Monday, September 23, 2013

The utter suckiness of ultrasound days

Thank you all for chiming in. The day of the ultrasound is always incredibly stressful for me, and no matter what, I'm always shook up that day. I spent Saturday evening crying, and my father told me that I needed to not get so emotional during this process. I told him that I'm only emotional in fits and bursts, and that I would be fine on Monday. Turns out, that was true. I'm fine today, and I will continue to be so till  the next scan in 2 weeks, at which point I'll turn into a wreck again, unless things look picture perfect, and they never probably will.

There is no telling what will happen now. The lag in growth IS a bad sign. Does it mean 100%  that it will translate in miscarriage? No,  but it sure does raise the odds.

Then again, as somebody commented, miscarriages can come out of the blue. Pregnancy # 2 grew at just over 1 mm per day, and had a pretty normal seeming hearbeat (150 at 8w1d), and everything stopped 5 days later.

Btw, here is an interesting fact: while there can be a larger variability in measuring the sac, inter operator variability in measuring CRL is much lower: one interesting study noted that one person measured 6 mm, a second person would measure between 5.4 and 6.7 mm, a +/- error of less than 1 mm. So no matter who is measuring, I'm behind.  
 
Reproduced from http://onlinelibrary.wiley.com/doi/10.1002/uog.10075/full#tbl3
Right now, I'd give myself a 50-50 chance of making it. I found this very interesting study from England. They got a batch of patients who looked like they may miscarry in the early ultrasounds, and took 2
ultrasound readings in the first trimester, and looked at what cutoff of CRL growth predicted miscarriage most accurately. Note that normal growth in most viable pregnancies is about 1 mm per day.

All the pregnancies shown in blue made it, while the ones shown in red did not. Based on this, the authors concluded that if CRL increased at less than 0.2 mm  per day, you had no chance. If the increase was 0.4 mm per day, you had a pretty high frequency of loss, but some did make it. Note that the authors only observed them till 11-12 weeks; some of these may have been the viable trisomy category (which is the absolute worst case scenario). At around 0.7 mm growth per day, things seem split down the middle, and that is where I stand. My chances are definitely lowered, but things may turn out to be okay.

And very importantly, today, I am okay. And I'll be okay no matter how things pan out here.

Saturday, September 21, 2013

Not looking good

There was a heartbeat, nice and strong, at 178.  There has been growth too, up from 2 mm the last time to 15 mm today. The problem is, at the last ultrasound at 5w6d, it was measuring 5w6d.  Today, at 8w3d, the embryo is measuring 3-4 days behind, at 15 mm (16 mm is supposed to be the normal 8 week CRL).
Normal growth everyday is supposed be 1 mm. This baby is growing at 0.7 mm every day, which is exactly the value I calculated in my first pregnancy. I then had freaked out, everybody pooh-poohed me, and then my mom left, and I discovered my first miscarriage 5 weeks later, which just made it all so much worse.

When the doctor at RMA NJ was asking about my pregnancies, he specifically asked me whether there had been a slowing of growth between 2 ultrasounds (measuring on target at one point, and then behind the next).

According to the conversation I had with him, and reading the accounts of many many women freaking out, it is fine if you are consistently behind (For example, if you measure 6 weeks when you are supposed to be 7, but at the next ultrasound, the lag remains the same and does not increase). But if your growth lag increases with every passing week, then that pregnancy is *probably* on its way out.  This is borne out by both what the RMA-NJ doctor said they observe frequently, this study, anecdotal accounts on the internet,  and what I observed in my first pregnancy.

However, the other thing is that J has been barely eating, because her nausea is so bad. I'm hoping the slower growth is due to poorer nutrition;while that is far from ideal, many women who starve through the first trimester go ahead with no issues. She is also having dizzy spells, which make me wonder how her iron levels are. My RE advised against iron supplementation right now because it makes the nausea worse, but I wonder how anemic she is at this point, especially if she is feeling dizzy. I don't know if poorer nutrition retards growth, or rather, how poor the nutrition has to be to achieve this. She is atleast taking folic acid (and some vitamin D), but nothing else. I had a really long conversation with her about nutrition today, and her options.  We'll see how much good it does.

I've almost resigned myself to the fact that this one may end. If it does not, it will be a very pleasant surprise. My parents talked me out of testing again in one week, because if the lag has only increased but the heartbeat is still there, that just creates more stress. But, on the flip side, if the heartbeat stops soon, I don't want to wait weeks to discover that, for multiple reasons. As a compromise, we agreed to retest in 2 weeks.

What a good place to be in, again. I don't want to be the one freaking out. But I've seen warning signs in each pregnancy (except my second, which looked close to perfect till it was over) and when I talked about them, everybody told me to stop drawing conclusions on insufficient information and stop worrying for "no good reason." Unfortunately, I was right then. I'd really, really like to be proven to be completely wrong in this instance.


Friday, September 20, 2013

All the goodwill in the world

A fellow blogger Paige lost her first baby to pPROM in 2010. I just found out she lost her twin boys, possibly to incompetent cervix. I found out about Paige's pregnancy a few weeks ago, and I was hoping so badly for a happy ending for her, and everybody wanted things to go well for her, so very much. All the goodwill in the world---we feel like it should be a powerful thing, and yet it is but a leaf in the wind that proves utterly ineffective all the time. Who has the power? Who decides these things? Is it the most likely possibility decided by "n" number of biological variables working with or against each other, unaffected  by outside influence? Or is it the universe's will?

My mother keeps telling me that no matter what I do, I have to have the sanction of destiny for it to work out. Maybe, maybe not.  Its a question that my brain keeps circling around, and will continue to circle forever.

I'm heartsick because of Paige. This is her blog: I request you all not to go there to silently watch, but only go if you want to truly commiserate.  

I'm sorry I've been silent about my situation: the ultrasound was delayed this week because my RE's receptionist did not book an appointment well enough before hand and could not get a slot. It will happen hopefully tomorrow. J would be about 8w4d along. Don't know what I will find...mostly comfortably numb, except for moments of that familiar heart-in-your-throat panic when I actually think about it. If the baby is still fine, this would be the furthest any pregnancy of mine has come. I know there is a lot of goodwill coming my way too. I wish something like that could have been the deciding factor, instead of an unseen, incomprehensible power running the show.

Sunday, September 8, 2013

Rambling along

First, I owe the Indian lab testing establishment a bit of an apology, it appears that THEY do follow the TSH mandates; the normal reference range according to a leading testing lab (Metropolis) during the first trimester is 0.5-2.5 microIU/mL.

J (very thankfully) is anti-thyroid peroxidase antibody negative, and her TSH has decreased from 2.77 to 2.3. How I believe this happens: your need for thyroid hormones increases during pregnancy. Soon after you become pregnant, you body increases its production of TSH. This causes your thyroid to make more T4 and consequently, T3, and these in turn, through negative feedback regulation, could suppress your TSH.

This is what happens when your thyroid function is normal. If you do have anti-TPO antibodies, this process could be out of whack, and your TSH could be elevated during pregnancy, as in my experience: I have anti-thyroid antibodies and my TSH levels increased during pregnancy because my body may have not been able to meet my thyroid needs: In my opinion, the prudent thing to do is check TSH twice, once before, and after, you get pregnant. If your TSH is high and you turn out to have anti-TPO antibodies (seen in one of of every ten women), then, you should treat with thyroid hormone.

Unfortunately, J is vitamin D insufficient (20 ng/mL), and this is after I gave Vitamin D pills (2000 IU/day). I believe she took them for a while, because her levels are not terribly low, especially for a newly pregnant Indian woman: Indians on the whole tend to be more deficient, for whatever reason, that white people, while people of African origin appear to be even more deficient than Indians, and I don't know the situation for Asians.

Insulin resistance is rife among Indians today, and one reason for the this increased incidence may be the seemingly endemic-nature of Vitamin D deficiency. Studies now suggest that if you are vitamin D-deficient during pregnancy, even if everything goes well, your child, depending on his or her genetic vulnerabilities, will be at increased risk for wheezing and asthma, schizophrenia, multiple sclerosis, type 1 diabetes mellitus, and insulin resistance. And maybe even the most scary thing of all, Autism.

The good news is that J is still having nausea. Unfortunately, this makes her unable to gulp down pills. I'll now have to make her have the Vitamin D sachets, which have ridiculously high dosages of 60,000 IU per sachet.

The next ultrasound is in 10 days, according to the handler. That should be just short of 8 weeks.

Thank you Augusta and Sloper (and indirectly, the wonderful Adele), for what you said. I am thankful that there are many people out here who truly get what I am going through. On the other had I'm also sad that they get it, because the only way you can is to have gone through one or multiple losses.

I still have no faith that this will work, I'm just watching and waiting. That faith can only come with time. Like I commented on Jo's blog (who has successfully crossed the 12 week point, YAY!) is that while we can feel optimistic about somebody else's chances, it is hard to summon up a similar optimism about our own situations, especially if you have had "normal" ultrasounds at the 6-week point end in in miscarriages at the 8-week point, thrice. What Augusta said a while ago, that it is human nature to keep expecting history to repeat itself, is something I remind myself of regularly:  I know it does not mean it HAS to, again. It is just hard believing that in my heart.

Friday, September 6, 2013

First ultrasound

This has to be the most chilled out ultrasound I've ever had, and I'm saying that because I was not there for it: I was flying somewhere high above the Atlantic when it happened and was probably watching a Ryan Gosling movie during the event. Best.Ultrasound.Ever.

The baby is measuring on track(ish) (5w6d), with  a really high heart rate (139) (!!). The normal range for this time period is supposed to be 80-110, so that is mildly eye-brow raising.  The shitty bit with knowing too much is that I know that while slow heart rates are definitely associated with aneuploidies,  higher heart rates (as measured a bit later) are associated with Trisomy 21. I am not really stressing out about it, because hey, what would be the point? Plus its not crazy high right now: it would be if it were 190+ a week later. If it just coasts or increases only mildly, then there should be be no cause for worry. If anybody has any crazy high early heart rates producing healthy babies, please, chime in. Yes, we worry every which way, and we can't help it.

Chiming back in with an update on my understanding of heart rate in Trisomy 21 pregnancies: it looks like it may be low in the 6th week,which is  seen for most aneuploid pregnancies. However, an elvation at a much  later point (past 10 weeks-ish, not sure) has been observed for Trisomy 21 pregnancies. 

Based on an explanation I read, this may be the deal: In a healthy pregnancy, the heartrate starts out slow, and keeps increasing till it peaks at 9 weeks at around 180, and then rapidly declines a little. The theory is that this decrease may not occur normally in Trisomy 21 pregnancies, which is why late elevations are associated with this condition. However, I want to reiterate that there are many many women with high fetal heart rates at late points whose babies are absolutely fine: don't want to worry anybody!

Either way, at this point, I have no logical basis for worry on this score.

In between all of this, I am, just for shits, giggles, and my own peace of mind, ordering a blood test (I have the fun task of having to arrange it myself) to rule out that the surrogate is anti-thyroid peroxidase antibody positive. If she is not (and I pray she is not, and she most likely is not) then I have nothing to do here, which is absolutely awesome.

The poor woman is also feeling really wretched; nausea and giddiness, and its so bad that I want her to keep feeling wrecked for a while....but what can you do? We've all heard the story about disappearing symptoms, though I'm sure that it has proven to be nothing in many a case.

I am starting to look at early screening (CVS), while debating the need for this level of screening.

It is so unbelievably scary when you are waiting for a baby to develop, especially when "normal development" has been applicable to everybody other than you. I mean...who has normally developing babies, other than almost everybody who gets to this point? Yet, I cannot even comprehend being that lucky. I don't even want to know when the next ultrasound will be, but I will not be able to stop myself from asking. 

Wednesday, August 28, 2013

A post on endocrinology, and need all your inputs about something else

First, lets get the pregnancy-related news for the day: The betas doubled appropriately, going from 661 on day 17 to 2329 on day 20.

About thyroid in pregnancy and the state of affairs in India: 
According to the studies coming out in the recent years a Thyroid Stimulating Hormone (TSH) value of over 2.5 is considered unideal for pregnancy, and is managed by giving patients a small dose of thyroid hormone(T4), and then checking the TSH, T4, and T3. The endocrinologist I saw in New York (Robert Lind, who presented with the trifecta of perfect qualities in a physician (approachabilty, keeping up with literature, and sensibility), followed the practice of keeping my TSH well below 2.5 during pregnancy. The endocrinologist I saw in San Diego also followed this practice.

Shannon, I'd love to get your take on the overall policy in the US overall about this. 

Unfortunately, doctors everywhere are resistant to change; I think they get convinced of a new practice  if they a) read a study and everybody is talking about it or b) go to a conference and a large number of their peers endorse the idea. It is only a small percentage of doctors who actively innovate as opposed to doing it by the book.

Hence, while the TSH normal range adjustment has taken in the US (enough people talking about it), it is going to take much longer to come to India. Overall, I think doctors and practices here are around 5 years behind the West, where all new ideas first most often come, which is a seriously depressing thought.

I came up against this today:It took 6 emails for my RE to give me the TSH value, which he pronounced as "normal."

When he finally sent it to me, it turns out to be above 2.5; 2.77 pre-pregnancy. Which means it will likely go above 3 during pregnancy. Ideally, it should be managed by prescribing thyroid hormone (T4) and then checking the values regularly.My RE flat out refused to do this, and  unfortunately, I think I would have a difficult time convincing endocrinologists here to do it, and I may have to manage J's thyroid levels myself (it is easy and straightforward) but still, I should not be having to do it, because I'm not a doctor. It really sucks that I have no choice.

Overall, not a good testament for medicine in India.

Infertility consulting?

Every now and then, I get an email from somebody asking for advice/help about what to do.  I realize I have a lot to offer, from explaining the treatment path options, informing them of their choices, picking doctors, looking up options (for example, finding the one place in India that provided PGD options; that was not easy), and helping them process what their doctor is telling them, and helping them figure out if their doctor is good or is taking them for a ride.

Basically, act as a consultant and get paid something for it. I would probably start out by maybe charging a 100$ per case (a flat fee).  Before I flesh this idea out any further, I would love feedback about how viable this is. Please be as honest as you want to be; what I''m really trying to figure out how many people would be up for paying a little bit more ( a drop in the bucket compared to what they pay for infertility treatments) for this.

Any business/legal advice about the feasibility of this would be welcome as well.

Tuesday, August 27, 2013

All about betas

The day 17 (or 16.5) beta came in on Saturday, it was 661, up from 191 three days prior, which works out to a doubling time of 40 hours.

There used to be a great website called Betabase Info; it has been down for a while now, but some enterprising person took a snapshot of it, and some other enterprising person shared it: This is the link to its snapshot on 2 separate days. Based on betas reported by a large number of women, my numbers this pregnancy are in the normal range, and are about three times the average (median beta levels on day 17 are in the 200s).

However, the thing that mildly increases my anxiety is that the levels are half of what they were at the same time point in my first 2 pregnancies (around 1200), but somewhat reassuringly, are double of what they were in my 3rd pregnancy (around 300).

God knows what will happen in the next 2 weeks. I'm firmly agnostic, but last week I found myself agreeing to go to a temple (I usually avoid it if it is impractical, or I have something else to do). This time, I consented to a 2 hour drive and prayed very fervently for this little pinprick of cells to make the transition into a healthy living being. Sometimes, that is all you can really do.

I also had the opportunity to meet Tiara in real life, and it was wonderful. She proved to be as sweet and lovely as you would expect if you are familiar with her cyber persona. Thank you Tiara for making that meeting happen. The one good thing we can say about all the crap we have to go through is that it also fosters such wonderful connections.

Friday, August 23, 2013

Slightly sheepish

Turns out, accurately assessing DPO is a bit tricky when you freeze an embryo, thaw it, and then transfer it.

I sat down and calculated, by plugging in when the embryo was frozen and when the transfer occurred, and realized that it was not the 15th day of embryonic life, it was between the 13th and the 14th day that the beta was tested on.

Going by that, the beta would be in the range the values obtained in my first 2 pregnancies.

Repeat beta is 72 hours after the first one.

This is such a rollercoaster: I'm so freaking thankful I only have to ride it indirectly.

Thank you all for your reassurances, and your good wishes. It means a lot to me.

Wednesday, August 21, 2013

Off the starting line...again

The results of the 2nd transfer are in; the surrogate (J) is pregnant, with the beta being 191.5 mIU/mL on the 15th day of embryonic life.

I did a happy dance (which mostly involved hyperventilation) till I realized that is a low value; my first 2 pregnancies were around 450 mIU/mL at this point, while my 3rd pregnancy (the trisomy) was in this range, being around 140 mIU/mL.

Some trisomies tend to have lower beta values, while others (like trisomy 21) can present with higher values.

I'm trying to think of everything possible to explain this; I'm tiny (I weigh just over a 100 pounds), while J could easily be twice my size, which means she has a much higher blood volume as well, which means a same amount of hormone produced is getting diluted in a much larger volume of blood----yeah---that is what I'm going to go with.  I'm so not clutching at straws, right?

The good news is this is not likely to be a twin pregnancy, which is great if it actually continues.

Off we go again; pregnancy #4 is underway. 

Thursday, August 8, 2013

My super secret life (and results of the RMA-NJ consult)

It is funny how much I have going on, and so few people know about it. I'm currently in Canada, visiting family, and they have no idea what I'm going through. I sent my medical history (a mind-boggling total of 70 pages) to RMA-NJ, and nobody knows I've shed so much blood. Almost nobody I see on a daily basis knows about my D&Cs, my attempts to have babies, the fact that I have a blog visited by people from all over the world, that has made me over a 100 bucks in advertising (thank you, Google ads). When people talk about their problems, I kind of am amazed as to what I handle on a day-to-day basis without ever talking about it anymore. Anybody who leads this secret double life and goes about with a smile on their face regularly deserves applause, and I know a lot of you do so.

Anyway, getting to the meat of things:

Next transfer to the surrogate is set for Monday the 12th.

I had my phone consult with a doctor at RMA-NJ today, and it was a fun talk (I'm the only crazy person who thinks a breakdown of my problem is fun). We talked solely about the science of things, and it  is obvious that he would be the best informed and forward-thinking of any of the REs I have been to ( I seem to be collecting them, this would be my fifth RE!). RMA-NJ has a ton of studies going on, and some of them tackle questions that I've spent a while pondering, which is pretty cool.

Here are the salient points of our discussion
Turns out there are 2 roads to infertility as far as the egg goes:
Biochemical aging: Herein, the egg has metabolic issues; it divides poorly and and often does poorly in IVF. People with this issue hit menopause earlier. Importantly, this problem is correlated with the antral follicle count, and women with this issue present with diminished ovarian reserve.
Ovarian aging: Herein, the eggs may have no metabolic issues, even at an advanced maternal age. They may grow well in IVF, and women with this issue can have an abundant ovarian reserve with perfect FSH, and are often found to hit menopause much later. Yet, something is wonky with the meiotic process, and they produce eggs with aneuploidy. Importantly, this does not correlate with the antral follicle count.

The doctor concluded, based on our conversation, that my case may be one of ovarian aging, because, at a young age (early 30s) 2 out of my 3 naturally produced eggs have been aneuploid, and the first one (normal XY by karyotyping)  may have had genetic deficiencies as well, given the way the pregnancy progressed (slowing of growth between the 6th and the 7th week). So unless I'm insanely unlucky, I have an aneuploidy issue. The silver lining is that my eggs are, from a biochemical/metabolic standpoint, stellar. This my explain my family's crazy high fertility. I just have a problem that they did not have.

In other words, if you have decent AFC, decent FSH/E2, ovulate regularly, do well in IVF, get pregnant easily, but suffer from RPL, your issue may be ovarian aging. Here is the bad news: there is no biochemical test that can be done on you to diagnose it: there are no markers, nada. Since we do not know what causes this, we cannot fix this either.  The only way to sort of confirm that this is your issue is through CCS, and it will tell me if I need to go to donor eggs or adoption to have a baby.  So come early 2014, if all my transfers fail, I will pack my bags and return to the US.   

If I have to do IVF, they would put me on the antagonist protocol. The doctor expressed surprise that the microdose lupron protocol was chosen for round 1, given my AFC/AMH. Sigh...live and learn. It sucks to have done 2 IVFs though, and have to go through so much to get an answer. Had I a crystal ball, I would have gone to these people last year, and saved myself a ton of time (and money). Of course, if the surrogate gets pregnant, I'll sing a different tune!