Hypothalamic amenorrhea if you’re not “fit” or “thin”?

Some women (like me) read a general description of hypothalamic amenorrhea as being caused by undereating and overexercising, and immediately know that’s their issue. In my case, I was exercising a minimum of two hours a day. I loved my sports, and played ice hockey 3-4 times a week, volleyball 1-2 times, biked to work a couple days a week (15 miles round trip), lifted weights 2-3 times a week, played squash with my coworkers, and golf (no cart for me!) on the weekends. And then I decided that I should lose some weight to have a healthy pregnancy and severely limited my calories (dropping me from a BMI of 22 to 19.5). Whoops, instant HA!

Others, though, it’s not nearly as clear cut. In a woman who’s only exercising 3-4 days a week, or whose BMI is 22, 23, over 25… doctors and other health professionals will often say, “Oh, your weight and exercise are fine.” The thing is, though, that when a woman has hypothalamic amenorrhea, both exercise and weight (as a symptom of calorie restriction) can be associated. Or perhaps not, and other factors are at play.

First, exercise.  Anyone could look at the amount of exercise I was doing (2+ hours, seven days a week) and totally get why that might cause me to lose my period. But what about someone only exercising three days a week?  That seems totally reasonable, right? And for many it is – but in combination with other factors (post coming soon!), even that seemingly reasonable level of exercise can be associated with HA.

The research for our book included surveying over 300 women who suffered from hypothalamic amenorrhea.  We asked our survey respondents about how much they exercised during the time they had HA, both in terms of days per week and hours per day. The results (306 women) are shown below:

Exercise amounts when women experienced hypothalamic amenorrhea

Each bubble in the center panel corresponds to the number of women exercising for the average amount of time per day shown on the left (y axis), and number of days per week shown on the bottom (x axis). For example, 46 women were exercising 1 hour a day, six days a week. The lighter grey bubbles show the sum of each row or column; 110 total women were exercising an hour a day when they had hypothalamic amenorrhea, 106 were exercising six days a week.

Nine women did not exercise at all, and 9+3+2+20+17 = 51 exercised four days a week or less, about 17% of our respondents. As far as exercise session length, 9+8+46+110=173 (57% of the total) were exercising an hour or less a day.  Looking at both variables together, 42 women, about 14%,  fall into the area that most would consider a *totally* fine level of exercise, an hour or less at a time, four or less days a week.

Another variable that many look at when considering why a woman might lose her period is weight. We generally talk about BMI rather than weight because it takes height into account, but totally recognize that BMI (and particularly the BMI categories) are by no means perfect. But at least it allows for easier comparison of approximate body size than weight alone. As I mentioned, my BMI dropped from 22 to 19.5 during the time when I acquired HA. I still don’t think that people looking at me would think I was “thin enough” to be missing my period, and I was slightly above the median from our survey respondents which was a BMI of 19.0. However, notice that there are people who had HA with a BMI of 22 or above (7.5% of the 286 women who provided data).

Range of BMI when women had hypohtalamic amenorrhea

So it turns out that having hypothalamic amenorrhea is not so much about how much you weigh/your BMI (although that is a component, for sure) but more about the five factors that in part lead to that weight:

  • amount and intensity of exercise
  • food restrictions (amount and variety)
  • weight loss
  • stress
  • genetics

And I will cover each of those in my next posts!  In the meantime though, I hope it helps to know that I was able to regain my period and get pregnant after gaining weight and cutting exercise (and four failed injectable cycles trying to get pregnant, oh, and 18 months…) but at the time there was no guide as to how much more I needed to eat, how much weight to gain, what exercise levels were acceptable. So we ended up writing our book to provide those answers and many more.

How about you? If you have or have recovered from hypothalamic amenorrhea, where did you fit on these graphs? What did it take for you to recover?


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