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Date of last update: 10/21/2017.

Forum Name: Carcinoid Tumor

Question: False CS Indicators??

 Downunder - Tue Dec 20, 2005 9:56 am

Thanks for this site in a wilderness of Carcinoid Syndrome (CS) experts. The net has become a close friend!

My wife (58 yrs) had, by all accounts, a Carcinoid Syndrome-Red flush breast to face, Severe splitting headache & nausea. There was excessive diarrhea some 4 hours later, then 5 hours later passed out vomiting and diarrhea. BP during this episode was 164/94 & 75BPM.

After one well read Doctor picked CS, a 24 hour urine test (1 week after collapse) produced “201” 5-HIAA (Normal <40). A leaking right ventricle has also been identified.

A CT scan of the abdomen with contrast was carried out- NAD.

With this obviously scary diagnosis she demanded another 24 hr urine test. This was done 4 weeks later producing a result of “15” 5-HIAA (Normal <40) A full blood test, liver function resulted NORMAL. The only indications would be pain in the right abdomen at time various and a feeling of warmth in the face occasionally, but never that RED colour.

– Can one have a Syndrome and a high 5-HIAA, reading which then RETURNS TO NORMAL?
– Or is this a result of the fluctuations that are spoken about?
– There seems to be a bit of confusion about the frequency and scale of real fluctuations of 5-HIAA levels. What is considered a dangerous or conclusive level?
– Will a third urine test be conclusive? If so how soon should it be carried out?
– Is this the best test to confirm one does NOT have CS or should one use upper & lower scopes or go straight to the OctreoScan (yet that seems to only be an 85% hit)?

Thank you again for your efforts on this sight.
 Dr. Safaa Mahmoud - Fri Jul 14, 2006 10:30 am

User avatar Dear Downunder,

Signs and symptoms of carcinoid tumors vary greatly, depending on the location, size, and existence of metastasis. Some cases are asymptomatic and diagnosed accidentally during endoscopic examination.

Early symptoms of carcinoid tumors, (mainly midgut with metastasis), include cutaneous flushing, of the head and neck, a profuse and often colicky diarrhea, wheezy chest, and symptoms of valvular heart lesion.

Patients who have flushing without a large tumor or metastasis are difficult to be diagnosed.

Imaging studies, endoscopy, and increased urinary 5-HIAA can always help to reach the diagnosis.
CT is more helpful for large tumors or metastatic lesions in lymph nodes and the liver.
Endoscopy and endoscopic US have replaced the need for Barium enema and barium follow-through with X-ray.
Radionuclide scan like OctreoScan are of great help as these substances are taken by the carcinoid cells and make them easily seen by imaging.
Although detection of urinary 5-HIAA is the single best screening method for carcinoid tumors, it is not always a reliable test, and the measurement of other blood peptides like serotonin, chromogranin A, Substance P SP are important in such cases.

The urine 5-HIAA test may be strongly influenced by special diet and drugs. This is due to the fact that serotonin is elevated after the intake of certain foods like bananas, avocados, pineapple in addition to some medications. Other drugs are known to decrease the level of 5-HIAA as well. Thus,The patient must be on a special diet before and during the urine collection for the 5HIAA test.

Worth noting that, in many studies, non specific elevation of the levels of 5HIAA were found in cases of diarrhea due to irritable bowel syndrome, microscopic colitis, inflammatory bowel disease, laxative abuse, or pancreatic insufficiency and other unexplained cases of diarrhea. In another study patients with appendicitis showed also nonspecific elevated level of this hormone.

I advise you to take an appointment with a consultant for complete examination and further investigation.

Best regards,

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