[TnPhotoMama81]

I got half of my results back from the blood work taken at my doctor’s office the day we found out the baby did not have a heartbeat. They checked for clotting disorders but could only do half of the blood work because my HCG has to go down for the other half. Our appt at a high risk (genetics counseling) place in Knoxville is this Thursday so we may have more answers in a few weeks.

Below is a list of the three mutations I tested positive for. From what was explained, you can either be heterozygous or homozygous. Heterozygous means I only had one of my genes that carried the mutation, and then Homozygous means that both genes contained the mutation (which is worse).

****
1. MTHFR (A1298C MUTATION) – The way the doctor explained it, this is the better one of the two you can have. The other is C677T Mutation but I was negative for that. I was Heterozygous for this one.

2. PLASMINOGEN ACTIVATOR INHIBITOR-1 4G/5G (or PAI-1) – I tested positive for two copies of the 4G variant (Homozygous).

3. FACTOR V (LEIDEN) MUTATION – Heterozygous for the Factor V Leiden R506Q Mutation.

****
A lot of this doesn’t make a whole lot of sense to me at this point. I have heard of the MTHFR and Factor V gene mutations but not the other one. I will obviously have to do some reading.

If I only tested positive for the MTHFR mutation I could have just taken a baby asprin to thin my blood to prevent clots. However because it is paired with the other two mutations, Factor V being a more serious one, I have to do baby asprin and Lovenox injections once daily when I do become pregnant again.

I also asked the doctor if something happens right around 7 weeks (since my losses have been at 7w5d and 7w6d) that the clotting would be a problem. She said that the placenta starts to try and take over at this point (and fully takes over by 10/12 weeks) and a blood clot could prevent everything from “hooking up” the way it is supposed to.

They also were not able to get any results from the embryo. They tried growing the cells but for some reason could not get them to grow.

I also got a prescription for Wellbutrin and she also gave me xanax (for anxiety) but I am not too sure about taking that one. I am going to start on the Wellbutrin and see if it helps me.

I also asked my doctor about the soy isoflavones thing and she has no problems with me trying it. I didn’t tell her that we tried it with this last one, I just wanted to see her thoughts on it. She has told me about herbal type remedies in the past so I didn’t think she would have a problem with me taking supplements to get pregnant. She didn’t see a problem with it as long as it didn’t start making me have wacky periods or I started bleeding more than I normally do.

Anyway, I think that is about it. I was going to ask you guys though if anyone else has been diagnosed with any of these blood clotting mutations before? If so, what was the outcome after being on baby asprin and/or lovenox injections?

My doctor said they had a high success rate with it, so I am hoping that the only problem we are having right now. It sucks because I hate needles. My husband is going to have to be the one to inject me. I don’t think I could stand to do it!

Thanks for listening

[Shadeauxe]

Is it reassuring now that you have some answers? It seems like it would be, but I don't want to assume anything.

[TnPhotoMama81]

Yes it definitely makes me feel better about things going forward!

[Shadeauxe]

Awesome! Good luck!

[ohnicole]

Melissa, I'm so glad you had the testing done and that they found something treatable. I don't have any of the clotting disorders you have, but I have a different one (prothrombin/Factor II mutation). From what I've read, treatment with baby aspirin and Lovenox with close monitoring is pretty successful.

The shots are a little scary I'm starting mine tonight, but hopefully they won't be too bad. I had to do some self-injections of fertility meds and it really didn't hurt too much.

I'm so glad that you can move forward with a little more confidence

[Butterflywings02]

Hey Melissa,

I'm just lurking, we were actually in the Nov 10 ddc together but I also had a miscarriage then too. I wanted to let you know that, I got pregnant again this past July, we had a rough start with progesterone levels and getting a strong heartbeat also bleeding and then in Jan at 28weeks I was admitted to the hospital because they found out I had blood clots in my lungs, well come to find out I also have the MTHFR. I don't remember which one but Dr's said it's a miracle I have even been able to carry a baby to term before now. I never knew I even had it. . I am now on Lovenox injections twice aday. I was nervous to give them to myself as well, but I couldnt let DH because I needed control of that needle lol. The needle it self isn't bad, it's the medicine that burns like crap. I am now 35 weeks 1 day. They will be inducing early 37/38 because you need to be off the lovenox 24 hrs prior to delivery for higher risk of bleeding and plus if not you wont be allowed an epidural if wanted. Then when I deliver I will be put on an oral blood thinner and lovenox untill the oral blood thinner is at a good level, then I will be taken off lovenox and will continue the oral one for 6 months. Also I would talk to your dr about taking extra folic acid because somehow it does effect your body producing folic acid. I take 3 extra a night on top of my prenatal. I am not on a baby asprin, but said they may start me on one after im done taking the oral blood thinner.

I hope all this makes sense, I tend to ramble lol. If you have any questions please feel free to ask or you can PM me.

Good luck sweetie and I really pray you get your VERY sticky bean soon!!!

[Shadeauxe]

Ok, I have no idea what MTHFR stands for and I hope no one takes offense to this, but every time I read it, my brain turns it into "mother f**ker".

[Butterflywings02]

Originally Posted by Shadeauxe

Ok, I have no idea what MTHFR stands for and I hope no one takes offense to this, but every time I read it, my brain turns it into "mother f**ker".

LOL So does mine and it feels like a "mother f**ker" too lol....


The actual word is VERY long..... Methylenetetrahydrofolate reductase (MTHFR) Thus the reason the probably abbreviated it. I tried reading about it and to me it's really confusing.

[Erin84]

I don't have any knowledge/experience of/with anything you just mentioned, so no help there. I just wanted to say that I'm so glad you said it's helpful, and I can only imagine how much it would be! What a wonderful thing knowledge can be. Now hopefully you can rest a little bit easier next time around, which better happen the same time as my "next time around" !!

[MeganMomof5]

I'm so glad you got some answers!!! I too tested positive for 2 gene mutations of MTHFR...I've been on baby aspirin since ovulation, and will be switched over to lovenox soon...I hope now that you have answers, you'll get your BFP soon, and will be able to stay pregnant ...Oh and i'm also taking 4000 mcg of folic acid, it's very important to take extra folic acid with MTHFR...Oh and I just started extra b6 and b12...Good luck to you!!!

[*SamF*]

Glad you got answers! I don't have any experience with the clotting disorders either.
Very happy it's something treatable!

[.:Shortcake:.]

I also have 2 of the genes but my doctor doesn't do the shots unless you have 3 of the genes. She will just have me on baby aspirin. I'm also on prescription pre-natal vitamins and extra folic acid. I really hope these findings help you get your BFP!

[StaceygirlPa]

I am no help to you. I am happy you are finding out some answers. Hopefully this will help you get your rainbow baby.

[Cait&AngelAbove]

I am glad you got some answers and I hope they get you on the right track for your bfp!!

[emsketch]

I have Factor V Leiden, I am heterozygous also.
I knew prior to getting pregnant as I had a blood clot in my leg and in both lungs. Due to the fact that I have clotted, I am on anticoagulants all of the time. Coumadin when not pregnant or TTC and Lovenox when pregnant or TTC.

I am currently on the Lovenox. I told my docs that since I had already switched over to the shots, I would prefer to stay on them and continue to TTC. Both my OB and my hematologist were ok with this.

The shots are not bad at all. In the begining of taking them with my pregnancy with Stella, I made DH give them to me. He hated doing it, but he knew that I hated the idea of giving myself a shot even more. One day I worked a different shift and I had to do it myself. I was blown away by how easy it was. I have to do two shots a day, many people only have to do one. They do hurt, but it is not the shot itself that hurts, it is the medicine. It burns like crazy for a few minutes afterwards. I also ice before my shots. It takes the sting out of the needle. Sometimes I bruise, sometimes I don't it just seems to depend on the day.

I had a very "normal", uneventful pregnancy with Stella. I was switched to heparin at 32 weeks.Heparin has a shorter half life than Lovenox and is therefore safer to be on if you should go into labor on your own. I was to be induced at 39 weeks, so that they could have better control of my whole situation (what meds were in me and whatnot). I ended up being induced at 37 weeks due to pre-e. I was on heparin for another 6 weeks and then back to my coumadin. Women who are not on anticoagulation therapy when not pregnant are normally kept on the injectables for 6 weeks post partum.

Sorry that this is so rambly. I hope it helps!

[TnPhotoMama81]

Thank you everyone!!!!!

Originally Posted by ohnicole

Melissa, I'm so glad you had the testing done and that they found something treatable. I don't have any of the clotting disorders you have, but I have a different one (prothrombin/Factor II mutation). From what I've read, treatment with baby aspirin and Lovenox with close monitoring is pretty successful.

Thank you Nicole. I am glad to hear that it is pretty successful! Good luck with your injections *hugs*

Originally Posted by Butterflywings02

Hey Melissa,

I'm just lurking, we were actually in the Nov 10 ddc together but I also had a miscarriage then too. I wanted to let you know that, I got pregnant again this past July, we had a rough start with progesterone levels and getting a strong heartbeat also bleeding and then in Jan at 28weeks I was admitted to the hospital because they found out I had blood clots in my lungs, well come to find out I also have the MTHFR. I don't remember which one but Dr's said it's a miracle I have even been able to carry a baby to term before now. I never knew I even had it. . I am now on Lovenox injections twice aday. I was nervous to give them to myself as well, but I couldnt let DH because I needed control of that needle lol. The needle it self isn't bad, it's the medicine that burns like crap. I am now 35 weeks 1 day. They will be inducing early 37/38 because you need to be off the lovenox 24 hrs prior to delivery for higher risk of bleeding and plus if not you wont be allowed an epidural if wanted. Then when I deliver I will be put on an oral blood thinner and lovenox untill the oral blood thinner is at a good level, then I will be taken off lovenox and will continue the oral one for 6 months. Also I would talk to your dr about taking extra folic acid because somehow it does effect your body producing folic acid. I take 3 extra a night on top of my prenatal. I am not on a baby asprin, but said they may start me on one after im done taking the oral blood thinner.

I hope all this makes sense, I tend to ramble lol. If you have any questions please feel free to ask or you can PM me.

Good luck sweetie and I really pray you get your VERY sticky bean soon!!!

Thank you so much for your experiences with all of this I appreciate it a lot. I do remember you from the Nov 10 DDC! I am glad that the injections are working for you. My doctor did mention weaning me off the Lovenox at the end and putting me on Heparin instead. I really hope this doesn't affect me trying for a VBAC.

I will definitely look into the extra folic acid. I might ask the genetics counselor on Thurs and if they don't have an an answer I will call my doctor. I do take a prenatal every day but not sure how much folic acid is in it. It is just the ones from Walmart.

Originally Posted by Shadeauxe

Ok, I have no idea what MTHFR stands for and I hope no one takes offense to this, but every time I read it, my brain turns it into "mother f**ker".

I think everyone reads it like that lol.

Originally Posted by Erin84

I don't have any knowledge/experience of/with anything you just mentioned, so no help there. I just wanted to say that I'm so glad you said it's helpful, and I can only imagine how much it would be! What a wonderful thing knowledge can be. Now hopefully you can rest a little bit easier next time around, which better happen the same time as my "next time around" !!

Thanks Erin and I hope we get to be pregnant together!

Originally Posted by MeganMomof5

I'm so glad you got some answers!!! I too tested positive for 2 gene mutations of MTHFR...I've been on baby aspirin since ovulation, and will be switched over to lovenox soon...I hope now that you have answers, you'll get your BFP soon, and will be able to stay pregnant ...Oh and i'm also taking 4000 mcg of folic acid, it's very important to take extra folic acid with MTHFR...Oh and I just started extra b6 and b12...Good luck to you!!!

Thank you for sharing your experiences! I will definitely look into the extra folic acid. I do have some left over B complex vitamins...I wonder if I could take those....

Originally Posted by .:Shortcake:.

I also have 2 of the genes but my doctor doesn't do the shots unless you have 3 of the genes. She will just have me on baby aspirin. I'm also on prescription pre-natal vitamins and extra folic acid. I really hope these findings help you get your BFP!

Thanks Katie! I hope so too

[TnPhotoMama81]

Originally Posted by emsketch

I have Factor V Leiden, I am heterozygous also.
I knew prior to getting pregnant as I had a blood clot in my leg and in both lungs. Due to the fact that I have clotted, I am on anticoagulants all of the time. Coumadin when not pregnant or TTC and Lovenox when pregnant or TTC.

I am currently on the Lovenox. I told my docs that since I had already switched over to the shots, I would prefer to stay on them and continue to TTC. Both my OB and my hematologist were ok with this.

The shots are not bad at all. In the begining of taking them with my pregnancy with Stella, I made DH give them to me. He hated doing it, but he knew that I hated the idea of giving myself a shot even more. One day I worked a different shift and I had to do it myself. I was blown away by how easy it was. I have to do two shots a day, many people only have to do one. They do hurt, but it is not the shot itself that hurts, it is the medicine. It burns like crazy for a few minutes afterwards. I also ice before my shots. It takes the sting out of the needle. Sometimes I bruise, sometimes I don't it just seems to depend on the day.

I had a very "normal", uneventful pregnancy with Stella. I was switched to heparin at 32 weeks.Heparin has a shorter half life than Lovenox and is therefore safer to be on if you should go into labor on your own. I was to be induced at 39 weeks, so that they could have better control of my whole situation (what meds were in me and whatnot). I ended up being induced at 37 weeks due to pre-e. I was on heparin for another 6 weeks and then back to my coumadin. Women who are not on anticoagulation therapy when not pregnant are normally kept on the injectables for 6 weeks post partum.

Sorry that this is so rambly. I hope it helps!

It does help and it is a lot of good information! I appreciate you taking the time to tell me your experiences with it. I am glad that it helped you in your pregnancy with Stella. Really hoping this is what gives us our rainbow baby!

[Joanna1127]

so glad to hear that you are getting some answers! sending you lots of ++++ vibes!

[onedaysoon]

I'm so glad you got some answers Melissa.

I know 2 people who have Leiden Factor V (my cousin and my brother's ex, who I'm good friends with). They have both had successful pregnancies on Lovenox (once daily). My cousin is back on it being pregnant with twins. With her first pregnancy she had to have her husband do them cause she just couldn't do it she said (although she's a nurse on a surgical floor and gives the exact shot many times a day lol). But this time around she's doing it herself. Like the PP said, she says it's not bad, but burns a little, but you get used to it.

I pray all this leads to your rainbow baby.

[Twoboysmaybemore]

I have MTHFR and PAI-1. When the RE gave me my results I had heard of the MTHFR (because of message boards and always giggled at it thinking it does look like M-Fer) but when he said the long version of PAI-1 I looked at him like Uhhhhh what is that?! He told me it wasn't a big deal and not do anything crazy and go googling it. Of course I did but honestly, it read like a bunch of gibberish.

I take prescription Folic Acid, BA, and tried Lovenox on one pregnancy. It didn't work for me but the good news was, while I initially thought I would have to have my husband give it to me, our schedules just didn't allow it. I even have a phobia of needles and after just biting the bullet and doing the first one, it really wasn't a huge deal. Like the ladies have said, it is the burn afterward that stinks. I bruised a lot too.

Good luck to you. It is a great feeling to have a plan for the next one!