IF Testing & Treatment w/o 3.14

mambo5-2

Guys... I may be very mad.... my freaking blood... DOESN'T want to clot.  I am going to be so mad if this tiny little blood test that could have been done 10 years ago is why I *TW* miscarry *TW* all the time. 

anniemarie887

@mambo5-2 are you getting results already? that's amazing! i'm so sorry if that's the reason, but from having a friend and what i understand APS is pretty easily handled with medication.

kiki047

@mambo5-2 I'm not really familiar with blood diseases but as far as I know something like hemophilia is extremely rare in women, and I don't think it's necessarily a cause of infertility or MC unless it's being passed on to the child? But that's a question for a geneticist, not an internet stranger. It seems like it's more common to see women prone to getting blood clots, hence requiring blood thinners, not the other way around. 

mambo5-2

@kiki047 it is very possible I'm reading my results wrong and it may be the other way. I will definitely be calling my RE later today or tomorrow depending on if they call. 

kiki047

@mambo5-2 chances are they're going to want to wait for the rest of the results to come in before they follow up with you, most of them do. But it certainly sounds like it's not nothing, so FX you get some clear answers with all of this! 

@optimistgardener my brain has played some evil tricks on me but this is next level... god I'm supposed to see him on Friday, I'm not even going to be able to make eye contact. Thank god for our mask mandate being in place for 5 more days, maybe I can hide behind that for a while longer. Last time he showed up with Starbucks for everyone. I will literally pee myself if he hands me a hot drink  

anniemarie887

@kiki047 are you good enough friends that you could tell him this tale? i mean sometimes stuff like this is funny. years ago i had a dream that MH died and his best friend, who they are like twins in appearance/hobbies, was like sooo YH always said if you died i was supposed to "take care of you" and i def told MH about this weird ass dream and we had some good laughs about it. i also had a dream where i died, and my work bff swooped right in and scooped up MH. told him that one, too. figured at least the dying dreams go both ways 

keikilove

@kiki047 I’m lurking in between meetings and Bwahahahaha!!!! your last comment about Starbucks and the Blanche gif took me out!🤣🤣🤣 Gotta compose myself before this next meeting starts! 

coco2787

*Lurker from way back when*

@anniemarie887

TW for pregnancy and MC talk

I had two MMC and two CP in an 8 month period and did all the RPL testing and genetic testing after my 4th loss showed baby was 100% normal. The only thing that was slightly atypical was that my AMH was only .9 and I was 31 at the time. My RE basically told me IVF wasn’t going to increase my odds of a healthy pregnancy by much, if anything. The only thing we did was add progesterone suppositories (I never had any issues with side effects) and baby aspirin. I carried my next pregnancy to term with no issues. We never got any explanation for the losses. 

anniemarie887

@coco2787 love the lurking! I’m so sorry for what you went through, but that also gives me so so much hope. 

acleverusername

@kiki047 wow what a dream LOL! Did you tell YH? Haha. Let us know if you end up telling your friend. 

I had a bunch of weird dreams yesterday but nothing as racy as what Kiki experienced. Are bad dreams in the air? Is it full moon soon? 

mambo5-2

@acleverusername Friday is the full moon and let me tell you, the ER proves it 

bumblebee0210

*lurking* 

@kiki047 OMG "cup of hot jizz"-- I miss you all so much. 

One more statistics lesson, for old times' sake:

Suppose that the overall "random" miscarriage rate is 20% for a woman in her early 30s. And then let's say there are a small fraction of women-- 1%-- who have an underlying condition that makes their miscarriage rate much higher. Let's call it 80%. (In reality, there are likely a spectrum of conditions that make miscarriage rates higher-- some RI issues are likely close to 100%, others (like low AMH) are probably more like 50%, but let's go with 80% to make the math simpler). The relevant question is-- given that I have had X miscarriages, what are the chances I am in the 1%?

With these numbers (you could change them around if you wanted), then the chances something is wrong after one miscarriage is only 4%. It is much more likely (96%) that you are healthy. For 2 miscarriages, it's 16%-- a terrible outcome!-- but still much more likely (84%) that you are in the healthy group. It's only at 3 miscarriages that you get to 64%-- more likely than not something is wrong. I think it was numbers like these that led to the old rule that they didn't check you out until you'd had 3 losses (with no LCs). But, since most of the test are actually pretty easy to do-- bloodwork etc-- doctors have stopped waiting for 3 losses to do it. 

But if you think about it, with these numbers, even 3 miscarriages in a row, which is a very unlikely outcome (and terrible) for any given woman (less than 1%), it is still reasonably likely (36%) that nothing is actually wrong. The probability that a healthy woman has 3 miscarriages isn't that different from, say, the probability of spontaneously conceiving identical twins (Keep in mind I made these numbers up, but I think they are in the ballpark). 

So-- while I hate the "bad luck" diagnosis with every fiber in my being, and I think women should insist on these simple blood tests if they have had losses, it is still not crazy that people can have 2 or 3 losses, and then go on to have several healthy pregnancies and carry them to term, or vice versa. 

[ps-- for those of you who remember stats class, this is just Bayes Rule. You can do the same for failed euploid transfers, etc]

tessiesmom26

*lurking for now as I'm not ready to jump back in, plus not sure what my plan is, will find out more at my post op later today.*

@bumblebee0210 @coco2787 @anniemarie887 I am super appreciative of your wisdom and stats! 

While I am still benched from my second MMC in 7 months, these numbers and stats all resonate with me as well. We were starting IF treatment (read:BW) when I got my second BFP but while talking about the results and ultimately deciding to do another D&C, my Dr mentioned that "well you can get pregnant, so it's not infertility." It was a very flippant comment and I fully intend on asking for more information during my post op today to see what our plan it, but hearing that there are others that have been here too is so helpful. That's my long winded way of just popping in to say thank you. 

mambo5-2

I'm just over here anxious now.... I want to know what these blood test results mean and I don't want to wait a month until my chromosome tests come back.

anniemarie887

@bumblebee0210 bring on the stats! thank you
@tessiesmom26 i hope today goes well
@mambo5-2 i'd call and see about going over the results that have started coming in, but that's just me!

acleverusername

@mambo5-2 you're welcome to share some of those results here and we can help interpret. None of us have an MD, but we can definitely qualify for at least a PA job based on our experience. 

AFM, I got my ReceptivaDx report back (Doc did said that would be the quickest to come back) and... NO Endometriosis or Endometritis! In fact, my BCL-6 score is a big fat zero!

mambo5-2

Ok the weird ones  as the results read in my online thing

Protime-10.8 seconds (low)
Ptt-<20 secs (low)
fibrinogen level - 91 mg/dL (low)

protein C functional - 36% (low)
protein s functional - 44% (low) 

acleverusername

@mambo5-2 yeah, okay. It does seem like this could be the root cause of your issues. Curious… have your been tested for Factor V Leiden? Protein C, S and Factor V Leiden are closely related. Here’s what the book “Is Your Body Baby Friendly?” says about these:

mambo5-2

@acleverusername
Not that I am aware of or it just may not be back yet from the 10 vials of blood on Wednesday.  But if I was to guess, I'm thinking this lovely mixture is my root cause of my problems and I am very frustrated they wouldn't run a RPL in 2013 when I had my most challenging time. 

kiki047

@anniemarie887 oh no, I can never tell MH about this, he is way too insecure (especially about IF stuff) to ever believe me that I'm not secretly wishing someone else could get me KU. I don't even think that's what the dream meant, at least that's not how I interpreted it. But I can see how that would unnerve him. 
@keikilove 3.5 hours at the clinic this morning meant I was successfully able to dodge him but I still feel my cheeks flush when I think about it. Is this what our lives have come to? 3 straight years of IVF and I no longer get to have sexy dreams, it's just cups of fresh semen apparently. 


@bumblebee0210 hiiii friend! I stole "cup of hot jizz" right out of @optimistgardener's playbook.   


Update from my appt this morning: As expected, my RE downright refused to do the ERA. He is of the mindset that Igenomix is preying on the hopeful/wishful hearts of desperate women looking for answers and they have yet to provide any solid evidence that the tests/results are of any value in a clinical context because it's not data driven. And tbh I'm inclined to agree, which is why I've never pushed the subject with him or my old RE and I just got all caught up in the idea of being able to do something just to move forward. So, as a compromise, we did another endometrial biopsy (the Alice portion of the test, but it gets sent to his lab and is covered by our public health insurance and I don't have to pay Igenomix to do it) to make sure the endometritis is gone, and he agreed to me starting another retrieval cycle with my next period, and then we'll do a double embryo transfer for my next FET with a new protocol (looking at June or July). We discussed the ReceptivaDX test as well, and he said he prefers a laparoscopy but that the wait times for diagnostic laps is over a year and he thinks IVF bypasses endo anyway so he's not concerned about that. He did agree with me that maybe we do a lupron downreg cycle prior to my next FET though, which he said is another protocol they've been trying for some of the more difficult cases like mine. He also brought up surrogacy, but I don't think we're there yet. 

I realized after he sprung the biopsy on me that we never talked about how to safely wind down this mock cycle (4mg estrace 3x/day, and I'm still on 10mg pred that I'm slooowly weaning myself off of) in order to bring on a period in a few weeks to start my 4th retrieval cycle. I emailed the nurses to ask. I don't have enough progesterone on hand to be able to let the mock cycle run its course but I don't think I can just keep taking the estrace then stop cold turkey, can I? I'll see what the nurse says.

ETA: I forgot to mention the part where I'm going to do more IVF before we transfer again, which I feel good about because I was getting anxious about running out of embryos. 

acleverusername

@mambo5-2 girl, I'm sorry that these tests weren't run when you were experiencing RPL back in 2013. It's just a shame. Then again, things in the medical world change pretty fast so it's hard to say how accessible / how "normal" they were back in 2013. The thing to do now is to look ahead. Regardless whether or not you choose to pursue IVF or try naturally, this is good information to have on hand as it will impact your transfer protocol. When you meet with the doctor, MAKE SURE S/HE EXPLAINS EVERYTHING until you're satisfied. 

@kiki047 I'm glad that you decided to do _something_. And even better that Public Health is going to cover the cost of ALICE. Did you already do the EMMA test as well? Is that an option? I'm curious about his stance on how endo is bypassed with IVF. Can you tell me more here? Like does he think that it doesn't affect the transfer? I'm kinda confused. As for depot lupron, I guess it's something you can do in absence of having a solid answer about endo or no endo. Certainly waiting 1 year for a lap is an inhumane ask in your case. 

Also, good idea on doing another retrieval. Better replenish the embryo reserve. 

AFM, 

The results just keep on rolling in! Today I got my EMMA/ALICE tests back. The good news is that I don't have any bad bacteria! Woooooo! The bad news is that I don't have any good bacteria either. Okay, listen up cause this is important... apparently it's important to have some sort of bacteria up there! I went looking on R e d d i t for what to do about this, and was referred to THIS AMAZING POST. Worth a read. (Spoilering because TB hates it when I post 'competitor' links. I've already ordered a bunch of probiotics for my vajajay. Gonna order some pH strips now. 

https://www.reddit.com/r/infertility/comments/rwsxwy/the_uterine_microbiome_emmaalice_menstrual_fluid/

mambo5-2

@acleverusername since you asked my Factor V Leiden came back negative so I'm guessing this is going to come down too I'm Protein C and S deficient

anniemarie887

@kiki047 oh I’m with you that the dream didn’t mean that. Our subconscious just does weird stuff. I‘m not all all remotely versed in these tests, but I’m glad you have a plan and it sounds like you feel good about the next steps. ❤️

kiki047

@acleverusername no, he will not do the EMMA either. He said he hasn't seen enough independent studies that definitively prove that the vaginal microbiome plays enough of a role in implantation and/or live birth rates to warrant putting patients through the false hope of paying for the test then treating it with probiotics only for it to not work. That said, even without specifically testing for it, I did buy vaginal probiotics and will take them before my next transfer if only because I have to take doxycycline before all FETs and will also need to be on more antibiotics if my endometritis wasn't wiped out last time, all of which kill off both good and bad gut and vaginal flora. I already take a good broad spectrum probiotic daily, but when I'm on antibiotics I also double up with a clinical grade (read: $$$) probiotic from Metagenics that's like $2.50/pill but specifically contains lactobacillus rhamnosus. I do notice that I always get suuuper itchy and inflamed after transfers, which I used to think was a coincidence but my working theory is now assuming the doxy is essentially giving me BV. I need to research what to use to check vaginal pH and monitor this as I go. Maybe a combination of probiotics and boric acid will do the trick. 


To answer my own question from my last post, my RE prescribed a 5 day course of provera to wind down this cycle, but I need to time it very carefully because of some major upcoming events this weekend and next, and of course my post-biopsy spotting lasted like 3 days and was actually pretty substantial brown spotting yesterday which was making me paranoid that I've stressed myself out to the point of actually bringing on my period through the estrace supplementation, so I'm wearing an estrogen patch for the rest of the week in addition to the oral E2 until I can start the provera, then we'll see how it goes. I just need to make it through April 2nd (bridal shower for 40+ people that I'm hosting at my house), then all hell can break loose after that.