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About hope

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  1. ectopic just means "other than in the pituitary". it could be anywhere in your entire body. is your cortisol high? docts dont understand ACTH levels anyway. they could be high low whatever & u could still b ectopic,
  2. MelissaTX i am a huge fan of yours as well as the rest of you who push thru the pain to help all of us. I refer to your struggle often when i am trying to help others who may relate to your decision on having a baby pre surgery or post surgery. I am very happy when my brain fog lightens and i am able to type. i highly recommend the octreotide scan. it saved my life. it should be pushed whenever possible. i say pushed because even though its in the protocol many doctors refuse to do it. I encourage the curious to ask any question at all about my case. if i havent answered some please remind me
  3. re: Hope, did they know for sure that you had an ectopic source, or did they initially believe it was pituitary? the endo said he was sure it was pituitary. the brain surgeon said no way it was pituitary after looking at at least 7 different brain/pit scans. everyone agreed the adrenals were clear. they all had varying opinions on the IPSS & CRH tests. all my family did was look up the protocol in the new england journal of endocrine medicine that said next step look for ectopic source via octreotide scan. convincing the doctor to give me the scan saved my life. i am not a doctor ju
  4. i read an article that was about the many different causes of empty sella one of them being thyroid cancer. it lead me to a link i will post here about an ectopic ACTH source in a vaginal lining malignancy. I have found in my own studies that it is beneficial to be vigilent about rooting out the source of our cushings. some doctors just want to offer multiple band aids. like in my case. doctors suggested removing my pituitary gland or my agrenal glands or trying to sustain me w/tons of insulin & hight blood pressure meds or ketoconazol. they did not get that i had 2 little ones to take car
  5. have u been to see dr. woltering in new orleans? just asking cuz i dont know many other men 1families i feel we r underdiagnosed. i know of support groups if u need one. hope u r well. i was reading a very old post of yours. wanted to reach out.

  6. JenS

    So, he just wants me to blast my body with HC, weight etc. be damned - and forget everything else. I am less than happy.

  7. JenS

    I saw Dr Snyder today. He told me I never had Cushings ever and that my pathology was normal (he considers cortitroph hyperplasia even if it is ACTH secreting not to be a source of Cushing's) so in his mind, my BLA was medically unnecessary. That being said, I now only need to boost my cortisol up and I would feel better. This completely ignores my ACTH that has been rising anyway, and is a...

  8. JenS

    Hello Hope/Maggie Mae!

  9. u inspire me. my daughters dance teacher told us recently that inspire means breath.thanks for breathing some life back into me. thanks 4 supporting all of us.

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