Mthfr: Levenox and folgard, how much to take?

[lila]

HI ALL,

If anyone has MTHFR I am wondering how many folgards your drs put you on. My re says 1/day while ttc and then once pregnancy is confirmed 2/day. I have 2 c677t copies and have read that with this particular mutation you should be on 2/day whether pg or not. Please give me insight. I am not sure what to do! Also, are you on levenox during pregnancy? If so, when do you start taking shots, before pg or once pg? What dose do you take?

Thank you!!!

[TTCyears]

Perhaps your doc sees something in your BW, or has experience, or other studies that indicates different dosages for you at different stages, e.g. TTC or pg.

I see that Folgard 2.2 has 2.2mg folic acid. Taking two a day would correspond to my first RE's TTC prescription for me: 4mg daily. I am compound heteroz which is similar to homoz c677t in RPL studies (folks whose folate metabolism is significantly impaired). However, my 2nd RE took more BW and immediately decreased that to 0.8mg and, as I posted separately, my 3rd dr looked at my general medical history and took me off completely.

So, two of my three drs thought 4mg was ineffective or counter productive while TTC, so would lean towards your dr's recommendation. (I'd love to know if your dr is part of the "too much of a good thing" camp... or just has some other reason.)

Wishing you a healthy pg and baby!!!!

[lila]

TTCyears- Thanks for responding! I spoke to my nurse yesterday and she said that they are most likely going to put me on levenox in future while ttc and pregnancy. I am not sure yet of the dose or when re wants me to start taking it but from what I've read I want to start on cycle day 6. The mutation of mthfr I have has the most risk for clotting and since I was on baby aspirin before and during both my pregnancies since I did IVF I feel and so does re that baby aspirin isn't enough. I was able to do a chromosomal analysis on my first baby and it came back normal so there really is no other explanation. This m/c I was unable to collect any tissue so I couldn't do analysis. I am not 100% sure about taking levenox(it's kind of scary) but I do know that I don't want to have another miscarriage. Also, the mthfr can prevent implantation so we are going to try on our own for a couple of months with levenox(as long as re is on board) and see what happens. I just hope that this is the answer.

On another note, I spoke to a different re yesterday and explained my situation to him and he said he would keep me on the baby aspirin/folgard regimin. I then asked him how many miscarriages he would let me have before taking a more aggressive approach and his response was "I think if you had one more I would put you on levenox"! I was astounded!!! I have to go through another IVF, spend over $10,000, go through all of the emotional turmoil, put my body through all of that AGAIN and then we'll take it more seriously. I DON'T THINK SO! As you can see I am a little upset as to what these drs will put you through before taking action. I am upset that my re didn't put me levenox before my fet. I spoke to him and the nurses everytime I saw them or spoke to them on the phone about making sure we take all measures to ensure that the mthfr is under control and each time they said that baby aspirin and folgard are enough. Now that I miscarried again they say we have something to worry about and approach it differently. It just makes me so angry that after all that I've been through to get pregnant I could've prevented my miscarriages!

Sorry to rant on but I really needed to get that out!!!!

Thanks for listening!!

[TTCyears]

Rant away! I hear ya!

Do dr's make the choice because it's in our interest or theirs or somebody elses? I know some patients don't want to know and do want the dr's to make all the choices, but what about the rest of us (majority?) who want to be educated by our dr's (or elsewhere if the dr's don't oblige) so that we can make the choice? It's our risk.

We each have our own experiences and situations and I would like to be treated for my situation, not standard protocol (although I understand they start there).

(disclaimer: this paragraph is meant to illustrate the freedom of individual choice and experience) Having had a Class IV hemmorhage that marked the end of my recent pg and nearly my life (thank god I was not on a strong blood thinner!), my dr would have to be convincing to prescribe me Lovenox since I've nearly been the 1% the upside better be enough! But shouldn't you and I be informed so we can make the choice? It's our life to risk to save our child's life.

Dr's tell so little. My recent RPL was horrific : I was not informed of the full extent of the situation (I only knew from online posts!) and I am convinced an error was made (two pieces of information weren't put together). I wonder how it would have gone if the dr had been informative or if I'd asked more questions.

Kudos for you for informing yourself and getting the treatment you need!!!

[lila]

I am so sorry to hear of your RPL. I know how hard it is, especially when we have to go through so much to get pregnant. It is so heartbreaking and all day everyday I think about my babies that could've and should've been. I also get so upset at the drs for not paying enough attention to us. It's just not fair. I know they have a lot of patients but each of us deserve their attention so they can make informative decisions for treatment. I am happy that you survived such a horrible experience and I hope that you will have your baby!

We definitely need to be informed so that we know what questions to ask. My nurse actually said before we hung up yesterday to keep thinking of different options and don't be afraid to ask. I told her I will continue and I won't be afraid!! LOL

[TTCyears]

Lila, I love your nurse. She's a keeper.

I'm sending you lots of ***Baby dust*** and *** Sticky Glue***.

Hugs,
~Sharon