Carcinoid?

I have not been diagnosed yet but my story starts in Jan of 2005 when I started getting flushing.  Since I am 45, I assumed at first that it was hot flashes.  It happened once or twice a month and seemed to be worse each time.  The last time it happened on May 11, I was right near my dermatologists office so I went in for him to have a look.  He thought it too severe of a flush to be hot flashes and sent me for a urine test for Carcinoid Syndrome.  That test came back normal.  I then went to my endocrinologist (have a thyroid condition).  He took blood test which was normal for estrogen and thyroid.  He sent me for a histamine urine test which has come back high.  He is also sending me for a repeat of the carcinoid urine test.  I have not spoken to him yet about the high histamine (learned my results from a friend in the lab!).  Needless to say, I am freaking out now because I have read that high histamine is also a carcinoid symptom.  I do not have any other symptoms related to carcinoid except for the flushing.  I should tell you that my mom had pancreatic cancer if it helps.  I was also told I should probably go for an abdominal CT scan.  What would you suggest?  And how do you see this?  Thanks

[Kevin Pho, MD]

The urinary test for the 5-HIAA metabolite is normally the initial screen for carcinoid syndrome.  The test has been shown to have a sensitivity around 75% - meaning that it will miss 25% of cases.

Another option would be a blood serotonin concentration which is a more sensitive test.

If either of these tests are elevated, you can consider imaging studies.  Two tests are normally used in conjunction with each other - abdominal CT and the indium-111 octreotide imaging.  

You can discuss these options with your personal physician, or in conjunction with a GI physician.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
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