Carcinoid syndrom - liver metastasis?

[scared1410]

Male 49: 24 hour urine test revealed high levels of 5 HIAA, CT indicated a small spot on the liver. Blood test CgA negative. Symptoms: bone and muscle pain (firts time some 14 years ago, disapeared and now appeared again). No other obvius symptoms of a carcinoiud sydrom such as frequent flushing, diarea, abnominal pain, weight loss...can it still be something else? Docs sent me to PET scan as a next step...

[birduck]

hi, i'm 70, just found out i have carcinoid tumors in my liver, one is 8cm, one 6cm, one 4cm, and several small ones.  I have completed three shots of octrestide (sp?) and starting the once a month shots.  Would like to know what is ahead and talk to someone who has had my condition for a longer time. thnx birduck

[Hannahmoo]

I have been having many joint pains (especially lower back, spine  and neck along with abdominal pain (LRQ AND URQ), occasional flushing and headaches forone year now!
I had a slightly elevated blood serotonin but normal 5HIAA and ChromograninA. I have has many scan including a negative octreotide scan. They did see a "lesion" on a CT Scan and said it didn't look like a classic carcinoid tumor or hemangioma so they sent me for an MRI...and that said hemangioma.
I just had an endoscopy and colonoscopy last week and I am waiting for the biopsy results but the gastro MD said he didn't see anything that stood out! I am beside myself wrrying that they are missing carcinoid somewhere. I was told by a carcinoid patient that all her tests came back normal and she indeed had a lung carcinoid.
I think it's really important for everyone with symptoms or an elevated blood marker to keep looking and push for more tests.
What other tests have you other posters had for this? I would be interested to know. I am relly in need of answers as my quality of life has changed so dramatically. Is it possible to have an octreotide scan that negative and still have carcinoid?

[gpwanderer]

How high can those foods elevate the test results?

My doctor had ordered a HIAA 24 hr urine test (she didnt actually tell me why before hand, nor to stop eating certain foods) and it came back elevated 14.8mg.

I have to wait till next week to talk about this, and I'm freaking out a bit.  I do eat bananas and walnuts and tomatoes fairly regularly, but not really that much

I've had GERD symptoms and frequent jabbing pains in throughout the abdominal area for the last few months.

I also suffer from palpitations which due to anxiety and panic attacks.  

Is there anything else that could cause an abnormal reading?

I am taking Coumadin (DVT + Factor V Leiden), atenelol (small dose for palpitations and positive tilt test) and Protonix (for reflux)

[CalGal]

Did you make sure you excluded ingestion of substance known to elevate 5-HIAA levels - bananas, plantain, pineapple, kiwi fruit, walnuts, plums, pecans, avocados, guiafenesin, and acetaminophen? Supposedly the specificity of this test is quite high after exclusion of the ingested substances.

I understand that plasma and platelet serotonin levels should also be elevated in the setting of carcinoid syndrome, so have they been measured?

If you do verify carcinoid, please seek out specialists in the field. This problem is not one 'just any doctor' can handle and it means you should seek out the best in the business.