I am a 26 year old female trying to figure out my amenorrhea and weird fatigue symptoms. I have been to a whole bunch of doctors and am trying to get new ideas about doctors/supplements/books/whatever to pursue. I looked on Paleo Hacks but the other amenorrhea questions seemed to involve over-exercising or a history of eating disorder/rapid weight loss/VLC diet, and none of that applies to me.
Two years ago I stopped getting a period and have been diagnosed with hypothalamic amenorrhea. When I was diagnosed, my estrogen tested low, and my T3 tested just a bit low. I am on an estrogen patch now and small dose levothyroxine and it helps somewhat but not completely. I don't have PCOS, I don't have ovarian failure (FSH was normal). I just did a "progesterone challenge" and did not get a period.
In addition, shortly after I lost my period I started having weird fatigue type symptoms that kind of come and go. I used to exercise moderately 2-3 times a week and really enjoyed it, but now I just feel like I have no power/energy a lot of the time. I haven't been able to work out the past two years really at all, and when I do, I feel really run down and tired so it isn't worth it. I just feel like something is wrong when I try to walk up stairs. Or for example when I'm in the store and am reaching up to look through things on the top shelf, my arms feel tired. But my symptoms aren't totally constant-- ie. if I get a burst of adrenaline or something, I feel pretty much physically normal and can run or something. It's more day to day that I feel run down and weaker. Occasionally I have a couple of weeks where I can start going for slow runs again a couple of times a week and it feels great and normal but then the fatigue comes back.This doesn't seem to be a thyroid thing -- when the thyroid medication dosage is upped, I get jittery/energetic etc., but I still feel the same when I try to work out.
I've never really exercised more than 2-3 moderate intensity workouts a week, and I have no history of an eating disorder. I've been at a pretty average weight (5 foot 3, 120 pounds) my whole adult life. I've been eating pretty strict paleo for 2 years now. I started eating paleo around the same time I stopped getting a period for other reasons (mild stomach issues my whole life, paleo resolved it right away). Autoimmune paleo protocol doesn't do anything really to change my symptoms. I usually eat about a sweet potato or bowl of rice a day worth of starch. Other meal staples are grass fed beef, ghee, greens, salmon, tuna, eggs, etc.
An MRI a year ago initially looked like maybe I had a pituitary adenoma but after a second MRI I was told it wasn't a valid finding.
Where should I look for new ideas to pursue? I am really frustrated trying to understand this all by myself and come up with new ideas when doctors haven't been able to help...
Yes, if you have the resources find a doctor who will give you leptin therapy http://www.nature.com/ijo/journal/v27/n7/fig_tab/0802292f1.html
When you weren't eating enough, your body went into survival mode, shut down your period, and made you conserve energy, the way it knew to do that was because there was very little leptin being transmitted to the hypothalamus, which is how the body communicates energy-availability. Leptin therapy basically just gives you a ton of leptin so your body sees that it is a "time of plenty" again and it can resume normal functioning.
The other thing is just to eat a lot and eat healthily with enough of all nutrients, I'm sure that was obvious, though.
I am curious about how much sun you get.
I am not suggesting that I have an answer or even a place to start looking for one. But....
I do know that in unusual circumstances actual "sun" treatment helps to resolve some feelings of exhaustion. Especially if you have had lower vitamin D. It is really interesting how much adequate sunshine can effect your health.
Mark Sisson- (Primal Blueprint) has several links to studies about sun light as well.
Can you post what supplements and any other Rx meds that you are taking?
I cannot believe how similar our stories are. I was incredibly fit, and noticed I was having trouble recovering from workouts, same time my period start, this was a year ago. Long story short, I havent touched a barbell in 6 months, can barely walk up the apartment stairs and just feel way off most of the time. I will be starting the progesterone challenge in a couple weeks but seems like you didnt have any luck either. Any new developments? I also have been strict paleo for almost a year now and gluten free for over 2 years. So frustrating, miss being athletic.
Are you sure about PCOS? If not 100% sure, Stefani Ruper's guide seems to be really amazing for lots of women like us. I think there's an intro section to see if it might be helpful.
It's $50, fyi. So not free, but less than a doctor's office visit. Not shabby.