Tuesday, July 29, 2014

Interesting fact of the day!

I'm in the midst of analyzing data from my surveys to add to our book on HA recovery (more on that soon!!!)

I was looking at what percentage responded to Provera by getting a bleed, and how long after the last pill that bleed typically was.  I also decided to look at whether bleeding in response to Provera predicted recovery of natural cycles.


*  18% (48 / 256) responded to Provera the first time they tried it (most likely while working towards getting a diagnosis).
*  26% (31/119) responded to a subsequent Provera challenge.

*  The median time to response was three days after the last pill
*  95% bled by five days after the last pill,
*  All but one (out of 86 reporting time to bleed) responded by eight days after the last pill

The interesting fact of the day is that responding to Provera in no way predicted recovery of natural periods!

* 46% of those who bled in response to Provera restored natural cycles (prior to moving to treatment to get pregnant)
* 47% of those who did not bleed resumed natural cycles.

For all intents and purposes, the same.  I would have expected that bleeding in response to Provera would strongly predict regaining natural cycles.  Apparently not!

Thursday, May 29, 2014

What's a few extra pounds?

I'm knee-deep (maybe more like neck-deep) in working on my book on hypothalamic amenorrhea recovery; currently working on chapter 23 out of 30, so getting closer and closer...*huge grin*.

A couple of months ago I noticed that I was feeling HA-like symptoms again, despite cycling regularly ever since I weaned baby #3 about a year ago.  I do a lot of work late at night, and I was constantly feeling cold, having to get a sweater to put on, despite keeping the house at a fairly balmy 70 degrees.

My scale broke a while ago and I never bothered to replace it, so I had no idea how much I weighed.  I did a quick check at the gym one day (I am currently spending 45 minutes a week there, while #2 has his gymnastics class) and was surprised (and yet not) to find that I was at a mere 124lbs.  That is pretty much what my weight was when I was at the height of HA - I dropped to 120 for about five seconds, but 124 was my stable weight.

Things are VERY different now than my HA days - I eat whatever I feel like and get a total of about two hours of high intensity exercise a week (writing a book is not conducive to exercise!) as opposed to limiting myself to 1500 calories with 2-3 hours of daily exercise.

But, between my weight being lower than I expected and feeling cold all the time (and hungry at night too), I was clearly not eating enough.  So I added ice cream, bigger portions, whole milk to my cocoa (which has become my new addiction) and weighed myself about a month later, back up to my standard of 128.  Whew.

Today I hopped on the scale again, another six or so weeks later, and now up to 132. My initial reaction was, "gulp", but then as I thought about it more, A) I'm nice and toasty warm, I've been in short sleeves the last few nights - and the temperature in the house has been exactly the same, B) I'm not nearly as hungry in the evenings, and C) I'm not even noticing my clothes fitting differently, and D) my cycle is MUCH more normal (back to a nice 12-day LP).  So who the heck cares? On top of all the other positives, I actually think my face looks a bit fuller = fewer lines = younger so there's that too.

I'll take it!

Thursday, September 19, 2013

Menstrual cycle abnormalities in exercising women, including me.

So  much great information on HA is available in the medical literature.  it really is a shame that your average OB is not better educated.

My friend was recently told that she had less than a 50% chance of regaining cycles if she gained weight / cut exercise.  Way to pull a stat out of where the sun doesn't shine doctor!

Here's an article where they followed women with FHA for an average of eight! years.  The doctor counselled them on the advisability of gaining some weight and cutting exercise to help restore cycles and improve bone mass density.  70% of the women started cycling again.

Those 70% gained between 6.5 - 28 pounds.  Cycles were regained for the most part between years 1 and 2 of changes.  (Keep in mind that these were gradual changes and many of the women were on either HRT or birth control pills, with a break every 6 months or year to see if they were cycling).

Take a guess as to the weight change of the women who did not start cycling again.  Surprise surprise, either no change or a decrease of a pound or two.  Unfortunately they don't mention changes in exercise.

I also think that the cycles could have resumed more quickly had the weight gain / exercise changes been made in a shorter timeframe.  Most of these women were not trying to conceive at the time the study started, so had less incentive to restore cycles in a short timeframe.

This is another interesting article where three menstrual cycles were examined in either sedentary women, or "moderate exercisers".  (On average, running 20 miles per week plus 5 hours of other, nonspecified, exercise).

In the sedentary women, 91% of menstrual cycles were ovulatory, 9% (all in one woman) had a luteal phase defect.  In the exercising women, 45% were ovulatory, 43% had a luteal phase defect, and 12% were anovulatory.

There was no significant difference in energy availability between the ovulatory and LPD cycles in the exercising women (although both were lower than the sedentary women).  Again, though, I bet you can predict what the energy availability looked like in the anovulatory cycles... yup - MUCH lower.  These women had an average energy balance of about -1000 calories per day, and also ate only about 50% as much fat as the others.

So even in recreational exercisers who are cycling, the energy deficit can cause cycle issues.

Speaking of luteal phase (LP) defects, I now have four postpartum periods to compare in my own life.  In all three live birth cases, my first cycle was while still breastfeeding, but I weaned right around the time the second started.

After #1 was born my LPs were as follows (P = I used Prometrium 200mg 1x/day) (bmi 21.9):
4, 8, 7, 16P, BFP

After #2 (bmi 20.7):
6, 6, 7, 9, 9, 9, 10, 10, BFP [

After my mc (bmi 21):
7, 14P, 14P, 14P, 14P, 10, 12, 13P, 14P, 18P, 17P, 12

After #3 (bmi 20.3):
10, 10, 11, 12, 12, 12

Guess what the difference is after #3 when my LPs have been much better and gotten longer much more quickly - VERY LITTLE EXERCISE!

Now, I ride my bike maybe once a week and play ice hockey once a week.  A fair bit of walking bc of chasing after the kids, and I lift weights once in a blue moon.

After #1 and 2 were born I was playing hockey 2-3x/week, biking to/from work, and lifting weights 2x/week.

More food for thought.  Pun intended ;)

Sunday, September 15, 2013

Energy availability and exercise

I've been doing a lot of research for my upcoming book and have come across a lot of really fascinating information that is just not very well publicized.  So I'm going to take a little time out of writing every few days and share some of the info here.

The first article is this one:  Energy availability in athletes, by Anne Loucks et al.

So here are some of the tidbits from this article (it's a review, so they're other studies that are referenced. I have not read each individual study yet.)

In studies where men or women were in "room calorimeters" (basically a device where they truly can measure every scrap of energy that you're using), they found that exercise was NOT compensated for by an increase in hunger signals, which meant that it was extremely easy to operate with an "energy availability" that was too low to sustain normal physiological processes = reproductive system shut down and all the other negative effects of hypothalamic amenorrhea. This is because exercise actually produces a hunger suppressive signal.

They did note that there ARE some people for whom hunger signals increase with ongoing exercise, they called these "compensators" vs. those for whom hunger signals did not increase, "non-compensators".  This difference could partially explain the difference between women with similar BMI and exercise, one who menstruates and the other who does not - nothing overt, but one IS adequately fueling her body and exercise, and the other is not.

Also, the slowdown of physiological processes happens immediately when not enough energy is being consumed; in the same experiment, they showed that the resting energy expenditure was decreased by 90 cal a day when in an energy deficit. So one day of negative energy balance isn't going to throw everything off, but throw in three or four in a row, and you're not doing your body any favors.

It explains so much about why you have to over-feed to actually recover from what you've done to your body. All those systems that have been shut down have to ramp up again, and use more and more energy as they do - and reproduction comes last!. So keep on eating, and sitting on the couch!!! (or if you do exercise, don't rely on your hunger signals to compensate for that exercise, you probably need to eat more than you think to make up for it.)

Wednesday, May 08, 2013

HA survey...

Edited... there's still time... everything takes me longer than I think it will these days.  I'll update this post when I've closed the survey and started the analysis.  I only need a few more responses to get to 250 which I think is a nice number - so if you see this and haven't taken the survey yet, there's no time like today :)


If you're reading this, have or had hypothalamic amenorrhea, and have either made changes towards recovery, recovered, or gotten pregnant, I'd love if you would participate in the survey I'm doing for my book.  It will take probably 30-40 minutes.

You can either use the link below, or send me an email at noperiodbaby@gmail.com with an email address to send the survey to.  The link is supposed to save your work as you go along so that you can re-enter and finish at any time, but it's been somewhat unreliable.  So if you think you'd work on the survey over a few sessions it would be best to do it via a link I can send through email, which will definitely save.

I'm planning on starting my analysis on 5/13, which I realize is just a few short days away - so if you can take the survey before then that would be marvellous.

Thanks so much!!!

HA Survey link

Friday, November 23, 2012


I was trying to remember some of the thoughts and feelings I had way back before being diagnosed with HA, and remembered the very first blog I started, A Nickel for My Thoughts (because my name is Nicola, get it?  ha ha ha).  Went back to it, and there were a few posts that added more backstory to this blog, so I decided to copy them over here so everything's in one place.  So if you subscribe to this blog through a feed reader or email you might see the posts popping up - they're all from almost eight years ago.  Hard to believe it's been that long!

They start with this one if you're interested in reading through them.

Monday, September 10, 2012

HA and weight. Which turned into my entire ttc history.

I've been thinking a lot about my weight over the past years as I'm putting together the survey for my book.  So I thought I'd post my weight history for as long as I can remember, as I think it's interesting, and perhaps useful for others going through this.  (Note, I'm about 5'6").

I first got my period at age 14.  Kinda late.  It was the summer after freshman year, I was babysitting for a family up in Maine and my best friend happened to be visiting.  Fortuitous if I wasn't going to have my mom around, to have someone else I could confide in.  I have no idea what I weighed at the time.

My cycles were fairly irregular, and I remember my periods lasting FOR.EVER.  Each was at least 10 days of bleeding.  And I never knew when they were coming, although as I think back on it, I feel like it was about every 5-6 weeks or so.

Then at around 18 I started on birth control pills for a short while, but wasn't very reliable about taking them, so ended up with Norplant (the rods that go in your arm) after a couple of years.  Loved it.  Especially loved that I stopped getting my period a few months in.  I think my weight at the time was in the mid 120's.  That was when I was about 20.  In college I started exercising a bit - I'd go to the gym and use the stairmaster (doing the classic - level 10 but holding my weight up on my wrists. ha ha.) and would run occasionally.

The Norplant lasted five years, I met my husband, and we got married.  At some point I had them taken out and went on the pill.  I worked for a few years, then went to graduate school.  And this is when I really started paying attention to what I weighed.  I guess over time my weight had gradually trended upwards until I was sitting at about 139 in grad school.  Which was fine, but I was never particularly happy with my love handles and the bit of cellulite I had developed.  Went on a few "diets" but could never be particularly consistent about it because I just loved food too much, particularly junk food.  If I could be healthy and live on chocolate and chips I totally would!  During this time I became much more active than I had ever been before - started playing ice hockey a few times a week, volleyball, weight lifting, squash - I loved being and feeling so fit!

Then, some of the post docs in my lab whom I hung out with a lot decided they needed to lose some weight.  And I thought I would join them. Finally get rid of those love handles, and "get healthy" in preparation for having a baby.  Because I'd seen so many places that if you were overweight you should lose weight to be more fertile, and so I figured that was true for me too.  They were men, quite a bit bigger than me, and were aiming to eat 1500 calories per day.  I figured that would be a good goal for me too, as I was smaller than them but exercising more.  So I started an Excel file (I have one for everything!) where I would track my calories for each day.  With all the exercise I was doing, my net calories were around 7-800.

And I lost weight.  BOY, did I lose weight.  I think I lost 12 pounds in the first month I was doing this, then a few more after that.  Which got me down to my low weight of 120.  It was so addictive seeing that number on the scale go down!  I loved how I looked (I had a six pack! and you could see the vein in my bicep!)  And then I went off the pill because we decided we were ready to have a baby.  And my body just laughed at me.

I went to see my PCP, and then my OB/GYN.  Eventually I was diagnosed with HA, and my OB did tell me to cut down on exercise.  I had gained back to about 133 by that point, but still no period.  This was about six months after going off the pill.  Then went to see an RE, who was very doubtful that I would either start to cycle on my own or that Clomid would work for me.  Up to 136 (Jan '05).

Two months later I got my period while on vacation! Had a couple of ultrasounds after I got back and had a 14mm follicle that didn't grow in two days.  So we started on the injectable/IUI rollercoaster.  Over that period my weight kept going up.  Four BFN cycles (just reread all my archives - had forgotten how hard it all was).  Gained some more weight up to about 140lbs (yes, back to where I started!).

After the four BFNs we were going to move on to IVF, but not for a couple of months because of insurance.      Decided not to take bcp until we knew what our IVF schedule was.  Amazingly, ovulated on my own in 12/05 and got a BFP!!  143 lbs at the start of my pregnancy.

Gained 17lbs by 30 weeks and then another 20 in the last 10 weeks (mostly water), for a grand total of 37lbs and final pg weight of 180.

By six months postpartum was back down to 136 - could have gone lower but didn't want to for fear of having HA again.

Didn't get HA, started cycling naturally at 11 months postpartum, BFP on my third cycle trying (using progesterone to lengthen my LP from 8 days to 14+), starting weight for this pregnancy was 136.

Gained a total of 25lbs, final pg weight of 161.

Again no trouble losing the pg weight, got down to about 128 before deciding once again that I didn't want to lose more in case we did decide to have a third child, once again didn't want HA.

Started cycling naturally at 10 months postpartum.  Started trying for a third child at 18 months PP and got pregnant on my first! cycle.  Starting weight of 128.  Found out our baby didn't make it at 10w.  Had gained up to 133.

Lost that over time, kept on trying for a year, finally moved on to IVF.  Lucky enough to get a BFP on our first cycle.  Starting weight 127.

Gained a total of 30lbs this time, to 157lbs.  Lost 10lbs by delivering Truffle, lost another 10lbs by a week later, and then have been losing about a pound a week since.

And now we get to the real point of this post.  I'm now down below my pre-pg weight, at about 125.  And given that we're probably not going to have another child, I'm finding that my motivation to keep my weight up is somewhat lacking, and in fact, there is a not insignificant part of me that is once again liking seeing that number going down.  Amazing that it's still there after all these years.  I have been trying to add in some more snacks so that I dont' lose too much more weight, I think this is a good place for me to be especially as I'm not exercising that much any more.  But still.  I think it's something that those of us who got ourselves in the way of HA will always struggle with to some degree.  We can push those thoughts away for the most part, but not completely.

Have you been able to completely banish them?