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My Journey With MTHFR

Well...to start off I am 24 (25 in a couple weeks) and I have had 4 miscarriages.  My first was about 4 years ago I was 20 and not really ready to have children.  I was late on my cycle only by a couple days and I started immediately no pain or anything.  I was told I had a belighted ovulm.  DH and I started to try in 2007.  My June of 2008  I found out I was pregnant again.  It lasted all of a week from when I found out to when I miscarried.  I was late like a week but was normal for me b/c I was constantly having irregular cycles.  I went to the doctor because I was dizzy and lightheaded and wasn't feeling weel.  They diagnosed me with inner ear and I seriously think that's one reason I miscarried from the medicine.  I went back to the doctor b/c I blacked out at work and found out I was pregnant.  After that miscarriage I was devistated.  I would rather not know I was pregnant than know and lose it.

My third pregnacy was in January of 2008.  I found these AMAZING doctors and I absolutly loved them.  I felt like family.  Anyway, that pregnancy lasted till 8 weeks well the baby measured 6 weeks.  No heartbeat.  I was sick so they couldn't do a d&c to get the fetus out of me seeing how we had no clue how long the baby had been with no heartbeat.  I decided I would m/c on my own.  A week after that I started to miscarriage and was having horrible blood clots (size of softballs) (sorry TMI).  I was scheduled to have a d&c immediatly.  One of the hardest miscarriages that I really haven't gotten over.  Those doctors did a bunch of blood test and got the results.  All they said to me was I have a deficiency in b6 b12 and folate and needed progesterone (which I was already on).  Also I needed to take a baby aspirin a day.  No reason that I just needed to do those things.

My fourth pregancy happened on August 1st 2010 when I found out. I had to choose a different doctor b/c they moved away.  I set up an appointment and ended up miscarrying at 5 weeks on the 17th.  My heart shattered.  I went into the doctor two days after the pains and he checked and everything was normal my uterus looked great.  So, he requested the copy of everything from those other doctors and when I went to get the paperwork to take to him I looked through and seen all of the paperwork saying that I have two mutations (C677T and A1298C).  He told me had he known this I would have been seen a lot faster and been taken care of.  I tested negative to factor V.

I have been told since then that I would immedately seen when  I do get pregnant and then I would get shots of blood thinners.  Now, I'm waiting to get pregnant again to find out what's our next step.  I am glad to know that I CAN have kids it's just going to be a struggle getting there.  

It's something I think about everyday and wonder why me sometimes...but I have learned I have to deal with this mutation and make my life better and do everything I can to do things right this time.
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1227139 tn?1462334630
Hi Shaasy03,

I so glad you found the group and that you could post your story.  I know first hand just how it feels to try so hard and then lose your baby.  I also know that it's terrible that the doctors who originally tested you did not explain why you were deficient so that you could take appropriate measures.  The one thing I would suggest to you - if it's possible and if your doctor would be amenable to this would be to find out if you can be pretreated before conception.  I was told - that I would be put on a Lovenox regimen pre-conception so that it would help me to conceive and keep the baby, not just be treated after I learn that I was pregnant.  When women are as affected as we are, certain things have to be done before hand instead of waiting until it's too late.  I think many practitioners do not really know this and unfortunately many times it's up to us as individuals to "educate" them.
If I had not pushed my physicians as hard as I did, I likely would not be pregnant right now.  I do believe there is hope and that MTHFR can be over come.

I have read many medical journals that indicate, a pregnancy with MTHFR can be successful up to 70-90% of the time when treated with Lovenox and other medications.  If this were not true, I doubt the studies would be there.

Now, having said that, even at 90% leaves 10% of the time where it may not work.  But I will keep the faith with the 90% and hope for the best.

Are you taking your high level Folic Acid and B6 & 12 vitamins currently?  If not you probably should be no matter what.  I started taking my baby aspirin immediately after my last loss along with the 5mg Folic Acid and Vitamin B complex.  I think it' what helped me to conceive this time - since before that I was having a hard time getting past the first missed period.  I would conceive but not implant, and my hCH would rise and then fall, and terrible old AF would show up even though 4 days or so late.  My new OB also figured I was deficient in Progesterone, but somehow this time even without the progesterone, I have managed to conceive and stay pregnant so far.  I know it's still early (5 weeks) but I am more hopeful then ever this time around.  

I hope you will keep us updated as you see your doctors.  Do you know if your hCG has gone down to below 5 since your loss?  For me in my 2nd loss (this past June 7th) it took until nearly the end of August for my hCG to dimisih down so that we could start trying again.

It sounds like while you have struggled very hard, you have your sights on target now and that you will get there.  I admire your tenacity and strength!   I am sure sharing your story will show others too that they are not alone.


Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator
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Avatar universal
I am taking 4mg folic acid a day 500mcg b12 and 100 mg of b6.  I also have to take a baby aspirin a day.  I'm waiting for my insurance to change and then make another appointment to see them for pretreatment.

Yes when I had my blood tested on like the 3 week of september (about a month after m/c) I was back at 0.  So they told me I was fine to try again, however, insurance did not say the same.  I now have to wait 6 months b/c of the type of coverage changed.
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Avatar universal
Okay...found out I'm pregnant...tryn to get seen by doctor now...
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977943 tn?1302255020
Congrats & good luck to you! I also have MTHFR.  I've had 3 prior m/c's, but have a healthy 11 year old son that we had before I knew about the mutation.  He was born with  a dimple on his spine, but not spinal bifida.  I guess we now know why and I am very thankful for the miracle God gave us.

I am now 15 weeks pregnant and everything is going wonderfully.  I am taking a baby aspirin daily as well as Metanx which combines all the folic acid, b12 and b6 I need into 1 pill.
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Avatar universal
I have been to the doctor and he says that he's not putting me on a blood thinner b/c my chances for miscarriage will triple.  He said he can't have that.  However my bloodwork from yesterday was not good.  My progesterone was very low...which he did perscribe me progesterone I started taking yesterday.  He had me come back today for more blood work and he knew it would double but he knew it would rise.  He is going to call tomorrow with that result.  He said that my progesterone was very low and my hcg was low also and I probably would miscarry.  I have not noticed any clots like I normally do around this time of the pregnancy.  I'm just praying that it's very early and the hcg level isn't high, and it keeps going up.
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1227139 tn?1462334630
Oh Shasy03,

First I had wanted to say Congratulations, but then I read further the last post you just posted and I am hoping like crazy and with everything I can that things will be okay.  I wonder why he thought that putting you on a blood thinner increased your chances for a miscarriage?  It's just my opinion but I think your doctor should be sending you to a blood specialist or a specialist in MTHFR, if you have one there.  It makes absolutely no sense to me that he should make decisions about treatments if he doesn't know much about the problem to begin with, much less the treatments.

How are you doing now?  I know it's been a while, and I don't think I had seen you post anything yet so I am hoping it's good news?

Please let us know....

Sandi
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1085628 tn?1326551885
why would he say that about blood thinners ?  I am on blood thinners
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1227139 tn?1462334630
Shasy03,
Just as GinaGi is asking, I think your doctor needs to be more informed about the cause of Miscarriage and it's links to MTHFR.  Most often the cause of early-early late miscarriages are from clotting issues or issues with the placenta and clotting.  Therefore it is reasonable to conclude (and this information is from specialists in the field) that the blood thinners would help to minimize any potential clotting issues so strongly connected and associated with MTHFR.

Shasy03, if you are still pregnant - (and I very much hope so) that you do consider a second opinion by someone who is strongly educated in this field.  Many of us who suffer with these mutations are on Blood thinners since it is one of the only course of treatments along with 200 times more folic acid and vitamin B complexes - and MOST importantly high risk prenatal care.

Please let us know if you can, but most importantly follow the advice of your physicians over all, but make sure you are comfortable with their treatments.  There are things you can take on your own which are safe in pregnancy such as the increased folic acid and increased vitamin B complexes.  Perhaps if he wont consider the blood thinner shots such as Lovenox (low weight molecular Haparin) you could try him with baby Aspirin which many people take daily and it is said that those who have MTHFR issues should take Baby Aspirin for the rest of their lives.  I take a baby aspirin 12 hours after I have my Lovenox shot, just to cover the 12 hours after the shot - as is shown in medical literature that Lovenox or any blood thinner should be taken every 12 hours.

Just a few more thoughts.
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1227139 tn?1462334630
Oopss spelling - Heparin.  
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Avatar universal
Sorry it's taken me so long to get back to you ladies.  I miscarried on Nov 9th and am being referred to a reproductive endocrinologist.  My doctors (I live in a very small town) seem to think they are not but so educated on MTHFR and feel it's better to be sent to a bigger town to be seen.  So, I've been waiting for 2 weeks going on 3 to get an appointment and have YET to hear from them about an appointment.  I'm going to call another university about an hour or so from here and see what they can do b/c Wake Forest isn't responding.
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