So I’m waiting, and waiting, and waiting still for my MTHFR gene mutation test results. Technically, I’ve been waiting about 2.5 years and just didn’t realize it. “How is that possible,” you may ask. Let me take you back to the beginning. Doctors typically look at the more common explanations for recurrent pregnancy loss with the basics; thyroid, progesterone, Rh factor, Factor V Leiden, and MTHFR to name a few. These basic tests help determine the correct treatment, and ideally prevent unnecessary heartache from miscarriage after miscarriage. If all of these tests are negative then further more in-depth testing can be done.
I vividly remember sitting in my first RE’s (Reproductive Endocrinologist) office years ago and hearing her explain my results to me. One by one she read my results while reading a paper from my file on her lap, “Thyroid is good. Progesterone is fine. Rh factor is positive, so that’s not an issue at all. No Factor Five and no MTHFR.” No MTHFR. No MTHFR. That’s what sticks out in my mind all these years later. I can still see her smiling at me optimistically, which I’m sure she wouldn’t be doing the same thing now had she seen everything I’ve been through over these years. But she retired shortly after I began my treatment with her. She was a nice lady, but in hindsight she seemed a little flaky and unfocused. But back then I attributed her forgetfulness of the details of my medical history to what I’m assuming was a high number of patients she was juggling.
Flash forward 2.5 years later to now. That first RE retired, my second RE retired this year, and my info was passed along to an OBGYN office in the same building. I called my insurance company and learned there isn’t a single RE left in the state that is in-network any longer. So I’m shit out of luck as far as getting a specialist who is properly trained in cases such as myself. What does this leave me with? In the new clinic I did what most of us do, ask a lot of questions in hopes they will be able to give us breadcrumbs to the solution. It felt like pulling teeth with this one though. She seemed mildly irritated with each question I asked. What she didn’t realize is that she was sitting in an interview for a position that can mean life or death. Not to be melodramatic, but that’s truly the reality of what I’m dealing with, the life of my future child.
I had high hopes for this young representative of this OBGYN office who my newly retired Reproductive Endocrinologist highly recommended. But my final question I posed to this fresh-faced doctor was what truly sealed her fate. It was basically a set up, I’ll admit, but I had to ask it to truly learn what I was working with. I asked her, “What do you recommend I do to improve my egg quality?” Mind you, I have recently done a massive amount of research on this subject this last year, from reputable medical journals and some of the most well-renowned books published on the subject, including the book “It Starts with the Egg.” I’ve already put into practice some of the medical advice on the subject.
“Well” she starts, “We are born with a certain number of eggs. We can’t change that. And sometimes miscarriages just happen. There’s nothing you can do about it.” I could tell she says this quite often. Her face was completely blank and her eyes seemed distant like she was trying to figure out what she wanted to order for lunch. Her words may have been consoling to someone who might be experiencing their first miscarriage, in fact I know I’ve heard this before from another doctor I stopped seeing years ago. When I get a gut feeling that a doctor isn’t doing everything they possibly can, I usually move on to the next one, as anyone should.
So what exactly was it about her response that pissed me off. Well she didn’t answer the question I actually asked her, for one. I asked about egg quality, not egg quantity. I know there’s absolutely no way you can increase the number of eggs you have. But I do know that there are studies on how to improve egg quality on the eggs that you have remaining, which can increase the odds of a live-birth. The problem with her answer to me is that she was either one of two things, 1) Not paying attention to my question, or 2) Uneducated on the correct response. To her credit, she contributed one solid lead for me to follow, with a different doctor of course. That lead was that she had looked through my entire file of many documents and found no MTHFR results.
Interesting, no MTHFR results. Could this just be an oversight on her part? I hoped this was the case. One of my Aunts recently told me she has the MTHFR gene mutation and she was telling other family members to get tested for it. Because of this, I decided I should double check that I truly am negative for the MTHFR gene mutation. If you haven’t already googled what the MTHFR gene mutation is, it’s essentially a mistake that occurs in how people process folate which can lead to a variety of complications, recurrent miscarriage being one of them. The doctor’s parting words were, “You don’t need to get tested for MTHFR. Just make sure you take a prenatal with folate.” Let me disect this response as well, firstly if I did have MTHFR, it’s recommended that you take methylated folate during pregnancy, which is often not found in your basic prenatal. And why the hell would I not want to get tested for MTHFR if I have a family history of it and I’ve had five miscarriages? Why would I not want to find that out? At that point I thanked her for her time and we both left the room quickly. I’m assuming for her it was because her stomach was rumbling and she needed lunch, and for me I left quickly because I knew I wasn’t going to waste another minute with someone who seemed disinterested in helping me. I later read in my infertility groups that many other women have the same experience of a doctor being dismissive of their request to test for MTHFR and that some patients really have to push doctors to get this test done.
I called back a few days later and asked the receptionist to patch me through to a nurse. “Can you see if I have been tested for MTHFR at all?” I wanted to know for absolute certain that I had not been tested for MTHFR, because I was questioning how thoroughly the doctor read through my file. The nurse on the phone scoured through my medical history, I know this because I could hear her turning the many pages of my file. Finally after about five minutes she said, “Well I see here you were tested for something similar to MTHFR, Factor Five. But nothing at all on MTHFR.” She even reviewed my genetic test called a Horizon panel, which tests for 274 different genetic carrier diseases that both my husband and I took years ago. The MTHFR test wasn’t in that one either. She asked if I wanted to come in to get tested for it and I agreed, but later decided not to show up, remembering the shitty experience I had with that doctor. I thanked the nurse for her time she put into carefully poring over my file. I decided to use this bread crumb of information to move ahead, but not with them.
Instead of feeling obligated to continue care with that provider just because my previous Reproductive Endocrinologist recommended them, I decided to call up my OBGYN I used for my past surgeries after I lost my pregnancies. He previously recommended I ask most of my questions to a specialist, a Reproductive Endocrinologist, because he didn’t have all the information I was asking about. But now that I have zero RE’s that are in-network, I decided to go back to his office to at least test me for MTHFR. So I stopped by, did a quick blood draw, and now I’m waiting for the results. I’ve been waiting about five days now and I called several times. They said it takes a bit longer to get that specific test back.
If I have MTHFR I can get set up on a treatment plan. If I don’t, at least I can finally rule that out. I feel I have a right to be angry, I was told I was tested for it but I really wasn’t. My second RE even asked me, “Have you been tested for MTHFR?” as she was looking through all my documents. I told her I was tested and found to be negative, because I was going off what my first RE told me. My second RE stopped searching through my file after just a few pages and took my word for it, she should have looked more deeply into it. Admittedly, my file is quite intimidating. It’s about as thick as a 500-page novel. Maybe that’s why she decided to stop short. There were a series of oversights along the way, and that is what bothers me.
I believe this is not just a personal issue either. I feel that if this can happen to me, it is also happening to some of you as well. What would I have done differently if I were to do it over again? I would have examined my own copy of my file yearly, looking for any gaps in testing. But in the beginning you trust your doctor, you trust the process, and you believe you are doing everything you can. But doctors make mistakes, sometimes major mistakes. Sometimes you can’t take their word on something and you need to see it in writing in your hands. I wish I would have asked to have a copy of the test results and actually see the words MTHFR Gene Mutation on the paper. But that paper doesn’t exist because neither did the test.
Throughout this whole process I’m learning to do my own research and take initiative. Because if you just go with the flow of whatever the doctor says you may end up so far away from your solution. Speak up and ask for the testing you need. If your gut tells you, “They don’t know what they are doing” listen to that instinct and find someone who at the very least listens to you. Because if they truly listen and still cannot help you at least they can hopefully point you in the direction of where to go instead.
I will let you all know as soon as I get the results from my MTHFR test. For now, I’m considering seeing the highly recommended RE that is not in-network with my insurance. Perhaps she has some advice that can actually help me achieve my dream of having a baby. I told myself I would pay off my debt first before I go down and do the Frozen Embryo Transfer in Seattle. I still have a good chunk of debt left to pay that feels like it’s turning into a Whack-a-Mole game, pay off one bill only to have another equal or more expensive one appear in my mail. I’ll get there eventually.
I’m still exhausting every single possibility of trying to have a biological child. So for all of my family and friends saying, “Why don’t you just adopt?” or “Why don’t you just foster?” I humbly say to you, in time I will, but I don’t want to split my energy in different directions right now. I want to focus on one thing at a time. Some acquaintances I meet ask why I don’t have kids yet. I don’t feel obligated to give them my medical history so instead I give them the canned response of “We’re trying.” The more brazen acquaintances then jokingly say, “You don’t have much time left. You better get on that.” It’s at this point I imagine myself as Mike Tyson punching the shit out of them repeatedly in their smug face, and maybe biting a piece of their ear off for good measure. I’m joking, sort of. But unfortunately they have a point. I’m 33 and I don’t have much time left, which is compounded even more so by the fact that I have Low Ovarian Reserve. So right now this is my focus and I’m doing everything I can.
Thank you for reading.
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