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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. zhen, Dr. Salvatori as well as one of my mothers doc's said it is very obvious that cushing's runs in my family. Dr. Salvatori said he was so convinced he did not feel genetic testing was even necesary. My mom's doc said he thinks it's on both sides of our family. He said "you know what thats called, a double whammy" My worry for the kids prompted me to consult Dr.Oberg from Sweden who gave me the following: BLOOD WORK & TUMOR MARKERS 1.) Urine 5-HIAA 2.) Serotonin (5-HT) 3.) Chromogranin A (CgA) 4.) Pancrastatin 5.) Substance P 6.) Neurogranin A He said that if our CHILDREN do not show symptoms then they could start regular screenings at age 20 that would include: 1.) serum Calcium 2.) plasma PTH (thyroid) 3.) plasma Prolactin 4.) plasma Growth Hormone IgF-1
  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 just a patient but i do think one of my sisters has an ovarian tumor source. she wont see an endo after witnessing what i went thru & the traveling out of NJ involved. her gyno despite our family history will not remove the tumor on the ovary. i would like her to have it removed w/an endo present in case she crashes. oh and ... http://search.yahoo.com/search;_ylt=A0oG7iddNFhP1kkAUOdXNyoA?p=crh%20showing%20ectopic&fr2=sb-top&fr=yfp-t-521
  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 care of. i wanted to stop my body from rotting. i knew i had little time left. i did not want agonizing prolongment. i wanted the SOURCE of the cushings hunted down & cut OUT of my body. in my hereditary type of cushings even removing a small portion (debulking) of the tumor, mass, cyst, watever your radiologist wants to call it, can save or add years to your life. it is hard to find such an agressive doctor. in my case it was my sisters who stood up to doctors. demanding they order a full body octreotide scan where they found the source of my cushings, a lung tumor that did not show up on other scans. the tumor can be ANYWHERE in your body. It will produce many different hormones not just ACTH. it can be the size of a spec of dust. Looking for these other tumor markers or hormones in 24hr urine catches besides just cortisol can put us closer to our cure. since i am posting a research link i picked this forum. if it is misplaced i apologize. please see this research link: http://lib.bioinfo.pl/pmid:9190988 our illness is not rare but doctors are not taught how to diagnose it. sometimes they need our help. we need to educate ourselves. my education on this website led to my cure. thank u MaryO for giving us this medium.
  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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