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Posts posted by mbinig

  1. I have had 2 failed pit surgeries that never turned up an actual tumor. I desperately want the octreoscan, and my husband agrees. The doctors all refuse to do it, and my husband is getting very angry over this. My acth is never high, so no doctor thinks it could possibly be ectopic. I disagree. I don't think there is enough known about this disease to say for sure that it can't be ectopic.


  2. I would wait a few months. I say this, because it seems that I may be one of the delayed cure people. I had my 2nd pit surgery last Dec., at which time they removed 40% of my anterior pituitary. The morning after surgery, my cortisol was 30. By the time I was released 5 days later, my am cortisol was 17. By February, my am cortisol was 3, and I've been on replacement steroids ever since. My surgeon and endo said that the trauma from surgery can cause a lot of acth to be released. Time will tell if I really have a cure or not.


    So, I think you are still very early out from surgery. Maybe think about giving it a little time before the next step.



    Melissa B.

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