Pregnant after MTHFR diagnosis

[Crystal5483]

Thanks!

I'm guessing the hematologist who dismissed me may not be the one to go to.

He saw the high anticardiolipin iGg and kept thinking that for anti phospholipid syndrome and never once mentioned the MTHFR results.

I'm going to ask if I should go see one at a different location. And if the FS has someone in mind.

 

[amjon]

I thought folate is folic acid?

My bottle says folate but the prescription is for 5mg folic acid..maybe folate's the name when its a higher dose?

I think folate is the natural version of folic acid that is found in veggies and things. Your body is supposed to be able to absorb it better than the artificial one.

 

[Emily7287]

I take an organic prenatal with plant-derived folate, extra L-methylfolate, Omega-3 + DHA, and a baby aspirin everyday. I plan on making whatever doctor I choose as my OB monitor my progesterone from the day I get that positive HPT... I'm wondering if I shouldn't harass my current doctor for a progesterone supplement just in case?

I started progesterone from cycle day 14. With my previous pregnancies, my progesterone level was very low - 3 & 6 I think. Now it is 32

 

[Emily7287]

I think that women with MTHFR have trouble processing Folic Acid. However, the form called L-Methylfolate bypasses our mutation and enables our bodies to absorb the "folic acid". Just make sure that you are taking a prenatal like NeevoDHA or a supplement of L-methylfolate (Deplin or Metanx are a couple).

 

[MackMomma8]

I think that women with MTHFR have trouble processing Folic Acid. However, the form called L-Methylfolate bypasses our mutation and enables our bodies to absorb the "folic acid". Just make sure that you are taking a prenatal like NeevoDHA or a supplement of L-methylfolate (Deplin or Metanx are a couple).

Yes, exactly. People with MTHFR cannot process synthetic folic acid - so if you are taking it, it's not doing you much good.

This is an excellent, informative site about all types of the MTHFR mutations.

 

[Crystal5483]

So my FS nurse thinks I need to just come in and see my FS doctor. Can you ladies advise me of things I should ask?

Folic Acid vs Folate... So what should I be on?

B vitamins?

Hematology?

Alternative to baby aspirin?

Heparin vs Lovenox

Etc??

 

[TTC#1Amanda]

Crystal, i would ask everything you have listed there..when i first went to my fs i had a note with all the questions i wanted to ask..


ladies how are we doing? Anyone been for scan?

 

[Crystal5483]

Amanda thank you for the reply I definitely have to make a list of all the things that I want to ask. Especially since I found out yesterday that I'm pregnant again. Luckily since I found out about the MTHFR I went and bought extra folic acid and b vitamins and have been taking those religiously. Now I just have to meet with him tomorrow and ask about thinners... especially since I cannot take aspirin.

 

[TTC#1Amanda]

Amanda thank you for the reply I definitely have to make a list of all the things that I want to ask. Especially since I found out yesterday that I'm pregnant again. Luckily since I found out about the MTHFR I went and bought extra folic acid and b vitamins and have been taking those religiously. Now I just have to meet with him tomorrow and ask about thinners... especially since I cannot take aspirin.

Wow congrats thats great news, i only take folate and asprin and herapin havn been taking any extra vitimans but i also didnt know which ones to take or not to take.

how many weeks do u think you are?

 

[Crystal5483]

Very early... I'm only 10dpo today

 

[happycloud]

Hi ladies! I'm MTHFR heterzygous and am on my first cycle ttc with this knowledge. I've started femara and will do lovenox starting on ovulation. My FS has me on 4g of folic acid and although I've asked him/his nurse about the whole 'shouldn't I be taking folate?' thing and was reassured folic acid was fine, I'm still nervous that I should be on the active forms of folic acid and B vits. Anyway...Crystal, did you end up on folate? lovenox shots or similar? I hope to be joining you guys soon with a pregnancy. I'm nervous about giving myself shots though!

 

[Crystal5483]

Happy yes I am on metanx which has active forms of folate, b6 and b12. It has I think 3mg of folate. I am not on any anti clotting measures at this time. I will be asking about it when I see the NP on 12/26. I have an ultrasound on that day as well. I saw my bean and a HB of 111 at 6+2 on 12/10.

I'm allergic to aspirin and my FS would have just put me on baby aspirin if anything. So I'm curious what the NP will suggest.

 

[happycloud]

Good luck tomorrow! Let us know what the NP says as far as getting you some anti-clotting measures! I'm supposed to go in for my scan tomorrow morning and get the script for the Lovenox/learn how to inject, but we're expecting snow. I don't like to drive in snow!

 

[Crystal5483]

Thank you! I need to go to sleep but I'm so anxious about the scan and appointment. I'm definitely popping in the tummy area. I'm tired and I get nauseous and have thrown up three times. So I guess things sound good.

Once the NP found out I was MTHFR homozygous she scheduled the scan which I was thankful for. Im going to ask about the pros/cons to lovenox. I also want to ask to have my homocysteine levels checked.

Problem is we aren't telling our family yet so his parents think I have work tomorrow so I'm dropping DD off at their house at 8 and my appointment isn't until 10 and they're like 5 minutes from the doctor whereas we live about 20 minutes. So I don't know if I should go home or go somewhere else lol

I'm still in disbelief. I think I have my guard up high to brace myself.

 

[happycloud]

I started Lovenox shots yesterday...so I've done it twice now. Cried both times. I have some medical anxiety, so it's probably that vs. the actual process. It hurts a little but not too bad. I'm 4DPO, so really really hoping/praying/wishing that I'm pregnant and these shots will be worth it!

 

[amjon]

I started Lovenox shots yesterday...so I've done it twice now. Cried both times. I have some medical anxiety, so it's probably that vs. the actual process. It hurts a little but not too bad. I'm 4DPO, so really really hoping/praying/wishing that I'm pregnant and these shots will be worth it!

GL I'm now 13 weeks with twins and started at 4 weeks. DH (or someone else when he is gone) still have to give them to me. They've added insulin twice a day now, so I have 3 shots a day. The Lovenox have a much bigger needle though and sometimes the medicine stings a bit, but it's really not all that bad.

 

[Crystal5483]

I get so nervous because the NP has advised that they won't start any anticoagulant until 2nd trimester for me. I have to meet with Maternal Fetal Medicine too to even confirm if they think I need it.

 

[amjon]

I get so nervous because the NP has advised that they won't start any anticoagulant until 2nd trimester for me. I have to meet with Maternal Fetal Medicine too to even confirm if they think I need it.

Maybe you could try a hematologist or another OB? My FS OB (mainly saw them for my 2nd pregnancy that I lost and then went back in between pregnancies) said he's had success starting patients with clotting factor disorders on Lovenox right away when pregnancy is confirmed. We lost our 2nd and 3rd pregnancies before the 2nd tri. The 2nd pregnancy was a MMC that died at 6 weeks.

 

[Crystal5483]

I've seen a hematologist as well and he said I don't need them. That MTHFR isn't significant enough to treat with blood thinners as the risks outweigh the benefits.

And the NP that I saw said that typical treatment for MTHFR patients is just extra folate and lots of people go on to have successful pregnancies.

And the FS I was seeing said they don't treat patients with MTHFR with anticoagulants.

But the NP heard my concern, some with the OB and is going to have me consults with the maternal fetal medicine doctor (high risk) to see what she says.

 

[Tasha]

I hope you girls dont mind me following this thread? I am not pregnant but have a huge history which is complicated. I will spoiler it because it might bore some of you

Spoiler

Pregnancy one - little boy born screaming at 36 weeks after induction due to pre-eclampsia (April 2004)

Pregnancy two - pre-eclampsia controlled by medication from 26 weeks until going to be induced at 37 weeks got there and in labour. Little girl born screaming (july 2005)

Pregnancy three - PROM at 28+6, induction at 29+1, induction classed as failed at 29+3, born sleeping at 36+6 due to medical negligence, IUGR, a placenta that was 50% too small, 50% clots and a 10% abruption (may 2007)

Pregnancy four - Factor V Leiden discovered at 8 weeks gestation put on baby aspirin and clexane, pre-eclampsia controlled by medication, induction due to loss and fast labours, baby goes into distress during induction after they try to break my waters and there is none. Emergency section. Placenta looks awful. Baby has IUGR but is born screaming. (May 2008)

Pregnancy five to eleven - first trimester loses (August 08 to September)

Pregnancy twelve - more clotting disorders found, put on clexane, aspirin and progesterone. Taken off it all at 16 weeks. 21 weeks baby is extremely small on the anomaly scan. 22 week scan baby shows signs of fighting for her life. 24 weeks and 3 days baby girl is born sleeping. She was only 340 grams so around the size of a 19 weeker, the reason was medical negligence, early onset of severe IUGR, placenta too small, 60% clots and a 10% abruption.

I also had a DVT onset started during labour but undiagnosed for a week

Pregnancy thirteen - first tri loss

Three months after that diagnosed with MTHFR (homo)

Pregnancy fourteen to seventeen - first trimester loses

And recently I've been diagnosed with natural killer cells

My protocol for a new pregnancy would progesterone from 7dpo to birth, steriods from BFP (20mg for the first ten completed weeks, 10mg for one week and 5 mg for one further week), clexane from BFP until 6 postpartum, 150mg aspirin a day from hb. Induction at 30-32 weeks.

Any way I thought I could help to support you all, since I will be (hopefully) in your shoes soon and also I have had one successful pregnancy (number four) with clexane and aspirin.

amjon did you get an answer to your questions about dvts, factor v leiden and gd?

Crystal, Raj Rai (works alongside Professor Regan) said the same thing to me about MTHFR and that a single gene doesnt need treatment. However, your instincts are telling you otherwise, so listen to them