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Is it Carcinoid Syndrome from Carcinoid tumor
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Is it Carcinoid Syndrome from Carcinoid tumor

I have been having flushing for 8 months now and had all my tests done. Tests from last month CBC normal, Bone Marrow normal for Mastocytosis,Lukeumia,Lymphoma. CT of Chest,Abdominal and Pelvis normal. Polycythemia Vera (C3,C4) in range. 5-HIAA, Seratonin in blood in range. Chromogranin A is 8 ( Normal high is 6). I had a colonoscopy in 2010 and Endoscopy last month both normal. I am on Proton Pump Inhibitor for some time. I recently had a full body Bone Scan normal. Do I need to get a Octreotide Scan to rule out Carcinoid tumor due to severe flushing of face,palms,legs and abdominal region  and weakness with some heavy breathing I do not understand what is going on.
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2827584_tn?1340583296
Typically a 24 hour urine collection would be obtained for 5-HIAA before proceeding to the octreotide scan as it should be more sensitive to rule out carcinoid.
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Avatar_m_tn
Hello Dr.Watters

I had 2 5-HIAA in the past two months and both were 3.5 MIlligrams (Range 3 to 15 milligrams). Is Octreotide Scan my last option. Does it have harmful radiation effects in the long run.

Thanks
Smith
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2827584_tn?1340583296
The radiation is quite minimal and the risk close to none. The yield would also be low if your urinary 5-HIAA's were normal.
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Avatar_m_tn
Thank you Dr.Watters,

Its been 1 1/2 years and I had one more CT scan in April 2013 and the scan did not show any carcinoid tumors. Does the radiologist look at every abnormality and report it or only look for what the PCP wanted him to investigate. I had a endoscopy on July 2013 and found that I had "Minimally inscreased lymphoplasmacytic cells in the lamina propria".  The skin flushing turned out worst in the past couple of months would you suggest I repeat 5-HIAA, Cromogranin-A (I am on PPI's) and a Octreotide scan (Will be my first) to once and for all rule out Carcinoid tumors. Bowels smell bad (like sulfur and flatulence). Do you suspect and suggest additional tests for diagnosis. I am under extreme stress.
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Avatar_f_tn
Just a note, not all neuroendocrine/carcinoid tumors light up on O-scans. They won't if they do not have the receptors. Mine did not show up, yet when removed were positive for carcinoid. I think it's important to keep that in mind so as to not eliminate the possibility of a cancer based just on that scan.
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