MTHFR questions (previous pg ment)

[Avamae'smom]

My RE just shared today that I do have MTHFR. No other specifics. How could I have this and have had 2 previous successful, uncomplicated pregnancies?? Then all of a sudden, it rears its ugly head and causes the death of my dd during second trimester??

Can homocysteine levels drop after starting baby aspirin?

I had plasma levels done last week after staring 800 mg folic acid daily plus 81 mg baby aspirin/day and they were excellent at 3.4!! (I was on this new regimine 1 week before these levels were taken...could the levels have been higher before starting these??)

RE doesn't feel I need to be on any meds at this point while ttc except extra folate/baby aspirin. He is working with a hematologist who is attending a conference this week specifically dealing with MTHFR and pregnancy treatments. They will tell me differently if they discover something new.

Any input?? Thanks!!!!

Wendy

[BC-Tabithalyn]

here is a previous thread link for you to read at regarding MTHFR...

Yes, there are girls here who have also been given this diagnosis...

http://www3.fertilethoughts.com/for...threadid=257758

as there are some good explanations in there..
basically clotting problem and needs nutritional support with Folgard.

You need to understand that immune issues often develop after a live birth happens...it is probably one of the main times that women are found with antibodies/conditions b/c the docs can't just send them away as "unexplained" if they already have live children!
I wishyou much success in TTC efforts.
Ally

[BC-Tabithalyn]

apparently they haven't yet uploaded that portion of the data base and you won't get the thread... but I know there are others here who will help you with this one...
Ally

[Josie1021]

Wendy - I am currently waiting for the test results to see if I also have this gene. Meanwhile have started 5mg daily folic acid. Since I already know I have the FVL gene, my RE feels that increased folic acid plus the low dose aspirin is the way to go.

I have a haematology appt soon to decide whether I should do a form of heparin during IVF and pregnancy. I have met other women with MTHFR who use heparin during pregnancy. Do you have one or two copies of the gene?

Josie

[lynnalan]

Hello Wendy - so sorry to hear of your loss.

Regarding the MTHFR gene - it is important for you to know if you are homozygous (meaning that you have two copies of the gene) or heterozygous (only one copy).

IF you are homozygous then you should be taking folgard 2x/day or you can do it over the counter - essentially means 5 mg folic acid (I think the highest OTC dose you can get is 1 mg), 1000 mcg B12, 50 mg B6 and a low dose asa (81 mg) daily. If you only have one copy of the gene (heterozygous) then you cut everything in half with the exception of the low dose asa.

You will need to do this for the rest of your life - not just while you are trying to concieve. Especially important if you are homozygous - as it is associated with greater risk for other conditions related to thrombosis (blood clots).

I am hetero, have never been preg (at least not to my knowledge) and in addition to the regimen I described above I will be doing lovenox (low mlc wt heparin) prior to ER and throughout the tww.

Hope that helps. I'll be curious to know what your DR has found out at the recent conference.

Lots of luck to you,
Lynn

[samac]

Lynn

I was diagnosed with MTHFR back in 10/03 after my first miscarriage. I don't know if I am homozygous or heterozygous. All I know is I was told that I was positive, got one gene mutation from my mom and the other from my dad and that my case of it is minor. Does that mean anything to you?

Since then I have been taking 5mg of Folic Acid and a baby aspirin every day. I am now just beginning my 10th week of pregnancy with twins. Since I had the positive beta I have also been on Fragmin. Should I have also been taking B6 and B12? Is it too late? Are my babies at harms way because I haven't been taking that? I had my first OB appt. last week. She told me I could stop Fragmin, Folic Acid and Baby Aspirin at 13 weeks. I told her I was uncomfortable with this because of my diagnosis but also because my sister had a clot which caused her miscarriage at 21 weeks! Should I stay on these meds throughout my pregnancy? She is referring me to a hematologist for a second opinion. She did say if I remained on it he would switch me to Lovenox (he prefers that) and Heparin towards the end of the pregnancy. My DH is worried about me being on aspirin and a blood thinner at time of delivery? Is that safe?

Any information you can provide will help. Thank you.

Sarah

[slsb1]

Lynnalan-

I am curious if your Dr. told you that you would need to take the folgard for the rest of you life as a precautionary measure? My Dr. has told me and I have found research that indicates that if you are hetero (1 variant gene) then you do not need to take a supplement and you are not at an increased risk for high levels of homocysteine - therefore no increased risk for blood clotting.

However, during pregnancy the folgard, baby aspirin and heparin are reccommended.

I am just curious- it is disturbing to me to find Dr.'s that give such opposite advice. Who should we believe!

Thanks!

[Josie1021]

Sarah - most women with clotting disorders continue with the low molecular weight heparin throughout pregnancy and some continue for several weeks post partum. The LMWH is much lower risk for causing bleeding, but I think you can stop a day or so before delivery and be fine. Your doctor can advise you there.

As far as changing from Fragmin to Lovenox, they are both LMWH so essentially do the same thing. The extra folic acid helps to lower the homocysteine level in the blood that may cause clotting. Your babies will have had plenty of folic acid to prevent neural tube defects, but the vitamins B6 and B12 just allow your body to absorb the extra folic acid more efficiently.

Let us know how it goes with the haematologist.

Josie

[samac]

Thank you Josie. I am already 10 weeks pregnant and didn't take any extra B6 and B12. But I did take 5mg Folic Acid before and during pregnancy. Is that enough, alone without the B6 and B12, to prevent neural tube defects? I am worried I should have been taking that.

Sarah

[mvan]

Wendy,

I'm so sorry to hear of your loss. That is so sad.

I just found out I am homozygous MTHFR. I have also had 2 successful pg. (only through IVF). I've also had 2 m/c (1 before infertility treatments and 1 after infertility treatments and the only two natural pregnancies). For both of my successes I did have baby aspirin and the second one I had heparin for 8 weeks(for a borderline APA). For those two I had no knowledge that I tested positive for MTHFR. I just did a fasting homocysteine blood test but haven't found out the results yet. From what I understand the gene mutation has always been there, but that doesn't necessarily mean you always have an elevated homocysteine level. I'm scheduled for a FET at the end of April and the dr. still hasn't told me to start Folgard. I think she may be waiting to see if my homocysteine levels are elevated. I have been taking extra folic acid on my own. Sorry I'm not much help, but I will know more about my own situation within the next few days and I will try to keep you posted. It's still all confusing to me too.

Hope you get some answers soon.

Michelle