hi jesimesi, i suggest you go on thewww.ACOR.orgsit e and register in the email carcinoid group. you can post your questions to dr. gene woltering and he will respond. you can also call him for advice. he lists his phone number. dr. woltering works out of kenner, louisanna, as a carcinoid specialist.
also go onwww.interscienceinstitute.com . you can request a copy of Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management. it is free and no shipping charges. it is also available for download. the book contains the info on symptoms, tests, and codes. it is a valuable tool.
another site to try iswww.carcinoid.org . you can find specialists to go to on that site. it states much about carcinoid.
there are other tests and scans that are very helpful in determining carcinoid but i imagine, usually, a biopsy is necessary before declaring you a carcinoid or NET patient.
be the squeaky wheel! advocate for yoruself and explain your issues to whomever will listen and help you.
keep me posted. keeping you in prayer.