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Replies to "Did you actually have a neuroendocrine tumor or carcinoid syndrome??im suspecting that too? What tests did..."
Datotate Pet Scan. I had a chromogranin a that was off the chart, same with gastric level. Flushing,severe abdominal pain,had a positive octreotide scan showing something on the pancreas. However, no one could ever locate the tumor. My doctors here said NET and carcinoid syndrome. I didn't believe them because without a tumor to biopsy it couldn't be proven. When the doctors at Mayo saw me they were questioning if it was NET and carcinoid syndrome. After many test the Datotate scan ruled it out. Now it's SIBO,still something up with the pancreas,BAM and a couple of other things being looked at. Thankful NET and carcinoid syndrome were ruled out.