Hi I was diagnosed with Castlemans disease 10 years ago. I recently have been diagnosed with small intestine carcinoid and carcinoid syndrome. My question is about the blood and urine test results. Mass General did a chromogranin a blood test and a 24 hr serotonin test (my 5 hiaa came back normal). My chromogranin a came back at 1385 labrotory states should be less than 225, and my 24 hr urine serotonin came back at 6829 when it should be 210 or less. Anyone ever hear of numbers this high?? I've been scouring the internet and not getting anywhere. My carcinoid syndrome symptons are severe my bp is 70/42.. I have a temperature between 100 and 102 constantly it gets higher with stress and activity. i have wheezing and bronchial constriction, severe diarrhea and vomiting (always being admitted for dehydration and electrolyte imbalance. The flushing is embarassing, I had surgery 10 years ago to remove a tumor from my lymph nodes outside my pancreas and a liver resection due to tumors and an appendectomy. I also have svt and afib.
Both serotonin and chromogranin are likely to be elevated as a part of the carcinoid syndrome. 5-HIAA is a degradation product of serotonin and may not be elevated in all patients. I would suggest discussing the situation and the appropriate management plan in detail with your treating doctor.
Hope this is helpful.
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