New Here! Anyone else have MTHFR?

pumpkinpie · #1 August 5th, 2008, 05:42 PM

Hi all! I'm new here and will be TTC in September (we are going on a trip and don't want to deal with the what if's while on vacation). Anyway, after two miscarriages I had blood work done and found out I have a blood clotting disorder - MTHFR. From the research I've done this is supposibly the mildest of them, but also there isn't a strong link between it and miscarriages - which is actually upsetting to me because if there were at least I'd have a STRONG reason as to why I miscarried...ya know? Anyway...just wondering if anyone else is in the same boat. I guess I'll have to start injections the day I find out I get pregant...which the when of that also seem controversial...

AMarie · #2 August 5th, 2008, 05:52 PM

Hi! I am new as well

I was involved in another online support board....still am kinda (being stalked..long story) ...Anyway, as a result, I know a good amount of women (over the years) who were diagnosed with MTHFR and went on to have successful pregnancies...These ladies would def say that the MTHFR was the culprit. They started their meds (I believe high does folic acid and Heparin (or the like) right when they found out they were pregnant...None of the women that I have come across over the years had any problems with their pregnancies as a result. This is not to say that the drugs don't come with risk, they do..Just that the women I know did not have any issues.

hth!

Marie

babyd28734 · #3 August 5th, 2008, 07:35 PM

Hi Im Dana and welcome to the board! my husband and i lost our third child on June 15th of this year @ 14 weeks along. my doc did blood work to see if it was caused by a blood clotting disorder and we will be finding out the results next tuesday at our appt woth her. I totally know what you mean that if that was the cause at least then you know and your not lefted wondering why it happened.
Keep your chin up! we are all here for you even if you need a shoulder to cry on.
Hugs

MrsPoe · #4 August 5th, 2008, 07:53 PM

Hi, welcome to this board the ladies here are great! I saw your post and just had to respond. I am homozygous mthfr. I also have a couple other clotting disorders. Were you told to take a low dose aspirin or extra folic acid? I took 81mg aspirin, 5mg of folic acid, along with my prenatal vitamin and once I got pregnant I started shots of lovenox. From my research after losing my dd at 27w5d I found out that a lot of women mc even early on due to clotting disorders. My hematologist told me that it wasn't the cause of early losses but he has found that a baby aspirin really reduces the chance of mc. I found that interesting. And from talking to other women I have found that it does really decrease that risk. I had 2mc's and one stillbirth before we got this answer though and I really believe it was the reason for my mc's as well.

Do you know if you have one abnormal gene or two? You might talk to your dr about it but taking an aspirin while ttc might be beneficial until you start taking the shots. It can't hurt anything.

I hope that you have a great vacation and get your bfp in Sept!

Bakin8th · #5 August 5th, 2008, 09:25 PM

I am so sorry for your loss. I was just tested for all that last month after loseing a 2nd baby at 17w pg( 5 m/c all together) I was neg so that was the last sort of resort to find out what happened.

Now I have read you need at least 2 sets of tests to determine results..is that true?

pumpkinpie · #6 August 6th, 2008, 04:03 AM

Thanks for all the replys! Mrs. Poe - congrats on your pregnancy! You look great! So I take it you have been taking the injections? How is that going? Do you get used to it I assume?

I don't know anything about getting two sets of tests done? I'm pretty sure if I remember correctly they tested me for other blood disorder as well..factor V Leiden and such...I only have the MTHFR - hetero I believe. I should really know this for sure - and I "think" one gene? again..I need to get my info.

Thanks again! I think I will start taking a aprin after O...hope to have news to share and get more involved!

BabyBird · #7 August 6th, 2008, 05:51 AM

I am heterozygous for MTHFR and I have yet to become pregnant since we found out so I am hoping the lovenox does the trick this time. I take Folgard in addition to my regular prenatal (you can get it OTC). Folgard has extra folic acid, b6 and b12. I also take baby aspirin but I stop when I start the lovenox. I start my lovenox at about 3 DPO or 5 days after my trigger shot. My RE wants me to be on the lovenox before implantation would occur because all my losses have been early. I would be nervous about starting it after I found out I was pg because I would worry that it could be too late.

pumpkinpie · #8 August 6th, 2008, 08:18 AM

Quote:

I am heterozygous for MTHFR and I have yet to become pregnant since we found out so I am hoping the lovenox does the trick this time. I take Folgard in addition to my regular prenatal (you can get it OTC). Folgard has extra folic acid, b6 and b12. I also take baby aspirin but I stop when I start the lovenox. I start my lovenox at about 3 DPO or 5 days after my trigger shot. My RE wants me to be on the lovenox before implantation would occur because all my losses have been early. I would be nervous about starting it after I found out I was pg because I would worry that it could be too late.[/b]

I'm so sorry for your losses April. We have a little in common - I too and 28 and we appear to have been diagnosed the same. I never thougth of taking the injections before a BFP. Although my first loss was at 5 weeks and the second at 7 weeks (saw a heartbeat at 6 weeks though..very sad.). I think I will definilty take the Folgard you speak of and aspirin. Thanks for the help!

MrsPoe · #9 August 6th, 2008, 09:38 AM

Quote:

Thanks for all the replys! Mrs. Poe - congrats on your pregnancy! You look great! So I take it you have been taking the injections? How is that going? Do you get used to it I assume?

I don't know anything about getting two sets of tests done? I'm pretty sure if I remember correctly they tested me for other blood disorder as well..factor V Leiden and such...I only have the MTHFR - hetero I believe. I should really know this for sure - and I "think" one gene? again..I need to get my info.

Thanks again! I think I will start taking a aprin after O...hope to have news to share and get more involved![/b]

Ahh thanks! Yes I started the shots around 4 weeks, just after the bfp. They are a little scary at first but after a couple weeks you will be a pro. It does leave some bruises, but the bruises don't really hurt. I learned that pushing the plunger slowly reduces the burning. Now it doesn't burn at all you must get used to it.

If its hetero then you have only one gene. And you wouldn't have to worry about taking the lovenox before you get your bfp if your taking BA. Were you sent to see a hematologist?

Just a heads up on some of the "problems" with lovenox. I have found that it will make you constipated so be sure to drink plenty of water, eat healthy, and try to eat your fiber. lol Also lovenox depletes your body of calcium, well so does pregnancy, so you will want to supplement calcium if your not a big milk drinker! That is the only problems I have had with lovenox. And so far so good.

Wee3monkeys · #10 August 6th, 2008, 11:46 AM

Hi! I'm so sorry to hear about your losses! Welcome to TTCAL!

I don't have MTHFR, I am heterozygous for Factor V Leiden. I don't know much about your disorder, to tell you the truth, but I wanted to post as another gal w/ a clotting disorder who was on blood thinners.

I had two losses years ago, then had my ds in 2001 w/out many problems, and recently had 2 more m/c. Then after a surgical procedure I developed a clot, and finally my doctor agreed to test me. Sure enough, I had a disorder. Luckily I only have one, and I'm hetero, but I still knew I'd be doing blood thinners. My doctor also assured me that it probably didn't have anything to do w/ my losses, ok doc sure, whatever you say. I had done the baby aspirin before and during the pregnancy of my second recent loss, and that alone wasn't enough evidently. I wanted to start the blood thinners right after O, like Babybird is doing; but my doctor refused. So I did the aspirin, and as soon as I got a BFP I started on Lovenox. I was still having some pain in my legs around my vericose veins where my previous clot had developed (I'm young, but I still have the stupid things), so they told me to keep taking the aspirin too; and amazingly enough it definitely has helped. So I do daily Lovenox and aspirin. It was scary at first, and still isn't any fun, but you do get used to it.

There are little tricks to make it not so bad, like Rhonda said. Make sure the injection site is completely dry of the alcohol you cleaned it w/, otherwise I notice it stings. Push the plunger slowly as Rhonda suggested, I usually count to 10 or 15 as I push, it lessens the stinging. Also I have noticed that if it is stinging, if I rotate the needle (turn it while it's still in there) most times the stinging stops as the medication is better distributed around the area instead of a build-up in one single pocket. I also leave it in after the plunger is fully de-pressed, as it allows the medication to disperse and it doesn't leak out or bleed when I remove the needle. Those are my tips, I'm sure there's more but those seem to work for me.

Good Luck, hun!! These things aren't the end of the world, and it's great that you know what is going on with your body now!! I hope you get your BFP in September!! If you have more questions, Rhonda is a wealth of information; and we're all here for each other. The ladies here are wonderful, again Welcome to TTCAL!!!!