Disclaimer: I am following some of the advice from this book. I spoke with my medical providers prior to changing my own individual treatment plan. Please speak with your medical provider about your own treatment plan prior to trying any suggestions from this book and whether you would benefit from those suggestions or not.
Have you been trying to conceive for more than one year? Have you had more than one miscarriage? It’s possible you may have a genetic mutation and not even know it, and it’s more common than you might think. “About 30 to 40 percent of the American population may have a mutation at gene position C677T” (Healthline, 2019). I have a MTHFR gene mutation at C677T, so I am apparently in good company with the rest of the world. In Dr. Ben Lynch’s book “Dirty Genes: A Breakthrough Program to Treat the Root Cause of Illness and Optimize Your Health” he shares information about some of the most common genetic mutations or “snips.” Dr. Lynch is a molecular biologist and has a genetic mutation himself, the MTHFR gene mutation. His personal experience combined with his academic findings motivated him to write this book and share his knowledge on the subject.
It is important to note, there are those in the medical field who are dismissive of Dr. Lynch’s medical claims, mostly on the basis of there not being enough studies yet on the subject as well as how a large portion of the population has at least one genetic snip. Some patients may be told by their doctor, “Many people live with a genetic mutation” or “You don’t need to be tested for it.” But I personally believe knowledge is power. If you are having unexplained infertility and recurrent miscarriages, you should definitely consider genetic testing. Why have genetic testing? Because you may actually have a genetic snip and you may benefit from certain supplementation or diet changes.
After I confirmed I had a MTHFR gene mutation through my OBGYN’s test, I learned that the folic acid in most prenatals I was taking can actually block the activated form of folate that my body needs. So now, instead of folic acid, I take a methylfolate supplement. My RE, OBGYN, and Dr. Lynch’s book has all pointed me in that new direction, away from folic acid and instead to take methylfolate. As far as natural forms of folate, dark leafy greens are really important if you have an MTHFR snip. Not to mention, most people should eat dark leafy greens anyway. I am still in the beginning stages of learning about my gene mutation. But I am hopeful the new lifestyle changes I’m making, in part from reading this book, might help me to possibly have a child in the future.
This post may contain affiliate links. You can read the disclosure here.
This post may contain affiliate links. You can read the disclosure here.
My husband and I were debating whether to do the Anora test from this pregnancy loss. We’ve done the test before with two of our other miscarriages. Both of those tests determined that the embryos had a chromosomal abnormality caused by maternal origin. One had Trisomy 15 and the other had Trisomy 16. My other miscarriages we did not test. At first he and I were leaning towards not doing the test for my most recent loss this September, because we assumed it would be the same exact scenario of a Trisomy due to maternal origin. We believed it would have been a waste of time and money. But my doctor had a good reason to try to talk us into doing the test again.
Now that we have recently found out I have the MTHFR gene mutation, my doctor wanted to determine whether this embryo had a chromosomal abnormality. He said, “If the embryo does not have a chromosomal abnormality we might have you try Lovenox.” Lovenox is a medication used to help during pregnancy for women who have a MTHFR gene mutation. He said that he would talk to my out-of-state doctor as far as the next steps after the Anora results.
When my doctor called me several days later with the results he said, “It was a triploidy of paternal origin.” This was the first time my egg quality had nothing to do with the chromosomal abnormality.But unfortunately, now we also have a chromosomal abnormality issue from my husband’s side (paternal origin). So I’m unsure whether I will still need to take Lovenox or not as a precaution with my next pregnancy. That’s one of the questions I need to ask him. He explained there were two YY chromosomes in this embryo, in other words two sperm had entered one egg. I remembered that the clinic I went to just prior to my current doctor believed this pregnancy was either one of two things; 1) pregnancy with multiple embryos, or 2) a molar pregnancy.
But he confirmed this was not a pregnancy with multiples, and that it could be a partial molar pregnancy. A molar pregnancy is bad for several reasons. I was feeling very overwhelmed because I had done prior research and understood that molar pregnancies could cause some serious complications. Even with the D&C surgery, it is possible the partial molar pregnancy could have already triggered issues in my body.
A partial molar pregnancy, from what I understand, is when the cells of the baby can mutate within the mother’s womb and cause tumors within the uterus. The worst case scenarios for a molar pregnancy is permanent infertility and/or cancer. Even as I am writing this now I paused my typing for a few moments and I feel a sense of dread. Two terrible possible outcomes. So why does my doctor think it might be a partial molar pregnancy? He said one of the possible complications of a triploidy of paternal origin (the results of my Anora test on the embryo) is a molar pregnancy. And one of the possible complications of a molar pregnancy can lead to something called Persistent Trophoblastic Disease (PTD), which is caused when tissue from a molar pregnancy isn’t completely removed.
Image of normal conception compared to complete mole and partial mole. Partial mole shows two paternal sets of genes resulting in in non-viable fetus.
PTD can lead to Gestational Trophoblastic Disease (GTD) and this can lead to Choriocarcinoma which is a fast-spreading cancer that starts in the uterus. Needless to say I’m feeling overwhelmed. I asked my doctor how they would know if it was a partial molar pregnancy and he said, “We have to check your blood levels weekly to make sure your hCG levels are dropping back down to zero. If they don’t drop down to zero within a few weeks it could indicate a partial molar pregnancy.”
I did some research about molar pregnancies prior to talking to my current doctor, the reason being that my previous doctor said, “It’s either multiples or a molar pregnancy.” With a molar pregnancy the hCG level rises so dramatically it can be mistaken for a pregnancy of multiples. My first doctor said my hCG level was 81,000 when a normal range at that time would have been around 3,000. Clearly my levels were very high.
So there is a very real possibility that I might have to deal with the after effects of a partial molar pregnancy. It’s already affecting my plans. I was planning to do my Frozen Embryo Transfer (FET) in December 2019. I was going to do the Saline Infusion Sonohysterography (SIS) procedure to make sure my uterus was good to go with no abnormalities and then be jetting off to my procedure in Seattle. My doctor said, “Unfortunately both [doctor in Seattle] and I think that it would be best to postpone your FET until we rule out a partial molar pregnancy. Two months is just not enough time to figure that out. We will need to do weekly blood draws until your hCG drops down to zero. Once it drops down to zero we will need to monitor your blood levels each month for six months. He and I think that you should wait at least six months before you do the transfer.” Some websites suggested waiting 6-12 months before trying again. The risk of doing it too early is it could trigger the cells to become cancerous. So at the earliest I could do my FET in April 2020.
I have my 2-week post-op doctor appointment here on Thursday. I’ll be doing my first weekly blood draw on that day. My doctor will also be putting me on birth control for a while, I’m assuming until I am ready to start my FET protocol which could be anywhere from 6-12 months from now. My little embryo has been waiting so long already and I hate to think that it has to sit even longer. But like my doctor and I agreed over the phone, “It’s better to be safe than sorry.”
I’ve had so much bad luck over these years I’ve come to expect it. I suppose it has become a defense mechanism of sorts. “Hope for the best but expect the worst.” Part of me feels like if I don’t expect the worst then I won’t be mentally prepared to handle it when it comes. Like with this situation for example, I was already learning what molar pregnancies were before my current doctor said this is what we might be dealing with. Initially I was very overwhelmed after that phone call. But what can you do? You just have to follow the doctors orders and learn what you can online about whatever issue you are dealing with. If there is nothing you can do about the situation in that moment you just have to let it be. Personally, I think it’s better to do research shortly before meeting with your doctor so you can at least be prepared with certain questions. By doing that closer to your appointment you are less likely to sit there stewing on potential negative outcomes. Granted, I am saying this about a diagnosis that has not been confirmed as cancerous. I believe if I was diagnosed with cancer I would probably be researching every corner of the internet to figure out how to get rid of it. But for now, I am trying to guard myself against “worst-case scenario” thinking. The best way I know how to do that is to distract myself.
I’ve been listening to my audio book and watching TV lately as a distraction. Maybe I’ll listen to my audiobook while I clean the house. My house could use a good clutter clean, deep clean, and every other clean in between. I suppose that would help me take my mind off of this too. I think it’s so important to lean on healthy coping skills during the times that we are worried about the future. Beyond distraction comes acceptance, learning, and healing. With each new obstacle that comes my way I choose to remain determined to keep moving forward and do everything I can to create our family. I want to look back on these times and know without a doubt I did absolutely everything I could.
Even without the ultrasound tech saying a word I knew something was wrong. There was no pulsating heartbeat like I saw with the last ultrasound. It was just complete stillness. My doctor and nurse seemed to be feeling the weight of sadness for me, they said they were sorry to see me going through this. I cried a little bit in the bathroom after the ultrasound, but then focused on what needed to be done afterward. I held it together while I was still in the office so I could think clearly enough to ask the questions I needed to.
The ultrasound tech said the baby stopped growing around the 9th week based on their measurements. On the bright side, this is the longest pregnancy I’ve ever had. So maybe it being nine weeks could be attributed to some of the changes I’ve been making with how I eat and the supplements I’ve been taking. Unfortunately I didn’t find out I was positive for a MTHFR gene mutation until a couple weeks ago. Maybe had I known I could have started the Baby Aspirin sooner and maybe it would have protected this baby.
My doctor highly recommends I do the Anora genetic testing on the baby to see whether it had a chromosomal issue. If it had a chromosomal issue, there’s nothing that could have prevented it. But, if it is chromosomally normal this may help determine whether I need to be on the medication Lovenox. In other words, if it’s normal maybe medication is what I need to prevent this from happening again. My geneticist said that with my particular type of gene mutation I do not need to be on Lovenox, but I’d like to get my Seattle doctor’s opinion. My local OBGYN says he communicates with the doctors at Seattle Reproductive Medicine (just like my prior Reproductive Endocrinologist). He said he will ask the question regarding whether Lovenox might be needed for my next pregnancy. My local doc seems to be on the fence about the Lovenox. I’ve also heard that some women with my issue also take progesterone, even if their levels show normal. I think I will also ask my Seattle doc this question too. I need to do my own research as well.
I have to have surgery Wednesday, due to this being a “missed miscarriage.” My doctor advised me to cancel my trip to Denali I had planned for the weekend. I’ve been dealing with some cramping, no bleeding yet, and still very nauseous. The most worrisome symptom have is that I feel like I’m going to pass out several times a day. The other day I was in the shower and all of the sudden my upper body felt really heavy and weak. My vision started to go black from the outside moving inward to where I could hardly see. I got out of the shower and lied down right away. I ate breakfast before my shower with two cups of water and some juice, so I had enough in my stomach. In hindsight, each of my miscarriages I felt this same way, like I was going to pass out or like I was incredibly dizzy. I asked my doctor about this and he said it could be due to the dropping levels of progesterone from the miscarriage. He suggested I eat small and frequent meals throughout the day and drink plenty of water to prevent this.
As far as how I’m handling it emotionally, it hasn’t been easy. But I decided to take a week off work for several reasons; 1) I don’t want to start miscarrying while I’m at work, 2) I need several days to recover from the surgery, 3) I need to take this time process the loss before I jump back into work. Based on my past experience with missed miscarriages and surgeries, taking a week off seems to be the perfect amount of time for me to move on physically and emotionally. With my very first loss I needed two weeks, mostly to deal with it emotionally. I suppose I’m bouncing back faster than I used to.
Honestly, at first I was inundated with all the “should have, could have, would have” thoughts. It was overwhelming to think about all the variables I could have adjusted, and maybe this wouldn’t have happened. If you are going through a difficult situation like myself, I think it’s incredibly important to not place blame. It took me so long to come to this realization. Don’t place blame on your doctor, don’t place blame on God, and don’t place blame on yourself. The sheer amount of negative energy that comes from those thoughts can make you become blind to possible answers that can lead you in the right direction. Blame closes off opportunities, whereas acceptance can bring clarity. By acceptance, I mean accepting what you are dealing with right now in this moment and moving forward.
The other day I visualized myself standing at a fork in the road. I could take the dark, bleak path or I can choose the more vibrant path. The dark path is depression, confusion, negativity, and feeling stuck. Whereas the brighter path is gratitude, strength, inspiration, and growth. Admittedly, I was already in motion toward the darker path. But instead, I made the turn and began walking the brighter path. You can also choose the direction of your journey, no matter how far down the dark path you find yourself, you can always turn it around. Yes the outcome with each pregnancy may be out of my control, but what is in my control is my perception. Some people have told me I should maybe give up trying to have a child. But there is something inside me that says, “No way! Not yet.” It’s like a fire that is still going strong inside me, despite everything that has happened. As long as that fire is still burning, I’m going to continue this journey.
PLEASE READ FIRST: Although this pregnancy ended in a miscarriage, I still wanted to share my experience of this pregnancy. I wasn’t ready to talk about my pregnancy as it was happening, so I wrote this entry prior to the date it is posted.
Right now I’m in the middle of my 10th week and feeling extremely tired and nauseous. I threw up only one day so far, but six times in that single day. I’ve learned that I need to be constantly snacking on things every 3 hours or so in order to prevent nausea. Saltine crackers first thing in the morning has really helped me. I think that I do feel the worst in the morning but it doesn’t go away during the rest of the day either. My husband bought me some ginger root and ginger ale that I think has been helping me. I’ve been making ginger tea out of the ginger root.
I’ve never felt this tired in my life. Just totally wiped out and have zero motivation to get anything done around the house. If I’m not at work I’m a total couch potato at home. Speaking of potatoes, I’ve been craving them constantly! I must have some form of a potato daily. I haven’t been able to eat an entire meal lately because of the nausea, mostly half meals or smaller.
Started Methylfolate at beginning of pregnancy and Baby Asprin more recently.
Last week I was waiting to hear back from the geneticist about whether I should take Lovenox and if there was anything else I needed to be taking for my specific type of MTHFR gene mutation. She said that I do not need to take Lovenox and that Methylated Folate and a Baby Aspirin should work fine for me. Please speak with your doctor about your specific treatment plan, don’t just follow mine. My geneticist talked to me about my particular MTHFR gene mutation, C677T heterozygous single variation, and said, “It’s fairly benign” and “it’s actually pretty common, with as many as 50% of the population having this kind.” I’ve heard this statistic about a large part of the population having it, but it was the first time I was told it was “fairly benign” which I guess is a good thing, but if it’s the main contributor to all my miscarriages I would not categorize it as “benign” at all. One of the definitions of benign is “not harmful.” I’d say this is pretty damn harmful. I guess we will find out for sure whether my Methylated Folate and Baby Aspirin is what finally makes the difference with this pregnancy.
First ultrasound from week 9 of pregnancy. Looks like a little blob, but ultrasound tech showed me the head on the right side. Heart is beating strong at 155 bpm.
I have my ultrasound this Friday and I am kind of stressed about it, most of my past ultrasounds are always bad news. I feel like I will absolutely be blown away if my pregnancy is still continuing to be healthy. I’m still shocked that I’ve made it to week 10 without any issues other than feeling nauseous. This is the first pregnancy where I’ve been incredibly nauseous which I hear is a good thing. One other difference about this pregnancy is I haven’t spotted at all, which I did in all my other ones I miscarried.
I decided to let my two supervisors and HR know about my pregnancy. It’s a little earlier than I was planning to do after the first trimester. But because I’ve been feeling so cruddy and it’s been somewhat affecting my work performance, I thought it would be better to speak up about it. I’m glad I did because shortly afterward one of my coworkers confronted me about not helping with a cleaning project. I felt like every smell in the building was about to make me projectile vomit. I figured by the end of the shift I’d start to feel better but I didn’t. So my attempt to clean would most likely have ended up with me also cleaning up my vomit. I figured some people would be grumpy with me not doing everything I normally do, but I’m not ready to announce my pregnancy. It just feels too early for me. Part of me wants to explain why I can’t lift heavy things and why I seem very immobile these days, but I want to protect my privacy a little longer from my coworkers.
Even if this ultrasound on Friday shows that everything is perfect, I’m still hesitant to share the good news. Although I originally planned to announce to everyone at the end of my first trimester, I kind of like keeping this to myself right now. If I lose the baby I’ll have to explain to so many people about it. And even if everything goes well, I don’t really want people asking me a lot of questions about the pregnancy. For now at least, I’m just not ready for that. I’m considering keeping it to myself until I start to show. I even had the idea to wait long enough until I’m clearly showing, then place my bets on who will ask me if I’m pregnant first. I think I might find that kind of entertaining, plus it will buy me some time to keep it to myself a little bit longer.
PLEASE READ FIRST:Although this pregnancy ended in a miscarriage, I still wanted to share my experience of this pregnancy. I wasn’t ready to talk about my pregnancy as it was happening, so I wrote this entry prior to the date it is posted.
I’ve decided this pregnancy needs to stay a secret from pretty much everyone until I at least pass my first trimester. This is proving to be difficult while I continue to write posts about other things going on simultaneously. For example, while I was waiting to get tested for the MTHFR gene mutation and when I got my results what I didn’t tell you all is that I was mostly there for testing my HCG levels because I was pregnant. Sneaky, sneaky. I so wanted to share the news because I was so happy but I ultimately chose to wait because I wanted to not deal with the questions I would get. I tend to be OCD at times and I overly research the s**t out of things enough as it is with this pregnancy, almost to the point of neurosis. So I really didn’t want to have the added stress of other people’s questions and worries on top of my own. For this pregnancy it was more of a strategic stress management decision. I wanted to reduce my stress as much as possible. I’ve decided to keep this news to myself until I feel comfortable to share it, which in all honestly will probably be sometime during my second trimester.
I just got off the phone with the office of my geneticist. My OBGYN doctor referred me there since I was found to be positive for the MTHFR gene mutation. So my geneticist’s office has been playing phone tag with my OBGYN office and apparently didn’t have a clue why I was referred to them. So I had to explain to them that I was pregnant, had the MTHFR gene mutation and needed to find out ASAP whether I should be taking Lovenox or not. So I’m still waiting to hear back. My OBGYN didn’t seem too sure whether I should be taking a Baby Asprin or not, so I decided to continue taking it since I’ve read that it probably wouldn’t do any harm if I took it but didn’t need it.
As far as how I’m feeling, well imagine that every ounce of life has been zapped from your body and that’s pretty much what I’m feeling. I have zero energy, and I mean zero. It takes a decent amount of energy just to get up and get something to eat. I’ve been parked in front of the TV so much my body aches until I force myself up and stretch while I reach for a small snack. I’ve been eating like a bird, very small amounts but frequently. I’m eating frequently because my nausea has been absolutely terrible and the only thing to keep it at bay is to have a little snack in my stomach. I don’t eat full meals much, and if I do it takes me forever to eat it all. I definitely have morning sickness when I wake up. Needless to say Saltine crackers have become my new best friend. We bought a Costco sized box of twelve sleeves of crackers which will probably last me just a couple weeks.
Positive Pregnancy test on July 26th.
A couple years back I was eating a snack at work and my coworker’s face lit up and she said, “Oh my God! You’re pregnant!” I was so confused how the comment came seemingly out of nowhere. “Uh, no, just hungry. I haven’t eaten yet today” I said. She pointed to my snack as if I should have known I was pregnant just based on what I was eating. I was so confused and asked her why she thought I was pregnant. She explained that I must have been because I was eating Saltine crackers and that no one eats Saltine crackers unless they are pregnant. I explained to her that I like salty snacks and that I figured it was better than potato chips. It took a while to convince her that I was not pregnant. Knowing that some people so strongly associate these crackers with pregnancy is going to be a problem for me while I try to keep my current pregnancy under wraps. They are the only thing keeping me from being barfy. Granted I no longer work with that person, but I am a terrible liar and need to figure out how to maneuver around this possible question. Mamma needs her Saltines!
As far as emotionally, I’m excited that this pregnancy has been going well so far. I’ve had no problems at all other than some random sharp pains. But my baby’s heart is beating well and it’s measuring perfectly on track with the ultrasound. Kurtis had to work that day so I’m hoping he and I will be able to actually see the heartbeat the next time we are there. And maybe we can actually make out some body parts instead of it appearing like a blob where it’s hard to even tell where the head is. I’m counting down the days. We are doing the appointment and ultrasound on Friday the 13th. I hadn’t really thought that one out, but I figure with the terrible luck I’ve had in the past maybe I should play the “opposite game” and stick with that appointment date. Maybe our little one will be just as healthy and strong as it was with the first ultrasound but bigger.
I’ve been using the Ovia Pregnancy app on my phone. I love that app because it gives an adorable cartoon rendition of what the baby looks like at each week of the pregnancy. It also tells you what size the baby is, mostly in fruit, but this week my baby is the size of a southern pecan according to the app. It even shows you the actual size of the baby’s hand which really adds to the cuteness factor and will make anyone go “awww.”
As much as I want to be in the moment I also really want this first trimester to fly by, so I can feel some sense of security knowing the miscarriage risk is lower. I know you can lose a baby at any point during the pregnancy. But to get past the first trimester would be amazing and surreal, because I’ve had that chance. Even now, when I think about how this time next year I could be cuddling with my baby, it seems very surreal. The best way I can describe it is when you have such a strong dream in your heart, but you’re told it will never happen, and then way later down the road it suddenly becomes a possibility. It’s hard to fully embrace that reality when you feel like it can be ripped out from under you at any point. But I still carry on and try to stay optimistic.
Finally my doctor called when I was in a Wendy’s drive through with my Mom who was driving, I was visiting her that day. I had my phone up to my one ear, and my finger in the other ear trying to block out all the unusually happy workers inside who were all laughing hysterically about something for what seemed like five minutes straight while I was on the phone trying to hear what he was saying.
“You tested positive for the MTHFR gene mutation,” he said. He went on to explain some details that I wasn’t able to grasp in the moment, probably due to a combination of not hearing him and not actually processing all the info. I had to call him back later to actually write down what he was trying to explain to me. He said I have the “MTHFR gene mutation C677T heterozygous single version.” He thinks that some of my miscarriages may have been caused by this gene mutation. Essentially, when you have a MTHFR gene mutation your body cannot process folate well, which is an incredibly important vitamin that helps the baby grow properly.
I had very conflicting emotions with this news, mostly a combination of anger and relief. I was so angry that none of the doctors had realized this earlier, and that one doctor mistakenly told me that I was negative for this gene mutation when she really meant to say I was negative for Factor Five. So I went on to tell my next doctor and several other medical teams I was working with that I did not have MTHFR, going off what she had told me. Sadly, none of these doctors thoroughly looked into my file. Had they done so I may not have had to deal with 2.5 years of five miscarriages and paying for IVF.
I’ve heard stories of women who’ve suffered through many miscarriages before their doctor tested them for MTHFR gene mutation. When they discovered they had it, they were put on the proper medication and vitamins and boom…they have a healthy baby in their arms. I pray it will be that simple for me as well, but I also have Low Ovarian Reserve so it probably won’t be that easy. On the other spectrum of my emotions, I am feeling so much relief knowing that a huge missing puzzle piece has finally been found. But to be honest it is going to take a while to get over my anger. I think in time I will get over it, but right now it is pretty difficult.
I sat at Mom’s dinner table and talked about the news with her. She was the one that had mentioned to me several months back my Aunt has the MTHFR gene mutation. This perked my ears up because I remember hearing that acronym as part of the fertility tests I thought I took early on. I explained to Mom, “Had you not told me that, I would not have double checked that I actually got tested for it.” Mom got kind of teary eyed and said something to the effect of, “I didn’t even realize that was something related to fertility.” In other words, Mom had no clue the wheels she had set in motion for me. But I’m glad that she did. I’m also glad that my Aunt spoke up about her medical issues that were caused by the MTHFR gene mutation. Those conversations led me to my diagnosis that could help with my fertility, and ultimately help me to have much greater odds of having a baby.
I am brand new to this diagnosis so I have much to learn about it. I’ll probably do informational posts on it in the future. One thing I mentioned to my Mom is that I learned the MTHFR gene mutation has been correlated to some cases of cancer. So my diagnosis has sparked her curiosity into whether she may have the MTHFR gene mutation as well. She has beat cancer twice already and is the strongest woman I know. She said she would look into testing. It’s kind of surreal to finally have a concrete answer as to why I have recurrent miscarriages, and even more so surreal there may be a simple solution of medicine to help me. My OBGYN referred me to a geneticist that I should be seeing soon. Maybe next year we will finally have our little one.