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Differentiating Carcinoid syndrome from MCAS?

Neuroendocrine Tumors (NETs) | Last Active: Jun 6 8:56am | Replies (17)
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@vinnie694

The only effect I have with carcinoid syndrome is flushing heat , my face and ears only, before the Lanreotide injections I was flushing appropriately 20 times per day. After injections 7-14 times and the intensity has diminished. I do experience flushing while eating and when I’m still at night.. (Thinking too much). But as long as I’m active and even with exercise I don’t have the flushing.. I believe there is a urine test for carcinoid syndrome ask your doctor , I didn’t have one. The flushing was diagnosed as Carcinoid after my liver biopsy determined I had NET’s.. Also not familiar with mcas.

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Replies to "The only effect I have with carcinoid syndrome is flushing heat , my face and ears..."
debbieguk | @debbieguk | Apr 15, 2023

Thank you Vinnie
Mine is unusual as its not seratonin which comes up in 24 hr cataclodminde urine tests but histamine doesn't get tested in that test. Needs to a specific histamine only test and am not sure how accurate they are. I'm at the beginning of trying to get help for this

I've not been scanned yet so will see if it's indeed a net or nets

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abby84 | @abby84 | Apr 24, 2023

I found out 3 years ago that I have net cancer. Originated in small intestines and went to the liver. About 30 tumors. For the first year I only had been taking sandostatin lar for diarrhea and flushing. Didn't help at all. My diarrhea is keeping me from going anywhere. This supposedly is a slow growing cancer but I have had to go through 3 embolizations where they go in and cut the blood flow to the tumors. Last scan showed new tumors so they put me on ever points 10 mg. Two months and side effects kicked in and they decided to lower dosage 5 mg. Well, it's been two months and of course same side effects. Is there anyone out there with similar situation?

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pmberman | @pmberman | Jun 26, 2023

Did your NETs show up on CT or PET scan or was it via biopsy? I’ve had the scans with nothing seen, but I have the symptoms. Going to get MRI’s next to see if that will find the root cause of my symptoms.

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