Lilypie Second Birthday tickers

Saturday, June 6, 2009

MTHFR is a MTHFR

The more I read about this disorder, the more I freak out. I tested positive for both mutations, making me the dreaded "compound heterozygous." (or, as these articles would have me believe "compound you're-going-to-die & have a defected baby)

PLEASE - I want to hear from any of you who tested positive for both mutations. My homocysteine level is 12.2, so borderline high. I was reading lots of articles, and I'm feeling depressed and terrified. They make it sound like you're going to have an alien baby that will be a sillbirth. Is this God's way of telling me I'm cursed and should not have kids, and adopt instead?

Check out this snippet from an article:
Research shows that high homocysteine levels and/or those with the mutation show a higher propensity for thrombosis (blood clots), arteriosclerosis (hardening of arteries), Alzheimer’s, stroke, heart attack, Fibromyalgia, migraines (especially with “Aura” migraines), osteoporotic fractures, bone marrow disorders and for those of child bearing years, it has found to be connected to higher incidences of down’s syndrome, spina bifida, other neural tube defects, trisomy, miscarriage, stillbirth, implantation failure, placental abruption, preeclampsia, higher incidences of autism, amongst others.

Also my homocysteine levels are 12.2. I looked up what that means:
12 to 14.9 units
High risk for premature death from degenerative diseases

Ummmmm. So my IVF doc put me on baby aspirin and Folgard, which I will take religiously. Will this prevent those issues, or is it more of a Hail Mary?

I'd love to hear from anyone who is compound heterozygous, and especially if you went on to carry a child!

4 comments:

N said...

Breathe. I've been having the same issues.

The folgard lowers your homocystein levels, because it allows your body to process it and make it into the methianine. The higher homocystein levels are what cause all those horrible problems, and so the folgard should be enough. I'm super paranoid, and taking extra folic acid & b vitamins.

The baby aspirin is sort of like a back-up, a just in case.

Me, I'm paranoid because my doctor doesn't think it's necessary for me to go on lovenox now that I've got my positive, but said that he'd do it if I wanted, so I'm trying to figure out if it's necessary or not. He thinks that the baby aspirin is enough. I don't know what to do.

This whole thing sucks, but you're not alone in the least.

Pufferfish said...

I spent a few days freaking out too but I don't have the compound mutation.
I did wonder with all of your migraines if you were going to be in this boat. I'm sorry that you are...but it's good you got the tests and you CAN take control of this.
Although my RE only said I needed baby aspirin--I insisted on a RX for Folgard. I am also taking a folic acid/B12/B6 tab--just in case.
I would talk to your RE about Lovenox. If it can't hurt and it could possibly help...then why the hell not??

I've seen lots of success stories out there....it's not impossible, you just need a bit more help now.

Stacey said...

i know nothing about this so cant comment, but i can say the internet is scary, and when we found out Ava had a 2 vessel cord we read everything and she was at risk for all these things and none of them happened... they included still birth, holes in her heart, downs syndrome, etc etc...so it should all be ok. sending love .

Sarah said...

Why don't they want you on Lovenox when you get pregnant?