MTHFR

I finally was told my CORRECT results from my b/w. I apparently have 2 mutated MTHFR (spelling?) genes. So, my doc doesn't really put a whole lot of stock in this. He thinks it is a "fad" diagnosis and will go away in a few years (in the literature). He isn't completely convinced it is anything to worry about but did say we could do Lovenox after I find out I am pregnant (please LORD!) if we wanted to go that route. I need some information and some stories (ood or bad) about MTHFR, what meds you used, what worked, what didn't...anything you got! :) Thanks girls. We will be trying again next month so I want to have all the information before making a decision. :)

SSBD to all!

jen

[Kricket212]

It seems that very few people comment on these posts when they are up from what I have seen.  I recently (Jan) was also diagnosed 2 mutations of MTHFR -c677T & also PAI-1.  I was also told to take lovenox when confirmed pregnant.  What mutations is yours?
If you google & research you will get lots of info although it's not a direct connection to miscarraige (miscarriage) although some say it causes it.

Best wishes to you & I hope it works for both of us.

[scienceteacher79]

I have the one that starts with an A - it's Asomething something somwthing something..idk :) I didn't even realize there is a difference...jeesh - I got a lot to start looking for. I was hoping someone could help me lessen my research. :)

How are you doing Kricket? I haven't been around a lot lately. Miss seeing everyone.

Jen

[dainsey]

Hey girl,
I have the exact diagnosis and before I got diagnosed I had 3 miscarriages and they tested 2 of the 3 and they came back normal so the ob knew that it was my body rejecting the pregnancies.  So he put me on extra folic acid, B complex, baby aspirin and heparin and the next pregnancy stuck and I had my little girl who turned 2 last week.  Then for my 2nd pregnancy he put me on the same thing starting 6 weeks before I started and I got pregnant and had another little girl born in December.  I would have left my ob and found someone else if he didn't agree to give me the heparin as I've done a ton of research and I really believed that the heparin was going to help....and it did...:-)  Can you ask for it?

[Kricket212]

You said you have the exact daignosis. Can you explain which you have?  Which MTHFR do you have? Do you have the PAI-?  You mentioned your Dr put you on it 6 weeks prior.  Can I ask why? My Dr said not until i am confirmed pregnant & that is from a homotoligist. Blood thinner can be dangerous. I am on baby aspirin (Forever) along with the folbic acid.

Science teacher..let me know which one you have when you find out.

[Helen72]

Jen,
Glad you have a diagnosis and perhaps can do something about it to help your little one stick.  Glad to see you on the forum again!

[Jenny5]

I only have one gene positive and also will be on heparin during pregnancy. I had the third IVF last year and was taking the heparin but m/c. So i don't know if that gene it has to do anything with the m/c. Every doctor is different in the opinion for the MTHFR.

[usuk]

I have it but I am on 3mg folic acid along with prenatal and baby aspirin. No one has said this caused my 3 losses. But then again i was not diagnosed until after the 3rd.

[usuk]

There is heterozygous and homozygous MTHFR FYI.

[scienceteacher79]

I am homozygous (2 copies) for the A1298C. The doc said if want we can start on the lovenox (blood thinner) as soon as I am confirmed preggo. I was reading up on it also: I apparently need prescription folic acid (for the rest of my life - whether TTC or not) and baby aspirin (for the rest of my life) because the homozygous causes clotting in small vessels in the body (AKA - UTERUS - UGH!). but the weird part is that I had my daughter at 19 (not with my NOW hubby) and had no problems with her except pre-eclampsia (which also can be caused form the mutated genes...great :(

So, DH and I pretty much decided we would do the lovenox if we are confirmed preggo. If we start the lovenox, we have to stay on it throughout the pregnancy (UGH!). But I don't care, I just want a healthy baby.

The part that peed me off was when I talked to him (doc) on the phone 4-6 wks ago, he said my bloodwork and genetic work up were fine..and then hits me with this...UGH!!! BUTTHEAD!!! :)

PS: anyone started the lovenox FIRST before even starting stims or is it usually after confirmed pregnancy? ohhhh, and how expensive is it?

Thanks girls and SOOOO glad to be back :)

HUGS and SSBD!

Jen

[alaskacouple]

Jen -- good to see you again!!
I too have been diagnosed as the "homo" type (hahahaha) sorry....

After having two very early miscarriages, my doctor ordered the blood work.

Anyway, from what my doctor said - Lovenox should be started right after egg retrieval. Before hand could make your ovaries bleed.
Again, going by what 'the dr. said' -- my body wasn't allowing the embryo to 'suck off my blood' ---- the embryo would try and start to implant and my body would clod the blood supply to the 'invader'

So....
The day after retrieval, I started .40mg Lovenox injections and 1 baby aspirin.
I have been on extra folic acid for months, and yes it's a prescription form.

We are currently in our 2ww.

Good Luck to All!!!  SSBD!!!

[alaskacouple]

also.... the 'homo' type causes seizures, and DVT -- so if you travel alot, exercise the legs, get up often and stretch!!

[scienceteacher79]

It is interesting you said that. I get pains in my legs every once in a while. It definately feels like a "clot" but then goes away eventually. It doesn't feel too bad but not fun either. Ugh - more problems I need - ugh :)

When I had brain surgery (long story) a year and a half ago, I have problems with "tiny seizures" afterwards but my neurosurgeon said it was because they were tinkering around in there and they eventually went away :)

How are you doing, alaskacouple? Missed talking to you!

[scienceteacher79]

Oh - and does anyone else see the humor in the word: MTHFR? or is it just me :) hahaha

[Mariana101]

I DO :) I know exactly what you mean...... no body Knows the reason for "unexplained infertility" all those MTHFR doctors !!!! hahhahahahahaah :)  (Sorry dear doctors... but we are very angry and frustrated... just responding to Kricket's joke)

[Mariana101]

not Kricke'st.... scienceteacher79's :)  

[scienceteacher79]

:) Glad someone else sees the ironic nature of that word :)

[Savanha]

Oh, the irony is Soooooo CLEAR. (ha) Is there a special type of lab that should be requested for this?

What is the difference btwn Hep & Lev?

[Savanha]

Lovenox & Heparin

[scienceteacher79]

My understanding is Heparin is stronger stuff (depends on dosages I guess) and may possibly cause problems if used long enough etc while carrying a baby. Lovenox is safer while preggo. The heaprin seems to be used at the tail end of pregnancies since it has a shorter "half-life", which just means it goes away faster in your body. They did this so people don't bleed like crazy when they give birth (which is a bloody experience without blood thinners!!) Lovenox sticks around in the body longer and it wouldbe risky to have thin blood while giving birth.

I just asked my RE to run the "recurrent m/c" panel and get my chromosomes checked. Took about 12 vials (or was it 10? I dunno, started to get really dizzy!) of blood and it took about 2 weeks to get all the info back. At first doc said it all looked good. Then 3 months later, when I went in to discuss what we wanna do next, it's suddenly "Oh, you have this - but don't worry about it"...WTH? Sure, I will just not worry about something that could quite possibly be killing my babies...okey dokey. I will get right on that genius! UGH!

so I am definately going on the Lovenox if we get preggo :) Then praying for the best!!!!