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Looking for neuroendocrine tumor (NET) with carcinoid syndrome support
Neuroendocrine Tumors (NETs) | Last Active: Jun 28, 2022 | Replies (12)Comment receiving replies
My PCP ordered a 5HIAA based on his opinion that I have carcinoid syndrone. It came back in the normal range today. I do not know if that means I don't have cancer or what. I think I read on one of the medical clinic websites that one should go ahead and run other tests such as chromagranin-A (CgA). I live in a rural area with overworked PCPs. Any direction on this? My GASTRO says I also have EPI which I am having trouble finding a medicine I can tolerate. I wish I lived near a large city where I had access to specialists. I am just lucky that a GASTRO is 200 miles away. All other specialists are 3-400miles away. Appreciate any advice.
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Hello @hopeful2
More than one test is needed to determine the possibility of carcinoid. Has your doctor ordered a serotonin blood test? A high serotonin level can also be indicative of a carcinoid problem. If your GI specialist is not nearby perhaps you can ask for a video consult. This might be a good option.
Given the EPI problem, have you had a CT scan or an MRI of the stomach?