Negotiating

I’m finding myself in a new position. I don’t go to doctors. I tend to distrust the medical field (I know, why the heck am I doctor then?). I trust my doctors. I just think our healthcare system is messed up. We order too many tests, provide too many interventions, prescribe too many medications. So it kills me that I have to resort to such extreme measures to get pregnant, and this “unexplained” diagnosis is the worst possible thing for me. The “shotgun” approach to medicine is expensive and inefficient, and yet it’s where we find ourselves.

I was educated in the era of “evidence based medicine.” The idea that in order to provide the best care to patients, all decisions should be based on randomized control studies that have strong evidence to support the intervention. This is great, in theory, except there are a lot of things in medicine that have not been well studied. Every study has limitations. The results are only applicable to the population that was included in the study. And statistics can be manipulated to show just about anything (cynical? me?). Early on in this IF journey, what we were doing made sense. There are studies regarding the best treatment choices for unexplained IF (three rounds of Clomid/IUI followed by IVF). There are fewer studies regarding the best IVF protocol (which is why you will find many different protocols), but there are still some guidelines.

I have been looking for any study that is applicable to our situation. We have had two biochemical losses. No one has studied this. There are studies of “recurrent pregnancy loss” in people who conceive normally, and then have multiple consecutive miscarriages. They have found that after 3 miscarriages, it is reasonable to screen for certain blood clotting disorders which tend to cause late 1st trimester losses, and certain immune disorders which can cause early first trimester losses. They don’t screen everyone, because some people are going to have abnormal test results and then go on to have perfectly normal pregnancies. It is also expensive, so they reserve testing for people who have already shown that they are at high risk for pregnancy loss.

We don’t technically fall into this category, since 1) we’ve had such early losses that if we weren’t undergoing treatment, I never would have known I was pregnant and we never would have been categorized as having a loss and 2) we’ve only had two losses. But I don’t believe the “cost effectiveness” argument applies to people undergoing ART. We have spent $15,000 on IVF/FET and have had two losses. If we could have done something to prevent that, even just theoretically, I would have liked to have known before we started. And I don’t know if the risk of a false positive result should be a concern. When you are dealing with something as emotional as infertility, I think people err on the” it won’t hurt and it might help” side of things.

I have determined that I want some testing done before our next FET, but I don’t want everything. There is no good evidence linking blood clotting disorders to early pregnancy loss, so I’m not going to ask for any of that testing. The data on allo-immune factors is not great, so I’m not pushing for that yet (I need to research this more). We’ve already had the genetic testing done. The only workup that makes sense to me at this point is auto-immune testing, since this seems to have the best evidence for early pregnancy loss, and it would change our protocol for our FET if something abnormal was found.

So I emailed my doctor. I explained that I know we don’t fit the diagnostic criteria for recurrent pregnancy loss, and thus testing is not technically indicated at this time but given this is our last shot at a FET before we have to do another fresh IVF cycle, I would like some minimal testing done if she agrees to it. And she agreed. We are going to test for anti-phospholipid antibodies, lupus anticoagulant and anti TPO antibodies (there are a few studies that link anti-thyroid antibodies to early losses, likely due to underlying autoimmune disease).

I hope I jumped the gun on requesting testing. I am hoping everything comes back normal. But for my peace of mind, I needed to do at least this before our next FET. I wish this were my job. Researching this stuff is much more interesting than the stuff I am *supposed* to be researching.

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One Response to Negotiating

  1. Cristy says:

    I completely understand where you’re coming from. Though we only have one loss under our belts after IVF, I’m worried that something may be wrong that we haven’t detected. I’m in agreement with you about the data not being great, for any of this regarding unexplained infertility, with a lot of hand-waving regarding what could be the problem. I’m curious to see how your results come back, hoping that either you’re fine or it’s an easy problem to address.

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