Connect
24-hour 5-HIAA reliability for diagnosing NETs
I've had over a year of carcinoid syndrome symptoms, like flushing, weight loss and bowel issues. If you've been diagnosed with NETs, did the 5-HIAA test detect it? The test's sensitivity's supposedly 73%, but I'd like to hear personal experiences. Also, did your collection jug have anything in it, a small amount of preservative (not sure if it's powder or liquid)? Any help appreciated.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
The 5-HIAA urine test is a valuable tool for diagnosing and monitoring carcinoid tumors. However, it is important to note that elevated 5-HIAA levels can also be caused by other factors, such as certain foods, medications, or medical conditions. If your test results are abnormal, your healthcare provider will discuss them with you and recommend further evaluation or treatment as needed.
Thanks, Tom. I avoided all medications and foods that could affect serotonin. I was hoping to hear whether anyone has had false negative 5-HIAA results, because my results were negative. Yet I'm down to 94 lbs and have had carcinoid syndrome symptoms for at least a year. I can't find a neuroendocrine specialist locally, so hoped to hear patient experiences. If this test is conclusive (I pray it is), then I need to look elsewhere for answers. This is why I reached out.
In my experience, no test is conclusive or inconclusive unto itself. I personally have had the 5-HIAA test. My oncologist views it as a small part of the plethora of tests and scans he reviews in diagnosing and treating cancer. I was diagnosed with a pancreatic neuroendocrine tumor that spread in 8/2022. I have been on chemotherapy since. I have had the 5-HIAA test once during the very beginning of treatment. My doctor dismissed the results as "insignificant". What other tests/scans have you done?
Just now saw your response. Besides the 5-HIAA test, I had an abdominopelvic MRI with contrast, which was negative. My bloodwork (CMP and CBC) was normal, so the nurse practitioner said this rules out all metastatic cancers. I wonder if she's correct. My only other imaging order is a CT with IV contrast; it hasn't been completed yet. Meanwhile, I haven't gained weight, though I'm trying; and I have the same symptoms.