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