When you have infertility, fertility treatments are a gamble. You have no idea what your outcome will be, and neither does your medical team. They can make predictions and might be able to turn the tide a certain way somewhat, by adjusting your handful of medication dosages up or down. But ultimately the outcome is really unknown until it’s all done and over with and you are looking at the answer in your hands with a pregnancy test. In exactly 48 days I will know whether I am pregnant or not. That’s as long as no wrenches are thrown into the plan, and we all know how wrenches love to fly into my plans. I just need to be like Neo in the Matrix and slow-mo bend out of the way.
Catch-up on Previous FET Prep Posts
FET Prep Week 1: 3.5 months until FET
FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level
FET Prep Week 3: You say Future Tripping, I say Future Planning
FET Prep Week 4: Bad News from SIS Test
FET Prep Week 5: Surgery, Depression & Trip to Nevada
FET Prep Week 6: Relax! You’re on Vacation.
FET Prep Week 7: Food Plan, Medical Debt, Post-op Follow-up, & Imagining Motherhood
FET Prep Week 8: Migraines & Some Good News
FET Prep Week 9: A Tough Decision
FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns
FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide
FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19
FET Prep Week 13: FET Scheduled After Clinic Partially Reopened
FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions
Countdown Until FET: 32 days (as of 5-31-2020)
Should This be Happening?
At the beginning of the week I had really bad cramps, to the point where I was crying in pain. This is unusual for me. Most of my life my cramps during my cycle were mild, compared to how my friends described theirs. If I could count the number of times my menstrual cramps were severe in my life it would only amount to what I could count on one hand. So this out-of-nowhere awful as hell cramping threw me for a loop. About a day or so afterwards I had started my period. Wait…what!? I thought I wasn’t supposed to be getting my period at all while I was taking these birth control pills to down regulate me. I had heard there may be some spotting, but nope, this was definitely Aunt Flo.
At first I thought my body was just being a rebel and randomly starting my period. But when I looked at my Ovia app, where you can track your period, it turns out my body was almost right on time when my natural cycle would have started. I’m concerned my body is not responding the way it should to the birth control. If my body isn’t doing what the doctors are trying to get it to do, there’s a chance they will cancel my embryo transfer.
Part of me wanted to email my nurse and ask her, “What does it MEAN? Will my embryo transfer get cancelled now?” But I decided to let this one go. I’ve already asked my poor nurse a question about every other day. And when I thought about it, there’s nothing they can really do anyway, it’s not like they can increase the birth control. According to my calendar my nurse made for me I should start my period several days after I stop my pills, which is scheduled to happen here in a few days. Best case scenario is I will have two periods in one month, which is such a weird thing to hope for. But in my situation that’s looking like what needs to happen.
It all comes down to the suppression check. It’s at that time I will get a for sure ‘yes or no’ on whether my body is doing what it needs to do. If you don’t know what a suppression check is, it’s an ultrasound where they look at your uterine lining, and whether you have any follicles or cysts. In the past I dealt with cysts that threw off my egg retrieval schedule. If they find a cyst over a certain size they may ask you to do a blood test to see the cyst is functioning or non-functioning. If you have a functioning cyst this can interfere with how your body reacts to the medicine they give you. But if you have a non-functioning cyst some doctors will proceed as normal with your medications and your timeline won’t be affected. I’ve even had some friends where their cyst did not go away and they ended up needing surgery. Everyone is different.
I’m looking at my orders from my clinic for my sonographer, and it says if I have a cyst over 10mm the sonographer needs to let me know, so I can get a STAT order of my estradiol blood levels sent to my clinic. I called my OBGYN’s office and they could not guarantee same-day results. My clinic in Seattle recommended I do it at the hospital’s main lab. I confirmed with the hospital they are able to do same-day estradiol lab results.
I’m hoping all goes well with my suppression check on June 10th. I’ve always imagined the suppression check as the starting line of a race. I hope nothing gets in my way because I am so ready to get started! At the same time there’s the pragmatic part of my mind that is trying to temper my excitement, it says, “Girl, you’ve had cysts in the past and your timeline has been thrown off several times. You know nothing goes according to plan with your body.” True, true, and true again. Damn it brain. At best my schedule will not be thrown off, at worst it will drag on. Time will tell.
To Lovenox, or Not to Lovenox, that is the question.
I was checking out some infertility forums, which I haven’t done for a while. One lady said that she also has the MTHFR gene mutation and has had four miscarriages. She said once she was put on a combination of baby aspirin, methylfolate, and Lovenox. She said she was finally able to finally carry a baby to full-term and had a healthy baby girl. I’ve heard this same story over and over again with other women with the MTHFR gene mutation who have been put on those medications and were able to have a baby. From what I understand, if you have a MTHFR gene mutation you have a difficult time processing folate and therefore are not getting enough nutrients. If you are not getting enough nutrients the odds of having good hormone levels and healthy, happy follicles in the ovaries, well these odds are not so great.
The science behind MTHFR gene mutations and its effect on fertility is still somewhat new. But I am ready and willing to see if treating my MTHFR gene mutation might have a positive effect on my fertility. I am a guinea pig for science, by choice. The studies of this gene mutation are still so new that most doctors are not implementing changes to treatment. In my case most of my doctor didn’t even know what I was talking about at first. Needless to say it’s a strange experience having to tell your doctor why you think you might be having recurrent miscarriages, because they are at a complete loss of what to do. But I am not at a loss, I still have hope. And for the first time ever, I might have the medicine I need to get on the right path for not miscarrying.
I’ve mentioned my MTHFR to my clinic in the past, asking what vitamins they would recommend. But I didn’t think to ask about prescription medication at the time, because I didn’t realize there was one. I feel like they gave me a cookie-cutter answer and said, “A prenatal and eat a healthy diet.” Yeah…but…most prenatals have folic acid which is the exact opposite of what I need for my gene mutation. I need a prenatal with methyl folate. Even I knew that, but they didn’t tell me this. It makes me wonder how many other patients with MTHFR they are telling to do this and are having poor results. They didn’t even suggest baby aspirin, which is a go-to recommendation for it. I wish they had more knowledge and specialized treatment for patients with MTHFR at my clinic, because I feel like I may be missing out on the best treatment possible.
So the other day I posed another question to my clinic:
“Since I was diagnosed with the MTHFR gene mutation a while back I had heard that some women with this take Lovenox during pregnancy. I asked Dr. X (my OBGYN) a while ago whether I should take Lovenox he said I should ask your clinic. Given my six miscarriages and my MTHFR gene mutation, does Dr. Y think I should try Lovenox possibly? Could this help prevent miscarrying if I do get pregnant? If so, when should I start taking Lovenox if it is recommended? I’m willing to try it, even if it only slightly increases my odds of a successful pregnancy. Thank you.”
I’ll see what they say, but given their reservations for anything beyond a prenatal, it’s looking doubtful they’ll want me on Lovenox . I’ve heard some women online who are adamant that they were finally able to have a baby after repeated miscarriages and they feel this is mostly owed to being on Lovenox during their pregnancy to keep from miscarrying. I’m not sure what I will do if they tell me ‘no.’ If they say no and they have a really solid explanation as to why, I think I will consider this. But if they say no and not really back it up with an explanation, I feel like I would need to get a second opinion.
Where I will get that second opinion, I’m not sure. We have a grand total of zero reproductive endocrinologists in Alaska, since mine retired over a year ago. My OBGYN has told me that he does not specialize in this area and was not sure. I think what I might do is if my Seattle clinic says no to Lovenox, then I will ask another doctor’s office. Time is of the essence, I have about one month left to decide whether to get on Lovenox and to figure out which doctor will prescribe it to me.
It may seem like I’m trying to circumvent my fertility clinic’s recommendations, but can you blame me? I have had six miscarriages, two rounds of IVF and only one embryo. The stakes are high, and I am fed up. Conservative treatment plans are out the window at this point. Done. D-O-N-E! I am now into the ‘by whatever means necessary’ phase. If I need to try alternative treatments like dangle upside-down by my feet while getting hit by a bundle of plants while chanting positive affirmations I will do it (and yes, this is totally a thing). Because, why the hell not? Everything else I’ve done hasn’t worked. I think it’s time to put the pedal to the metal and think out of the box.
So what does a more realistic out-of-the-box treatment plan look like? In the future I plan on doing treatment with CNY. I’ve heard they incorporate both western and eastern methods to improve infertility. They seem to take a more holistic approach. Their office seems to be focused on Keto which is definitely different from what my current clinic is saying. Different is looking pretty good at this point, because doing the same thing over and over again is the definition of insanity. If I am lucky enough for my upcoming embryo transfer to work in July, I am hoping to give this baby a sibling with the help of CNY in the future.
High Anxiety from Methylfolate
Methylfolate is great for those with the MTHFR gene mutation and who are pregnant or trying to conceive. But this amazing supplement is not without its downsides. I re-read “It Starts with the Egg” by Rebecca Fett as a refresher for this embryo transfer. There is a section on methylfolate and how she recommends further reading in the book “Dirty Genes” by Ben Lynch (also a good book). I’m glad I took the time to go over this section again because it helped me to have an epiphany. I thought my recent high anxiety was due to my birth control, but it was reaching very very high levels, beyond what it normally was in the past. Part of me chalked this anxiety up to COVID and worrying about traveling during COVID for my embryo transfer.
But even when I wasn’t thinking about COVID, or my FET, or thinking about anything really, I felt like I was having incredibly high amounts of anxiety for no reason. I’d describe this feeling as if you drank six cups of coffee, you feel your heart pounding non-stop and you are insanely edgy. There’s been more fighter jets flying over my house lately in the morning. “They are going to crash into the house! I just know it!” my mind shouts out to me. Just imagine every plane that flies over is going to crash into you. Then the trains that go by your house are going to derail. The person you hear walking outside on the sidewalk is surely going to break into your house (granted we did have a breakin last week at my neighbors). Every minor fear has been way blown out of proportion with this insanely high amount of anxiety I’m feeling. It was a consistent high anxiety over these past couple weeks.
But in “It Starts with the Egg” it mentions that some people with the MTHFR gene mutation who take methylfolate can have the side effect of high anxiety. Then I looked at minimum dosage recommendation for the supplement 5-MTHF (methylfolate) before embryo transfer, which was 800-1000mcg. Then I converted the dose I was taking from milligrams into micrograms. Oh snap! I’m taking five times the recommended minimum dose, no wonder I am stressed the f**k out over little things. I tend to be more sensitive with medications anyway. Although there is a wide range of dosages that are perfectly acceptable to take, I am realizing that I should probably stick to the lower end. In some cases people can take up to 15,000mcg. So it really varies and you need to adjust your dosage specific to your needs. On a lighter note, before I had this epiphany, Kurtis got some amusement out of the situation by making TikTok videos where he scares the crap out of me.
I also read in the book that taking B12 in addition to 5-MTHF can help reduce anxiety. If I don’t see much difference taking the B12 along with it, I’m probably going to cut my 5-MTHF pills in half. I don’t want to waste those pills. My doctor said it was okay to take the 5mg (5000mcg) dose and recommended it, but at a minimum I need at least 1mg (1000mcg). So if I’m still super edgy I will drop down to the minimum 1mg.
Mini Victories for the Week
Bought vitamins I was out of.
Re-read “It Starts with the Egg” which helped me to realize my one supplement may have been the culprit to my high anxiety.
Work in Progress
Reduce anxiety, most likely due to high dosage of methylfolate. Trying B12 to counteract it, but may need to reduce the dose of methylfolate.
Advocated for myself by asking my doctor about Lovenox, waiting to hear back his response.