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. 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!