The reality is that there ARE other factors that could exist causing problems other than just "old eggs" or "bad embryos." Luckily my RE is receptive to any requests I make and allows me to visit things I have questions about, but he isn't the one who even brought up having this testing done. It was me and my own research that led me to want to investigate blood clotting factors as a possible cause for my pregnancy losses and issues becoming pregnant in the first place. So, I consulted with one of the most knowledgeable resources I know of (my online infertility support group) and compiled a comprehensive list of things which are commonly tested for in an RPL. I printed the list out, took it to a hematologist, and had a full workup done. In case you have ever wondered what is typically tested for in an RPL, this is the list I took to the hematologist...
Prothrombin Time (PT)
Lupus Anticoagulant Panel
Factor V Leiden Mutation
Factor II, DNA Analysis
Chromosome, Blood, Routine
Beta-2 Glycoprotein l Ab,G,A,M
Anticardiolip Ab, IgA/G/M, Qn
ANA w/Reflex if Positive
Activated Protein C Resistance
15 vials of blood later, I was glad I had the testing done, because it turns out I have 4 significant blood clotting factors...
Protein S deficiency
The hematologist tells me that these things are associated with miscarriage (especially when there are multiple factors) as well as autoimmune issues (especially lupus-based on the combination of the first two antibodies listed) and Rx's me daily Lovenox injections and baby aspirin for my next pregnancy as soon as a pregnancy is confirmed. He tells me, "I'm not going to tell you that you have lupus at this time. What you do have is some sort of autoimmune issue going on and your blood vessels are basically attacking themselves." He tells me this stuff is typically hereditary as well and to do some digging and see if anyone else in my family has had similar issues.
Come to find out my sister was hospitalized for a DVT (deep vein thrombosis) is Rh- (autoimmune related blood disorder) and my mom's first cousin was diagnosed with lupus in her childbearing years and struggles pretty badly with it currently. Additionally, my sister and I are almost positive my mom had an undiagnosed autoimmune/neurological issue. She had very strange uncontrollable twitching in her hands for as long as I can remember, very similar to what you'd see in someone with MS or Parkinson's. I used to tell my mom to see a dr. all the time for it, and it definitely wasn't normal. Because my mom was adopted and is now passed away, this is the extent of my family history on that topic, but who knows if there is more autoimmune stuff I just don't know about? For me, the things I have found so far are enough to warrant more investigation.
I am no doctor obviously, but the inquisitive nerd with a laser sharp intuition that lives inside of me is. haha! Seriously though, ever since I received the news of having 4 blood clotting disorders and an "autoimmune issue" whatever that might be, I have had these voices in my head telling me there might be something there more strongly related to our inability to conceive, our pregnancy losses, and now our failed IVF (despite the fact that we transferred two perfect looking embryos and all other conditions were perfect).
I am also realistic and am not expecting some silver bullet answer to WHY this keeps happening to us. Most RE's and people out there know that miscarriage does just happen sometimes and that IVF is not always successful on the first try. We've all heard stories of people who tried 4+ IVF cycles before magically being successful. But what about those women who try and try and try and it never happens? They either never get pregnant or if they do, they just miscarry. There has to be some other answer besides, "The embryos just weren't as good as we thought they were."
I, for one, am not going to ignore the voices inside my head that are pleading with me to investigate more before I go throwing our 5 remaining frozen embryos into my body haphazardly. These are our babies, and I am going to protect them the best way I know how, even if they are only microscopic. Our frozen embryos are the only chance for a family we have left at this point. So, I've been researching my brains out, asking other women about their stories, and came upon a recommendation for the book Is Your Body Baby Friendly? by Dr. Alan Beer. As soon as I opened this book I could not put it down!
-blood clotting disorders
-endometrial lining issues (including endometriosis or thin lining)
-autoimmune issues or family history of them
Reproductive Immunology is still a fairly new field of science and the practice of using in-depth testing and protocols aimed to help those with immunological problems affecting their ability to become mothers is still quite limited. There are very few doctors who specialize in this field, and none that I have found yet in Austin, where I live. Additionally, some of the protocols they practice are controversial and not widely accepted in the medical community. However, I've got to say that after reading this book, I feel like there could be something going on with my body that has just been missed along the way.
Dr. Beer (who passed away in 2006) did not believe that "miscarriages or infertility just happen." He believed the body was designed to become pregnant and carry to term against all odds and in any circumstances, and if it isn't able to do that there is some issue preventing it from doing so. There is a REASON that some women have umpteen miscarriages or IVF failures and it's not just due to "bad eggs" in all cases. Furthermore, for women who have multiple failed IVF's and turn to using donor eggs as their last hope, they may only experience more heartache if there is an untreated immunity issue present that is actually the underlying cause of their troubles.
According to Dr. Beer's findings, in some cases ectopic pregnancies can even occur due to factors completely unrelated to the integrity of the fallopian tube itself, but can instead be caused simply by high amounts of autoimmune activity occurring in the uterus, like high levels of natural killer cells which are produced by women with autoimmune issues (basically these cells think the embryo is foreign and attack it or cause it to "run away" to a safe place to implant....possibly a fallopian tube).
One of the biggest takeaways I learned in this book that I can apply easily, is that for women like me with blood clotting disorders, Lovenox is needed much earlier than the time of a confirmed pregnancy for successful implantation to even occur. He recommends beginning it on CD6 of the cycle of conception, along with baby aspirin daily from CD1. Many times taking a steroid like dexamethasone or prednisone can also work jointly with the Lovenox to reduce inflammation and improve receptivitiy of the uterus in women like myself, who may have autoimmune activity present. The book gets even more in-depth with various protocols used for specific issues (like Ivig therapy), but I'm not delving too deeply into those very complex and expensive protocols quite yet. I'm taking baby steps to learning more, and I'm not ready to go there at this point.
The early administration of Lovenox and dexamethasone are two things alone that are low risk which could benefit someone in my situation. I was on dexamethasone during my IVF protocol, but it was discontinued before my egg retrieval. Why?? To me, this makes no sense and I will be asking to continue it post-transfer with our FET (frozen embryo transfer). Many times stopping or starting meds like steroids and even baby aspirin can cause an inflammatory response in the body of people who are hypersensitive, and that is something that should be minimized when transferring an embryo. Makes sense!
During our recent phone convo, my RE has already agreed that it's ok to start Lovenox earlier with our FET to help with blood flow and implantation. Because there is no egg retrieval (needles going into the ovaries) taking place, there is no risk for bleeding and blood thinners can be started earlier with FET's. There are zero risks to using Lovenox earlier on, so why wouldn't I want to do that to help? I will also be able to continue baby aspirin without starting and stopping this time around.
Given the fact that I have not 1, not 2, but 4 blood clotting factors in addition to some family history of autoimmune issues, I really feel it's worth investigating more. I am not looking to add another "problem" to my laundry list of issues already, but I think it would be totally irresponsible of me to ignore these red flags and keep throwing perfectly healthy embryos in my uterus to no avail, and then be forced to ask myself these hard questions anyways. I am all about being proactive. After all, if I hadn't basically demanded the RPL testing before, I still wouldn't even know I had those, and that is a majorly important piece of info!
Although there are no reproductive immunologists in my area, I have an apt. with a highly recommended rheumatologist on 5/22. This is the closest thing I could find to get more answers and at least he will be able to answer my questions about lupus or anything else that is strongly correlated with these pesky blood clotting factors. Perhaps he can offer insight into safety and efficacy of using low dose steroids to improve pregnancy rates and/or reduce miscarriage in those who experience repeated losses. Either way, I'm glad that I read this book. It basically confirmed the possibility of what my intuition has already been telling me, and I am now armed with a body of evidence to discuss with my doctors and ask the questions I need to have answered.