I’m 24 and have severe hypermobility EDS with some overlap of classical. I’ve had a progression of increasing joint dislocations over the past year or so, especially the past 3 months.
I know many EDS’ers report menstrual-cycle dependent symptoms, and I have seen this as well. I had my hormone levels tested to see whether anything was off and could be contributing to the recent instability.
My estorgen and progesterone were fine, but DHEA was low, testosterone was low, and IGF-1 was 351. That IGF-1 level puts me at the expected level of a man, taller than 97.5% of the male population. As I’m a 5’2″ female with a wrist no larger than it was when I was 3 (I really have minuscule bone structure), this was a bit surprising!
Has anyone else observed high IGF-1 levels in EDS?
Hi Victoria! And welcome! I’m dying to hear what others say! I see low DHEA, cortisol, ACTH, free testosterone, but I have never seen high IGF-1 before (unless with supplementation)! Do you know how much $$ I pay to get my IGF-1 levels up? 😉 Really, I haven’t seen this interesting combo before. Assuming it’s repeatable (not a lab error), and you’re not on growth hormone, I’d LOVE to know what’s up and if others have the same thing! Anyone? 🙂