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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

very high IGF-1?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › very high IGF-1?

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  • October 3, 2013 at 9:35 am #592
    victoriafaith
    Participant

    Hi all,

    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?

    Thanks much!!
    Victoria

    October 5, 2013 at 9:43 pm #4484
    Dr. Diana
    Keymaster

    Hi all,

    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?

    Thanks much!!
    Victoria

    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? 🙂

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