Hi Corvus, and welcome! It sounds like you’ll need a few tests to figure out what is going on… I’m curious if you or your sister were able to figure out what your Beighton score of flexibility was? That may be telling. As far as hormones go, I think most of us here have “endocrinology gone wild”. Forgive my stupidity, but I’m not positive if you are a guy or a gal? I’m guessing a guy? Interestingly, I started on testosterone almost 10 years ago as a sort of ‘experiment’ to see if I could avoid the muscle loss experienced by most women when they hit menopause, and then just seem to fall apart. Interestingly, my FREE testosterone usually shows as low, even on supplementation. I continue taking it most of the time, but still lost a lot of muscle mass suddenly. Ugh. I’ve heard from patients who have both high AND low levels of testosterone. As far as estrogen goes, I don’t know! I’d love to hear from other on this! It may be helpful for both of us, if you could fill out the Symptoms Checklist found under “Articles and Handouts” and shoot it back to me at the email mentioned there. We may be able to see what is happening. So sorry you are suffering. 🙁 Have you watched any of the videos I have about EDS to help you figure out The Beighton Scale, etc? Some of those may be helpful. Thanks!