Wednesday, January 23, 2013

Clouds in My Coffee: Vanity and Compound Heterozygous MTHFR

I found out yesterday I'm compound heterzygous for MTHFR (C677T, A1298C). That could very well be the cause of my 2012 clotting extravaganza. And it's one more obstacle in trying to get pregnant. Ever since I found out, I've spent my time crying, obsessively googling, and wondering what it all means. Does it mean we're not supposed to try for bio kids? Does it mean we're supposed to try harder? And where do I get off thinking this is some sign from the universe directed at me?

I just don't know what to do. In early 2010, when they said I'd have to have surgery before even an IUI, we wondered if that was too much to do for a pregnancy. But they said I had to have the surgery no matter what, so we did it. Later that year, when they said we'd have to do IVF, we wondered if that was too much. Then they said I'd need a second surgery and we drew the line there and moved on. And then regretted it. Now I'm at risk for blood clots (due to my previous clots alone) and my MTHFR mutations put me and any potential pregnancy at risk for a myriad of health problems. Do we keep pushing forward?

I feel like my identity is not my identity anymore. Thanks to mandatory mail order pharmacy, I have 10 boxes of generic lovenox sitting in my house. I inject myself twice a day and have a body full of bruises. With this new MTHFR diagnosis, I'm about to add to my growing number of bottles of supplements. I'm at risk for heart disease, stroke, cancer, and Alzheimer's (and a million other things if you read some of the scarier websites). Any potential pregnancy is at risk for birth defects and still birth (not to mention inheriting my mutation). I don't want to be this "sick" person. And I don't want to follow my grandma's path through years of dementia. (I am really scared of that) I've always felt healthy and capable and now I feel like neither of those things.

Maybe I'm over-reacting. Or just need to wallow for a minute (2013 was supposed to be better, damn it!). I'm working on figuring out what I need to do/take to keep my homocysteine levels low and get the folate I need. I have follow ups with pulmonology, hematology, perinatology, and reproductive endocrinology. One step at a time. But I don't know what the next step is supposed to be. I wish the universe would give me a sign.


  1. I am so sorry to hear this. I just found your blog yesterday and read it all. My heartaches for you and makes me feel like my TTC journey is a breeze thus far. I will send you loads of positive vibes!

  2. I have MTHFR C677T homozygous. I was in tears and worry just as you were and come to find out after countless doctor visits to different specialities this is more common than we know. My hemotologist said about 1 in 5 women have it now. It's passed down from our parents. I'm currently 8 weeks pregnant and doing fine. I see a hematologist who follows my homocysteine levels to make sure they are not clotting. Thankfully I have been normal in that blood test. Now I am on daily lovenox injections once a day for the entire pregnancy. I also am on folgard a script folic acid since we need more to absorb. If you have any questions let me know. I have been in your shoes terrified. Now I'm not! I have met several women since finding out I had it a s no problems with having a healthy baby to term :)

  3. Wow, I'm sorry that the world keeps throwing hard stuff your way.

    I'm pretty sure there's no right or wrong way to proceed though, and that the universe isn't trying to tell you to just adopt 1000 cats instead. I'm sure you guys will make the right decision for you and your family.

  4. Reproductive endocrinologist helped. me the most. I eventually had 4 pregnancies, 3 births. Biggest obstacle (and it was big, no lie), was that thanks to the whole MTHFR issue, I had two placental abruptions. Research and discuss with your doc is my suggestion.

  5. This whole game is all about losing your identity, as far as I can tell. The good news is that it will be waiting for you, only a little bit no longer the right size, when you get through to the other side.

    You are and have been dealing with big, big shit for a long, long time. OF COURSE you feel wrung out. It would be weird if you didn't. You don't feel this way because something is wrong or irrevocably broken about you. You feel this way because this shit is hard.

    You are still you. Yes, you are changing, but that is what life is. You are not disappearing.

    (Also, sorry I have not been commenting; it's hard for me to get online these days except on the ipad, and blogger hates ipads. I have been thinking of you.)