MTHFR And Other Clotting Disorders New Thread

316 Replies
beebee4mee - April 16

I'm not sure yet. I have my apt tomorrow to go over everything with my peri. I'll check in afterwards.


duckiec - April 17

Hi beebee- I've got FVL (and MTHFR, and high anticardiolipins)- I'm happy to offer any info I can.


stefkay - April 17

Hey duckie! I was just going to mention you and hoped you would see this post :)


TrevorsMommy - April 17

How much B-6 and B-12 should we be taking? I am taking 4mg of Folic Acid. Thanks! =)


TrevorsMommy - April 17

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.


TrevorsMommy - April 17

I am thinking like you cloud9climber. I would like to hear of some successful stories of ladies in their 30's with MTHFR. =)


Jessicab3 - April 17

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 pa__sing 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.


TrevorsMommy - April 18

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. =(


beebee4mee - April 18

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?


Jessicab3 - April 18

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!!**+.+*+..+*+..


TrevorsMommy - April 19

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


stefkay - April 21

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 pa__sing at a time like that? Did you go to deliver and he pa__sed 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. sounds like you got the same info as mee too! It sounds all good :)


stefkay - April 21

Oh, TrevorsMommy I forgot to ask what type of MTHFR are you? Heterozygous or homozygous (or compound heterozygous)?


Jessicab3 - April 21

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.


beebee4mee - April 21

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?


stefkay - April 21

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.



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