Monday, August 06, 2012

Hypothalamic Amenorrhea BFP update

I posted a summary of the stats I've been tracking for HA pregnancies from the Fertile Thoughts Hypothalamic Amenorrhea thread last year.  Figured it was about time I updated!  So here are the data including the additional year.  The overall percentages haven't changed by much. However, when you look at just the pregnancies since my last update (109 in total, see below), there are some interesting trends. 

First, the grand totals:

Pregnancies:  361

First post-HA pregnancy: 279 pg
Natural: 72 (26%)
Clomid: 82 (29%)
Clomid + injectables: 6 (2%)
Injectables: 68 (24%)
IVF: 45 (16%)
Other: 6 (2%) - GnRh pump (2), adoption (3), zoloft (1)

HA vets - subsequent pregnancies: 82 pg
Natural: 63 (77%)
Clomid: 4 (5%)
Injectables: 7 (9%)
IVF: 7 (9%)

m/c rate: 19%

Total pregnancies in the past year: 109

First post-HA pregnancy: 83 pg
Natural: 14 (17%)
Clomid: 31 (37%)
Injectables: 19 (23%)
IVF: 19 (23%)
GnRH pump: 1

HA vets - subsequent pregnancies: 26 pg
Natural: 20 (77%)
Clomid: 1 (4%)
Injectables: 1 (4%)
IVF: 4 (15%) - three with first from IVF, one with first two natural (that would be me!)

19 miscarriages, for a m/c rate of 17%. 

So there are a couple of interesting points in comparing the overall data with those from this past year.  First, Clomid usage seems to have increased quite a bit - perhaps because people have seen that it does work quite well with HA and are more likely to try it?  Second, that the number of people doing IVF has increased quite a bit as well.  My impression is that it's due at least in part to the high cost of injectable cycles, with people thinking they'll get more bang for their buck (higher success rate) with IVF.

It's not statistically significant, but in this past year the miscarriage rate (per cycle) from IVF was 27% (6/19), as compared to right around 15% for pregnancies that were natural (5/34), from Clomid (5/32), or injects (3/20).  Of those who miscarried after IVF (four women), one became pregnant naturally, one with Clomid, and one on a combo natural/FET cycle (with twins so both the natural and FET originally implanted, but subsequently lost one).

1. First post-HA pregnancy is not necessarily a first pregnancy as some develop HA after having a child already due to overexercise / underfueling.
2. I have grouped Femara and Clomid (including the extended clomid protocol) together in these stats
3. Due to miscarriages, some people are represented multiple times
4. Injectables is usually Menopur as with HA we need LH in addition to FSH to have the best response to injectable cycles. Some people have used FSH + hcg or Luveris. FSH alone is more likely to lead to cycle cancellation.

Hypothalamic Amenorrhea book!

I stopped working about a month before little C was born.  I had been working two days a week for a pharmaceutical company, managing testing for clinical studies.  It brought in a paycheck and got me some adult interaction that definitely helped me be more patient on the days I was home with the kids - but the job itself wasn't particularly fulfilling.  Didn't make any use of my PhD, it was mostly just organizing and staying on top of samples and labs.  Good for then but not a long term career.  So there was no question for me when C arrived that I would look to go back - maybe eventually, but not for at least a year.

I have toyed with the idea of going back to school - med school specifically, with the idea of becoming a reproductive endocrinologist, and getting to help women get pregnant, because I have found through my years posting on this blog, and even more so, on the hypothalamic amenorrhea thread at Fertile Thoughts, that the joy I get from supporting women in their quest to become mothers is incredibly fulfilling.  But honestly, med school?  Who am I kidding?  I'd have to take the MCAT again, and while I did well on it when I took it, gulp, 15 year ago, I'd need to do a lot of studying to get  back there.  Then four years of med school, residency, an OB fellowship and then a RE fellowship - I'm looking at being around fifty before I'd be done.  And yes, I could do it - but I think that it would come at a high cost to my family and I just don't think that is the right road to take.

So I've been mulling over what I could do instead.  What could I do to continue to help women with HA achieve their dreams to become mothers?  Get the message out!  It does seem that magazines and other blogs are starting to talk about how overexercise and undereating, particularly in combination, are not as healthy as we have all been led to believe they are, and are particularly detrimental to fertility.  Finally!

What I think I can add to the conversation, and would be worthy of writing a book about, is data about HA from the large cohort of women who have posted on the fertilethoughts HA thread over the years.  I have collated information on 325 pregnancies to date, and I'm sure there are more from "vets" that I am unaware of.  So my plan is to put together a comprehensive survey and ask those women (and perhaps others who might find such a survey through my blog or other places I advertise) for a bit of their time to help put numbers on things like the amount of time it takes to get cycles back naturally, the likelihood of pregnancy at different BMIs, what changes in exercise habits they had to make, that kind of thing.

I have a basic outline put together, and will post that  soon, which will include the questions I'm trying to answer with my survey, and the various topics I think are worth covering (questions that come up time and time again on the board).  I'd love any feedback you have to offer, now and when I post those!