Cheating on my fertility doctor

If you’re reading this, it means you’re the kind of person (my kind of person!) who looks for answers to fertility issues online. And if that’s the case, you’ve likely run across the Colorado Center for Reproductive Medicine. They have really impressive statistics and are generally recognized as being a leader in the field of fertility treatments. So, after our FOURTH failed cycle from our clinic (I don’t count my cycle where we got pregnant but terminated after our anencephaly diagnosis a “failure” on my clinic), we did what many couples have done before us—we got a second opinion.

I have to admit, the doctors (two of them) I met with were VERY impressive. 

I’ve complained that we’ve never had an official diagnosis of what exactly our problem was. In other words, why am I infertile? We discussed my health history and the doctors suggested that a hernia surgery I had when I was a newborn might actually have had an impact on my fertility. They suggested that they have seen other examples of women coming in with tubal issues after having abdominal surgery, and that maybe my first three pregnancy complications / losses could have been related to that issue. (My first pregnancy was an ectopic, and there was further scarring of my tube after my second one, so it was also likely ectopic.)

They also suggested that my three failed IVF cycles last year—on genetically untested embryos—could have been because of genetic abnormalities. (That’s the unexplained failed IVF gut reaction.) Certainly the blighted ovum was likely a genetic issue.

And with our last failed cycle with a genetically normal embryo—well, that signals that there’s either a potentially serious issue or I’m just unlucky.

Anyway, CCRM suggested that with an extensive history of IVF failure—yes, that’s the bucket I’m in now—we should do a recurrent pregnancy loss workup.

There are three things they would like to rule out with that work-up:

(1)    A genetic translocation. They said it’s rare (1/500 people carries a balanced translocation), and in 3-5% of couples with recurrent miscarriage, one partner has a balanced translocation. These tend to be early first trimester losses. (Like ours.) They suggested that they could test our blood to see if we have it, and if we do the embryos can be tested to see if they carry it. (Our frozen ones would have to be thawed and re-biopsied. Apparently there is little risk to the embryo. Amazing!)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC558686/

(2)    Thrombophilia. They said the non-genetic form thrombophilia (acquired)—a clotting disorder, and more specifically a tendency to form blood clots—has been shown to cause early first trimester losses. They test for it with a blood test. If you have it they can treat you with Lovenox (a blood thinner) for the first 10 weeks of pregnancy. As the CCRM doctor said, there is a risk to the mom because if you’re in a really serious accident, well, you don’t want to be on a blood thinner. In other words, it’s not something to mess around with.

http://www.ncbi.nlm.nih.gov/pubmed/10823264

http://patientblog.clotconnect.org/2011/05/30/pregnancy-loss-and-clotting-disorders/

(3)    Structural abnormalities of the uterus (such as scar tissue). These tend to cause later first trimester losses, and are unlikely to be our problem considering we’ve been monitored for such things.

We also talked about our fresh IVF protocol (even though we’re very unlikely to do another fresh cycle). Every fresh cycle we’ve done, we have done a luteal Lupron protocol (also called “long Lupron” or agonist “down regulation”). I generally responded well to those cycles, and we got a number of fair quality embryos.

CCRM claims that that’s a “traditional” cycle. And they are “cutting edge.” CCRM says 95% of the time they do an antagonist protocol. (That works with normal menstruation, instead of putting patients on birth control. Instead of using Lupron on the front end they stim harder later.) CCRM claims an antagonist cycle allows for harder stimming and therefore more eggs without the risk for ovarian hyper stimulation syndrome. For a minority of their patients, they use a microdose flare (when patients have a diminished ovarian reserve and concerns about stimming too hard are not there).

Here’s a more detailed discussion of the different protocols:

http://www.advancedfertility.com/ivfstim.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3759499/

I confirmed that at the end of the day, the egg QUALITY is the same no matter the cycle—that is, one protocol might get you more eggs, but none of them will get you better eggs.

For frozen cycles (the most relevant question for us), they first confirmed that they will take frozen embryos from other labs—with some caveats. (They also noted that the embryos have to be SHIPPED and there is a risk (small) that something could happen to them.) First, the lab that froze the embryo has to be good enough quality. (They want good quality vitrification [freezing procedures]. They also might have to actually specially order the medium.) I know our lab just updated its freezing methodology, so I am certain they would meet that criteria. Second, the embryo has to be good quality. Apparently CCRM does not freeze crap embryos, and will not accept low-quality embryos. Third, if an embryo is genetically tested, the testing lab has to have a low error rate. CCRM claims that its in-house testing lab has a very low error rate—less than 4%. So they would want an equally quality lab. Our embryos were tested by Natera, so I’m sure it’s fine. (Although I do not know what their error rate is. It’s scary that there is an error rate and that it’s so high!) Finally, and this was the most interesting, CCRM is VERY open about the fact that its success rates are highly important. (Indeed, the first, second, and third rules are directly related to success rates.) Anyway, CCRM does NOT tell patients the gender of the embryo (one of the options when testing is done in-house) and they do not allow gender selection. Again, that’s not about morally being against gender selection, but about picking the absolutely best embryo regardless of gender to maximize for the highest chance of success.

That raised a really interesting issue for us. We did not do genetic testing with our first five transfers, so the gender was as much a mystery to us as it would be for anyone. But with our last transfer, we had two equally rated B2s. (Who knows if an embryologist could have said one was slightly better than the other.) One was a boy and one was a girl. Because we have a son we said, heck, put the girl in. That cycle did not work. NOW we have a B2 boy and two B3 girls—that is, the boy is a better looking embryo. Would we want to pick the girls over the boy, even though they would be less likely to work? Well, if we did transfer our embryos to CCRM, they would not give us that option—we would have to go with the boy. And it’s not clear from their rules that they would even accept our “crappy” girl embryos.

When I told my husband that they might reject our embryos if we wanted to transfer them, he was completely turned off. And, of course, I would NEVER transfer my B2 if they would not accept the others—what if I went through a whole cycle and then my B2 did not thaw? The idea that I would not have my back-ups to use… well, no way.

But I’m getting ahead of myself. Is there even a benefit to transferring my embryos if we’re just going to do frozen cycles? Unclear.

First we talked about FET protocol. They said for patients with recurrent IVF failure (again, my bucket), they have a “hail Mary” protocol. Most of it is the same as what we have done on our other cycles, but with some new stuff.

CCRM’s hail Mary FET protocol:

(1)    3x a day progesterone suppository (what we always do) PLUS every other day IM progesterone. (No more avoiding shots for me.) When I confessed that I have avoided shots in every cycle, the CCRM doctors acknowledged that there was no data suggesting shots are better than suppositories, but with their hail Mary they just do it.

(2)    Vivel patches. (I’ve done vivel patches in the past, but have been using estrace more recently.) Again, they indicated that there was no study that suggested one was better than the other, although the patches are easier on the liver. (I completely forgot how hard this is on the woman’s body!)

(3)    Prednisone (steroid) and antihistamine for 10 weeks. This is the “hail” part of it. They acknowledged that there was a controversial idea that there was an immune system response, and although there was nothing concrete for their “hail Mary” patients they go for it. (Again, anyone googling infertility extensively has probably run across Dr. Sher’s office. http://haveababy.com/fertility-information/ivf-authority/recurrent-pregnancy-loss-immune-therapy When I mentioned his name they were like, “oh, we don’t go that far!” I should also note that he does not actually offer any suggested treatment regiments online, at least that I could easily find. http://haveababy.com/fertility-information/ivf-authority/recurrent-unexplained-ivf-failure-with-good-quality-embryos)

That’s it. The hail Mary. But I can do all of those things at my lab. So I pushed, is there any benefit in transferring my embryos to your clinic as it relates to the actual transfer? It seems like not much. They two things they suggested were: (1) Good quality control, including the fact that the embryo is literally in an incubator in the room, so it spends almost no time out of the incubator / mom. (2) They use “embryo glue” in the transfer (acid) (literally—it’s called embryo glue http://www.vitrolife.com/en/Products/G-SeriesTM-media/EmbryoGlue/).

Those are benefits, but I’m not sure it’s worth the risk that the embryos might get destroyed in the move. I asked, “would you move your embryos if you were me?” They did not answer yes or no as it relates to me, although one of the two docs suggested she had done IVF and she HAD transferred her own frozen embryos to CCRM. 

We also discussed my prior pregnancy with anencephaly. I was worried that my remaining embryos were all created during that time and thus all might be bad. They were reassuring—the folic acid is most important during the time the embryo is developing, not when the egg is developing, so it’s not certain that all of my remaining forties are doomed.

I have an appointment with my doctor next week. I think we’re going to have some hard questions for him.