new here...a little freaked MTHFR

roboat93

Hi Everyone,

I'm new to high risk...I'm sitting at just over 12 weeks pregnant and this week I had a marathon of baby appointments with my midwife and my high risk doc.  Initially, I was high risk for a significant family history including lots of miscarriages, a placental abruption, and 3 preemies.  Everything looked perfectly  normal for me personally, but my midwife had a hunch that there was a clotting issue based on the aforementioned history.  They ran a whole battery of tests and guess what, I have the MTHFR gene mutation---and I'm homozygous.  This is my first child and I am very lucky that they caught it early, but I'm totally freaked out.  I wasn't prescribed lovenox, but I have to take aspirin and a special PNV...I'm happy to take whatever keeps my child healthy, happy, and well, in my womb, but my DH is a nurse and he has me completely freaked about what COULD happen.  What do you all know about this if anything?  The information I've looked up seems a bit....well, inconclusive...

monica92603

#1  tell your H to shut up and stop scaring you.  ANYTHING can happen at ANY time, MTHFR or not, you can't obsess over it.

#2 do not get freaked out by my ticker.  We did not lose our baby at 41w b/c of MTHFR.

#3 stay off google, it's the devil.  There is too much about MTHFR that IS inconclusive and debatable and treatment is controversial.  If you look long enough, you'll find bad news for everything on google.

I'm hetero C677T and was on baby aspirin and 1mg folic acid (are you on folgard?) for my own piece of mind.  My dr's didn't think it was totally necessary since my homocysteine levels were normal.  You should have this bloodwork done as well.  It "seems" that if your levels are normal, you're at much less risk.  If they aren't, this is when you'd likely go on lovenox/heparin shots.  Also, some doctors say if you only have the MTHFR mutation and no other clotting issues, you're much less risk. 

There are tons of girls on these boards who have success stories w/ this mutation (both hetero and homo).  I think it's important to find a high risk dr (MFM specialist or perinatologist) so you can be monitored closely.  

There are so many differing opinions out there, the most recent being that they are going to remove MTHFR from the blood clotting panel for RPL (recurrent pg loss) b/c of either the inconclusiveness or they're just saying it does not cause m/c (I can't remember exactly).  Just keep following the protocol given to you by your dr, meet w/ a high risk dr and ask them as many questions as you need to to be satisfied and feel comfortable. 

roboat93

hi thanks for your answers.  i was already taking extra folic acid a year before we planned to conceive because my DH has a rare neural tube defect and of course no one knows if it is genetic or congenital---so some would say i was inadvertently protecting myself.  my homocysteine levels were actually low---according to the high risk doc probably because of this.  since i have no clotting issues in the past, she thinks everything will likely be fine, but i'm worried because both of my sisters have had issues during pregnancy and it is likely that this is why.  the frustrating thing is that like you said, they can't conclusively tell me anything---and in fact admitted they're not really sure what to do because the issue is new and the way MTHFR interacts long term is unknown.  i don't like lackluster answers like that!!!

E&RMommy

ACOG and ASRM not longer consider MTHFR (even homozygous mutations) as reasons for pregnancy losses.  As of this year they no longer recommend screening for it.  That will hopefully make you feel a little bit better.

I have heterzygous MTHFR, Hx of three losses and took baby aspirin my entire pregnancy.

ETA: I also took 4 mg folic acid daily.

Good luck!

sweetpea18

E&RMommy:

ACOG and ASRM not longer consider MTHFR (even homozygous mutations) as reasons for pregnancy losses.  As of this year they no longer recommend screening for it.  That will hopefully make you feel a little bit better.

I have heterzygous MTHFR, Hx of three losses and took baby aspirin my entire pregnancy.

ETA: I also took 4 mg folic acid daily.

Good luck!

This.  The study was just published this summer, ask your ob for a copy. 

The only reason I'm being treated for it during pregnancy is because I have a history of clotting.  I'm on lovenox and baby aspirin, along with folgard.  Had I not had a clot while pregnant with dd, I would just be on the folgard and aspirin (my hematologist has me take the aspirin whether I'm pregnant or not)

If your homocystine levels are normal, I wouldn't worry.  Out of all of the clotting disorders, mthfr is the least worrisome (its really just a vitamin defiency!)

GoBadgers

As a genetic counselor I get so frustrated when anyone even orders the genetic studies on MTHFR... get a they should just do the homocysteine instead...  And not all MFM/Perinatologists are created equal either... esp not all OBs keeping up on this literature... keep that in mind....

GoBadgers

One more thing... It would be interesting to have one of your fam members who has had symptoms have a thrombophilia workup... if there risks are explained by something you dont have that is good.. if there workup is normal... your fam hx is still important as you stated...