursday for a follow up from the D&C and will talk to him about this then. Obviously there is a good possibility that I have MTHFR but I am even more inclined to think so because of how my 2 miscarriages happened. Without any folic acid or vitamin boost on the first pregnancy, it was almost an immediate loss. When I was on the prenatal for almost 5 months, we were able to carry a baby a few weeks farther but then we lost that one too. I feel like it would explain a lot if I have MTHFR. I tend to get really intimidated and frazzled in a doctor's office so I am trying to come up with a list of questions and a list of things that I want him to check. Can those of you already dx with MTHFR help me in understanding what I should make sure he tests for and other things that might be useful for me to know? Thank you and to those of you who have angel babies, we are very blessed in a special way :) = |
| Answer: Wow, I'm so surprised all your aunts and cousins even know they have the gene. Why did they all get tested? When I told my family about the gene they were like huh? whats that? If I were you I would surf the net and find info on MTHFR, print it out, and bring it to your doc. That way you are armed with the info. As to the other testing. Just google "blood clotting disorders" and find a list of all the genes. Some of the ones I can think of off the top of my head are Factor II Prothrombin, Factor V Leiden (FVL), Protein C or S deficiencies. There are also antibodies from autoimmune disorders that can increase blood clotting factors as well such as Lupus that could be tested for. Most OBs though know what to test for, its just a matter of convincing them you need it and getting your insurance to cover it. Usually they don't offer the testing unless you have had 3 m/c's since that is when insurance will kick in. But since you obviously have a family history of MTHFR you should have no problem with insurance on that one. Another option is to have your homocysteine (hc) levels checked, but there is still a lot of contoversy over if the hc levels cause the m/c or the hc levels rise because of the m/c. So a lot of docs don't seem to bother with that one. The standard treatment for MTHFR is extra B vitamins (5mg folic acid, 100mg B6, 1000mcg B12) and a baby aspirin. In some cases of repeated m/c's or if the MTHFR gene is accompanied by other genes then daily heparin (Lovenox) injections during the entire pregnancy is the next route. .... Well, I hope that helps you a little : ) ~Jessica = |
| Answer: My aunt was dx with MTHFR about 25 years ago. She had two m/c before they figured it out. She has 5 sisters so they were all checked when they started having babies. As for my cousins- 3 of the 6 who have had babies are her daughters so they knew about it from their mom and got tested right away. The 4th and 5th cousin found out after having 1 m/c and my aunt told them about it and told them to get tested. I am not entirely sure why she waited for me to have TWO m/c before she decided to share this info with me. In my opinion, every woman in my family should know about this up front so they are tested before they lose several babies. Anyhow- I think I will do just what you suggest. Surf the net and print things out. I am nervous that my Dr. will be the type to not know about it and therefore try to disregard it. That is why I want to know exactly what I need to ask for so I am not relying on him to cover all the bases. I don't have a whole lot of faith in this guy as you can tell. If I do test positive, I am going to get a referral to a hematologist and then try to find an OB who has experience with MTHFR and has a reptuation of treating it the way I want mine treated. = |
| Answer: Hey jessicab3! I went to see the rheumatologist yesterday and he said there are lots of women like us - some with full blown lupus that go on to have several healthy pregnancies. He took a ton of samples and I go back for all the results on May 8th. My RE appt is pushed to the 12th so that I can get all the blood work results from the Rheumatologist. Good news - both doctors know and have worked with each other before so that's great! I'll update here after my appt. on the 8th. Hope you're well!
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| Answer: htf, so sorry for your losses. Now that you know - you can do something about it. It feels really good to take charge of your health. Makes me feel proactive. Hope everything works out for you! Keep us updated! = |
| Answer: p.s. I would go straight to a reproductive endocrinologist. Good luck! = |
| Answer: Cloud9 thanks for checking in, I'm glad you had a good appt. I'm doing good here, waiting for af which should be here this weekend and then we will be officially ttcing. If you would like to join a ttc support group I have one going at cafemom, specifically for ladies who are ttcing after a loss. Just find me at cafemom if you are interested, I have the same screenname there (Jessicab3) htf, I agree with cloud9 if you aren't happy with your doc's answers at your next appt. seek out and find a new doc right away. The right doc can make all the difference. = |
| Answer: Thank you for your advice. I go next Thursday to my OB and will request all the tests. I am not sure how long it will take to get the results but I hope to have some answers in the next few weeks. Not knowing has been hard so we are really ready to get the tests and start moving forward. We'd love to try again later this summer. = |
| Answer: Hi, hope you don't mind me joining you, I'm pretty confused here, I have 2 daughters and 2 angels, (one between my 2 girls at 21weeks and one 3 months ago at 5 weeks) I did all the tests a few years ago as my dad has bloodclotts and takes bloodthinners and so I was advised not to go on the pill without testing, so all the testing came back negative. Anyway my obgyn sent me to retest after this 2nd missed mc and today I met with the perinatologist - I am already 6 weeks pregnant. Anyway she went through the tests that I did 6 years ago and said that I'm neg for all the genetic ones but she'll retest for 2 that are not genetic as they could change, but she wants me to start on the lovenox now (I've been taking asprin up till now) as it will be another month before we get the ressults, then here's the bit that confuses me... she said that even if they come back neg she wants me to keep doing the lovenox injections until 6 weeks after labor and then all future pregnancies. Why would I need to do that if all tests show neg? = |
| Answer: Cubbie, lovenox is safe to use as a precaution...that is probably why she is having you do that and you are lucky to have a dr. who is willing to let you do something like this that could help if there are things the tests don't pick up, etc. Many doctors are just too conservative and won't prescribe the blood thinners yet you could be borderline on something and it makes the difference betweeen life and death for a tiny embryo. Good luck to you!!! = |
| Answer: Jessicab3 thanks so much for the invite! is it TTC after a loss with 81 members? = |
| Answer: Cloud9, no it is a private group so you can only get to it if I tell you the URL. We only have like 13 or 14 members which is really nice cause it makes it more personal. Do a mom search and find me (Jessicab3) or let me know your screenname and I will find you. Then I can message you with the URL link. =) Jessica = |
| Answer: cubbie, Its sounds like you found the right doc. I agree with Stefkay there really isn't a reason to NOT try it, especially since you do have a familial history. Good luck on your pregnancy. = |
| Answer: thanks for your replies - and stefkay also thanks for replying to my post on the first trimester board! Ok one more question, i read on the lovenox site that it's a risk to get an epidural while being treated by lovenox, has anyone heared about that, i can't imagine going through labor without one. = |
| Answer: also my original post was meant to say that i lost my 2nd angel at 15 weeks not 5 = |
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cubbie, I'm so very sorry for your losses. I hope you get some answers soon! = |
| Answer: cubbie, most docs will switch you to heparin around 36wks so you can still do an epidural when you go into labor. I've heard the needles are bigger so not very fun. Some docs will also schedule an inducement and just take you off Lovenox the day before that way you don't have to go the heparin route. = |
| Answer: Hey all, I just got back from my rheumatologist. Okay, good news first. I don't have an autoimmune disease!!! No lupus, hepatitis, sjogrens, etc. THANK YOU GOD/UNIVERSE! Bad news - the ANA and MTHFR are confirmed. The ANA (Antinuclear Antibodies) keep my body slightly inflamed all the time. Really low grade - I have no pain whatsoever but it can cause a m/c. As soon as I get my next BFP, I'll be put on 20 mg of prednisone throughout the 1st trimester. For the MTHFR (blood clotting disorder), I'll have to be put on lovenox for the entire pregnancy (most likely 2 injections a day given in the belly or thigh - nurses have promised me that it is a small needle. Yikes!). The GREAT news is that I've figured all of this out now and feel that I will have a healthy pregnancy hopefully some time in the near future. Next step... I see my RE for the first time this Monday armed with all this info. Thanks for reading :) = |
| Answer: I went for my follow up appt with my OB today after my miscarriage and D&C three weeks ago. Nothing abnormal showed up in the pathology so he agreed to test me for MTHFR. He did a complete thrombophilia panel so we are checking for lots of other things. What I didn't like was how he responded to me when I asked about MTHFR. He said it is a very "weak" factor for causing miscarriages and he said it really isn't something he would be worried about. I have done A LOT of reading and was prepared for my doctor to be on this side of the fence but I really hoped he would be way more proactive and willing to treat it aggressively. He said that if I do have MTHFR, the only things he would do is say take more folic acid and take baby asprin. After reading just about everything I can get my hands on about this I am pretty sure I will want more than just that. He did say he would also suggest doing progesterone suppositories for the first trimester during the next pregnancy. I have to wait 5-7 days to get the blood tests back but hopefully we can start making a real game plan as it were in the near future. I am ready to endure anything in the world to have a healthy pregnancy and baby. = |
| Answer: htf, it sounds like your doctor takes a stance that most doctors take, but it is good that he is willing to do the progesterone! You could work on him about the lovenox (as for a prophylactic dose of 40mg per day as a "precaution" -- that is what i am on) and if he won't budge there are other doctors, although I know what a pain that process is. The last doc I went to who I love was a nearly 4 hour drive from my home and I had to do that once every two weeks through the first trimester but it was worth it. CLOUDCLIMBER, Congrats on the diagnosis!!!!! I know that sounds weird, but I know I just wanted something concrete that could be treated and it looks like you got it :) My dr. said that prednisone was our next step if I were to have lost this pregnancy because I showed inflammation in my d&c path reports. That's nothing concrete, but he never tested my ANAs either. He explained that he didn't feel that prednisone was necessary so for him the risks outweighed the benefits. Really it was interesting how he explained there are hundreds of things that can be diagnosed, but there are relatively few treatments that cover the range. Progesterone, vitamins, folic, aspirin, lovenox or heparin and prednisone. Beyond that are more experimental things like IVIG and whanot. It sounds like you are on your way. = |
| Answer: Thanks stefkay! Yeah, I feel better knowing that there is something I can do to help my next pregnancy. I'll feel a TON better after meeting with the RE on Monday. I'm 4dpo right now so I'm praying for a BFP this month! Thanks again for the words of encouragement! I appreciate it! :) = |
| Answer: Cloud9, yay! I'm glad you got such good answers today. Wow you have a great team of doctors on your side, I'm so happy for you. I think they checked my APA levels too but I'm going to double check that. While I was in the hospital my inflamation numbers were really high, that has always worried me. They thought it was signs of infection but nothing ever showed up on the gram stain tests. Anyways it has made me think about the prednisone which I have heard of before but didn't know what it was actually used for. So thank you for that, more research for me to do, lol. I've been thinking about you, here's some baby dust*+.+*+.+*+.+*+.+*+. = |
| Answer: Oh by the way I am on cd5, my first month ttc, so wish me luck =D = |
| Answer: Thanks jessicab3 :) thanks for the baby dust. I'm 5dpo but don't have sore boobs so doubt that I'm pregnant this month. Oh, well. Have to keep trying right? I'll post after I visit the RE. Should be interesting. You're CD5 huh? Should be close to sex week for you! Have fun and I hope you make a healthy baby!!!
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| Answer: I just posted this on the nest too! First, it was a really good appointment. I'm way more optimistic now even more than I was before. My doctor was great - nice, answered all my questions, triple checked all my lab worked, etc. I even got the "so where are you from?" while he was inserting the wand up my hoo ha for the ultrasound. Most interesting thing was that I never had a blighted ovum as I thought. There is clearly a yolk sac in my November ultrasound pics. So it was an early m/c not a b.o. I was interested to find that my doc doesn't consider a chemical pregnancy a m/c. Not sure how I feel about this but I'm gonna go with it. Looks like he agrees with my rheumatologist and will most likely put me on a low dose of prednisone in conjunction with the lovenox (blood thinner) when I get my next BFP. So with all the blood work I've had done, my only issues are the ANA and the MTHFR.
I'm going to do the FSH test to see how mature (okay, how damn old) my eggs are at the end of the month. He said that this can differ greatly in women and that some women in there 20's have a maturation of eggs equal to someone much older. I never knew that my eggs could have their own age. I do that test on the 3rd day of my next AF. Fingers crossed that I have some young a$$ eggies. He wants me to do the HSG but after the "great" ultrasound and the fact that I've gotten pregnant 2 times in the 5 months we were trying, I'm not sure this test is really needed. Still undecided about that one. We did the ultrasound and he pointed out all the eggs on both sides of my ovaries and said "there is a lot of them, that's great". And there was no septum in my uterus or from what he could tell, no fibroids or blockages. All was well in the land of my uterus. My genetic karotyping came back excellent. I'm not a carrier for any genetic abnormality. *enter HUGE sigh of relief here* So, what's next... I go for the FSH in a couple of weeks or so and he wants us to try 2 more cycles on our own with perfectly timed intercourse. After that, we will go to the clomid (pill form) and a IUI. Also, he would like DH to have the genetic karotyping done as well.
I asked him if he thought our m/c and chemical pregnancy could just be crappy luck and he said "yep, absolutely" and continued "you're getting pregnant pretty easily and that is more than half the battle. The good news is that you are being really proactive about everything." He was pretty confident that I will have a healthy pregnancy. We he asked about how many kids we would like to have I said 3 but we probably don't have time and he said "you still have time for 3" which made me feel better because I turn 37 on Friday. Thanks for reading if you made it this far. I hope it helps someone on their was to see a RE. = |
| Answer: Hi girls! Just something I was thinking of when reading that I can't remember if I mentioned before...the specialist I saw this pregnancy had done extensive study on progesterone and said that it also acts as a natural immunosuppressant so high doses of it (300 to 400mg per day) can also help if you have suspected immune issues, but if nothingis showing in blood work. I really suspected this a lot with me. ALSO, he noted that often women having several losses like us early on all tend to get pregnant VERY easily and that was totally the case for us as I got pregnant about each time we tried in the first month or two. Basically if you get pregnant very easily you can kind of see how statistically you might have more losses overall. Just made sense in that it bad luck could have been part of mine as well. It's all more a combination of things I think....just interesting info. = |
| Answer: oops! I meant "on their WAY to see a RE"!!! = |
| Answer: yeah, all 3 of my docs seem to think that we just gotta keep trying and eventually we'll have a baby. So what you said stefkay makes sense. Interesting. = |
| Answer: Hi Cloud9 sounds like you are rocking and rolling your way to a healthy pregnancy. I'm so excited for you and greatful you are getting such good care. Where are you in your cycle now? I'm on cd13, no + opk yet but I'm getting signs so hopefully it will be soon. =) = |
| Answer: Hey jessica, thanks for your kind words - I appreciate it. I'm 12dpo and not pregnant. Needless to say, I'm bumming. Today is my birthday so I was hoping to get a BFP. That would be some present huh? I just posted on the nest that I'm just feeling old. 37!! Sheesh. RE thinks I can still have 3 kids but we'll see. Having a tough few days. I hope to snap out of it soon. Onward and forward right?? Next step is to have my FSH tested on CD3. I hope I at least have young eggs! I hope you get a peak on your OPK soon - have fun with sex week. I hope you get knocked up!!! = |
| Answer: jessicab3, are you charting? = |
| Answer: No I didn't chart this month but maybe I will next month cause I now officially hate opks, lol. I never did get a + but I'm sure I O'd last weekend I had lots of other signs to confirm it. So I am now in the dreaded 2WW but we will still BD every other day just in case. Cloud9 how are you? Are you near cd3 yet for your testing? Vjeana do have a blood clotting disorder? Are you ttcing? BABY DUST*+..+**+.+*++... = |
| Answer: ok cool. i saw your post on the twin myths and stuff, are you trying for twins or just bored and did research.. lol = |
| Answer: So Jessica - are you pregnant this cycle?? Sure hope so! I went to have my FSH test & estrogen tests done on CD 3 and numbers were really good. FSH is 5.7 and Estrogen was 63. My RE said numbers look great. We'll try for the next couple months on our own with timed intercourse and if still not pregnant by August, I'll start clomid with IUI. My RE also suggested taking the baby aspirin now instead of waiting for my next BFP and I'll most likely be on the prednisone for the first trimester for the ANA and Lovenox for the entire pregnancy for the MTHFR. What's the latest on you?? = |
| Answer: Cloud9, don't know yet. I'm only about 6dpo today so its still too early. I may test tomorrow, just for the hell of it. It's our 10th anniversary tomorrow and my ds's 6th Birthday so it would be neat to get to celebrate one more thing, lol. I will let you know. ; ) = |
| Answer: Oh and congrats on your numbers, best of luck this cycle. I'm taking baby aspirin too, I did notice some midcycle spotting which I've never had before, so I'm thinking it was the ba. But I guess its a good fertility sign when its near O so nothing to worry about. BABY DUST!**+.+*+.+*+.. = |
| Answer: good luck jessica and happy anniversary! = |
| Answer: Thank you hun. Its 11dpo today and a BFN. It could still be early but I am not optimistic. Already having PMS signs, lol. How are you doing? = |
| Answer: I'm sorry Jessica - that sucks. Getting a BFN last month was really hard on me. This months cycle is strange. I'm CD 10 and usually get a high around now but so far I still have a LOW with my CBEFM. I have a feeling that all this B6 that is in the Folgard vitamin might be screwing with my cycle a little bit. So I'm just waiting to ovulate. Would love to get a BFP this month and surprise DH on his birthday. I'm feeling okay I guess just anxious ya know? Thanks for asking. Have a good weekend - it's almost here! = |
| Answer: Here's my background: In march My daughter was diagnosed at 19 weeks with anencephaly. I was induced at 20 weeks. I requested the MTHFR test after speaking to a genetic counselor. I'm a compound heterozygos (G677T and A1298C). I'm supposed to wait at least three more months, i'm going to talk to the dr. on tues. this forum has been so informative and I'm hopeful that i'll have a healthy baby in the future! = |
| Answer: Belle, sorry for you loss hun. Definately start taking that folic acid now along with B6 and B12. I just buy mine at Walgreens but there are some scipts out there that you can get too. Cloud9, any change on your CBFM? I know B6 can lengthen your LP so maybe its lengthening your entire cycle?? As for me I am 14dpo, still BFN and still getting signs AF is coming. I predict she will be here on Sunday right on schedule. =( = |
| Answer: Jessica, Sorry that AF is on her way to you. I hope you get a BFP next month! BELLE, I'm so very sorry for your loss. Anencephaly is tragic but you'll have a healthy baby in the future. I'm also compound heterozygos (G677T and A1298C). Ask your doctor for a prescription of Folgard. It's a combo pill with 2.2mg of folic acid, 25mg of B6 and also has B12 (not sure of the amount). I also take another 2mg of folic acid a day in addition to the folgard. Our poor little babies just couldn't develop properly without this vital nutrients. Mine stopped growing at 7 weeks. Again, so very sorry for your loss. Hang in there!
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| Answer: jessica, keep me updated. I'm ovulating now and I'm chock full o' vitamins so keeping my fingers crossed. This month I'm using pre-seed and trying the instead cups to help keep all the spermies up there! I'll also be eating the pineapple core to help with implantation starting on 1dpo. Keep in touch! = |
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