Carcinoid Syndrome Support Group

I'm 39 and have negative blood and urine tests. I also have flushing, chronic diarreah,

fatigue, big fluxuations in blood pressure and am sick all the time. I have

every symptom of carciniod and the blood is coming back normal, even the

ostreoscan didn't find anything. Has anyone experienced this? I read about

carciniod tumors frequently because I was diagnosed with the syndrome after my

initial tests came back 5 and 7 points above the norm. BUT upon retesting several

times during fasting urine was fine cga was fine and etc. Please shed some light

on my case. I have dibilatating symptoms and feel like I can't go on this sick

anymore.

This happened to my mom also, they didn't find anything in the blood, so it took a longer time to diagnose it, but later found it with scans. Then they took a biopsy from her liver and confirmed the diagnosis. Hope you are well, though.

Shannon88,

Yes. There are a small number of us whose labs are in normal range. There's debate as to whether or not ours is cyclical and we're not always "catching" it when it's happening. High levels of calcitonin can also create symptoms very similar to high levels of serotonin. My levels of serotonin were normal even after my biopsy - we could see it on the octreoscan - while the tumors were in my body.

But I was miss diagnosed for 6 yrs. I had carcinoid syndrome starting in 2004 - although we didn't know that's what it was. In January of 2010, I went to my GI dr, thinking that I had gallstones or an ulcer. By Feb 2010, we found my primary and biopsied it. It was missed for several years on several scans. And I was initially dx'd with IBS for many yrs.

You can try to see a carcinoid specialist, but may not be able to get in yet without a dx. Hang in there! See if you can at least get on the Sandostatin shots. That will at least treat/manage your symptoms - which is half the battle with this cancer... Other than surgery, it's all about managing pain and symptoms. Keep us posted on how you're doing!

My best,

Jen