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...