Yep, I've got it. That damn gene mutation --MTHFR-- that I see all over the blogosphere. (Don't pretend that's not how you read that acronym, either.)
I am apparently heterozygous for A1289C. While that's a very common mutation (it is estimated that,like, half the population has it), and it's easily treated with folic acid and B-vitamin supplementation, it is also a possible explanation for our early miscarriages.
Know what else is? The ugly looking scar tissue Dr. Expert found that has basically fused my uterus shut. You know, the scar tissue I was worried about post D&C? The scar tissue I asked Dr. Down-to-Earth about before doing both our second fresh and second frozen cycles? The cycles that ended in a chemical pregnancy and an outright failure?
Yeah. To say that I am not happy is an understatement.
On the one hand, we finally have some ANSWERS. Which is great. Everything Dr. Expert has found can be treated. I will have surgery in early August, Mo can start the Clomid, and baby-making sex can commence as planned (that still seems like a bit of an oxymoron to me. Babies come from sex? Really?)
But, wow. Looking back, I am so angry. I am angry that Mo's counts were ignored for so long, and no one thought to check his hormone levels as a possible cause. I am angry that IVF with ICSI was presented as our only option. I am angry that Dr. Optimistic failed to tell me soon enough to increase my thyroid medication, which also could have contributed to the loss of Baby#2. I am angry that Dr. DTE neglected to include the MTHFR test in my miscarriage panel that was run before FET #2, and that he didn't think it necessary to check for scar tissue before either cycle, knowing that I had a D&C prior, and despite my voicing concerns about that very issue.
I feel like so many people that I trusted dropped the ball. Everyone assured me that our first loss was just a fluke, and it likely was. But after our second, I wanted EVERYTHING ruled out before proceeding. It wasn't, and now we have lost a year and $20,000 doing two doomed cycles. And we will spend another year gearing up for our final try.
So there you have it. The good, the bad, and the ugly. I suppose every one of us with RPL or repeated ART failures feels this way at some point. We finally have some answers...I just wish we'd found them a little sooner.
Friday, July 13, 2012
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I would feel pretty damn angry too. It may help to write a letter to the old clinic's director and outline the situation you went through, and how a lot of the heartache may very well have been avoided. This has not only put strain on your heart and your finances, but on your marriage too and that's just irresponsible and not ok.
ReplyDeleteAlso? I totally call it the motherfucker mutation. Always.
I am angry for you that so many people dropped the ball. I am glad you finally have answers though. I have recently been tested for MTHFR (thought I was the only one who thought "motherfucker" every time I saw those leters :) ) Haven't gotten my test results back yet though.
ReplyDeleteDamn. I would be so angry, too. All those things should have been diagnosed much sooner. I assume you'll have a hysteroscopy to deal with the scar tissue?
ReplyDeleteIn terms of MTHFR (which I have, too), my hematologist said that in itself isn't a problem; if your homocysteine level is elevated as a result, it is. But you can't test homocysteine if you are on folic acid supplementation.... Anyway, I was on Folgard and baby aspirin to deal with that issue. And yes, I've called it the same motherfucking thing :)
I'm so glad you finally have some answers, but it sucks that it took so long to get them (plus the cost of treatments, heartache, failure, etc). I hope you can deal with the anger, and then move past it and toward what could be a very bright future!
ReplyDeleteI am so sorry that you have gone through all of this. I too have MTHFR - homozygous. I was told similar to Gwinne. My homosysteine levels were normal so I was told that MTHFR is not that much of a concern. I did however decide on my own to take baby aspirin and I truly believe that is what helped us. Wishing you the best - hope now that you have some answers, you can come up with a great plan to help you too!
ReplyDeleteAfter 7 years of TTC and what I know now were at least two miscarriages, a fertility specialist did an RPL panel. Guess what? I tested positive for compound heterozygous c677t and a1298c MTHFR (and yes, that's what I think every time I read it too).
ReplyDeleteI was pissed when I found out that no one had ever done RPL testing after what I knew in my heart were miscarriages.
I'm sorry it's taken this long to find out the answers for you.
Sorry, head, butterfingers
ReplyDeleteI'm frankly shocked. I lack the faith that saying something to your clinic's director will accomplish anything. But I can't help feeling that something should be done.
ReplyDeleteI think I'm dense enough that I need a lot of things spelled out, but...given what you've been told at this point, are they saying that (with the scar tissue taken care of, medication, etc.) you should expect to get pregnant JUST BY HAVING SEX? This is revolutionary. Please keep us updated.
I can't believe so many people dropped the ball! You have every right to be angry- I would be too. But hopefully now that you have some answers and a plan things will fall into place for you guys!
ReplyDelete