VIPoma testing

[sparrow1313]

I have just had the octreotide scan after having two VIP blood tests, one of which was normal. I have been through MRI, CT scan, Ultrasound, Colonoscopy, Sonogram, X-Ray, Hitascan, Interoscopy, Endoscopy,(both with ultrasound) had my gall bladder removed and nothing has revealed a cause for my upper right quadrant pain under the ribs and mild nausea with diahrea. I have also been having extreme lower back pain. When I have a normal bowel movement it feels as if my intestines are burning inside and it remains sensitive for hours.Tests of the pancreas show an abnormally large head of the pancreas, but no tumors have been found. I did have H.Pylori but took meds for that. Negative for C.Diff. I am very depressed because of all the stress and medical bills. Is there something my doctor is missing? I understand that the test for Sphincter of Odi problems is a fairly risky procedure. What are my options?
Thank you.


This discussion is related to VIPoma.

[KMyra]

I am confused with what you are saying about the Octreitide scan.  I have had 2 and they came back normal.  I need to research what you mean by if the tumors do not have the receptors for the uptake of the contrast.
I too have experienced the joint pain and fatigue and depression.
I am going crazy I dont know if I should keep searching for answers and keep trying to find someone to help me. Or do I wait. How did you communicate with Dr Woltering.
    

[Hannahmoo]

Hello, I've just read your post and I am experiencing similar symptoms. I have been ill since April 27th when I went to the ER with severe flushing/abdominal pain (upper right quad) and rapid/irregular heartbeat. I have been tested for carcinoid syndrome with both blood tests (with the exception of VIPoma test) and a number of scans. I had a Triple Phase CT scan, MRI, Ultasound, Endoscopy and Octreotide scan...all of which came back normal with the exception of a finding of a small hemangioma on my liver. (which I truly hope is just a hemangioma) A woman with a diagnosis of carcinoid told me that the Octreotide can come back normal if the tumors do not have the receptors for the uptake of the contrast. You may want to ask your doctor the rate of this type of incidence. I too, have been diagnosed with fibromyalgia/CFIDS but that was years ago. I do not experience the watery bowel movements associated with these rare tumors but I do experience the exact pain you're referring to with the burning. Horrible. I've lost 18 lbs. since April. The only blood test that came back slightly elevated was a 5HIAA which the doctor said could be elevated because of a high urine output. I am scheduled for a colonscopy and will insist that he repeat the 5HIAA urine tests as well. I am also deeply depressed over this situation. The Octreotide scan was in excess of $8000.00 and my insurance is not the best. There is a doctor by the name of Woltering in Louisiana who is supposedly one of the nation's top docs with these type of rare tumors. He spoke to me personally and reviewed my bloodwork. Perhaps you could get in touch with him with any questions. Have any of you experienced widespread pain in joints and muscle fatigue with this? I am absolutely perplexed and depressed with all of this!

[KMyra]

I do not have a rash.  I do have flushing once and a great while.  I did talk to another lady from San Fran that has been diagnosed with vipoma but hers tumors showed up on scans.  She recommended Dr. Yee with MD Anderson in Houston TX she did not see Dr Yee but recommended.  I understand 85% of vipomas are in the pancreas but the Doctors think I am in the 15%.  The rare of the rare.  YIPEE  
I dont know what to do.  I am so confused.  I do not have fibromyalgia.  But I wonder if that diagnosis was your vipoma and they didnt know to check your vip count so they diagnosed your symptoms at fibromyalgia

[sparrow1313]

A pancreas specialist told me that I might have a problem with the Sphincter of Odi, but he was not sure. It just seems with all the tests we both have had that someone could find the cause! I do not know of a specialist here in North Carolina, but we do have Duke Medical Center close by. That may be my next move. My digestive specialist md came from the DC area and in her many years of practice has never seen a single case of VIPoma. So we are learning together. I do not present with any rash as some people have reported. Just the quick, watery bowel movements and pain.
I also have fibromyalgia, and have been wondering if there is any connection at all to the pain or hormone count. Any comments?

[KMyra]

Hi
I have the same situation you do.  A high vip count but no tumor yet found.  why would you do the Sphincter test?  I am trying to figure out this message board so I do not know if this is my second message. But anyways I am at my wits end.  I do not know what to do.  I have had every scan and scope there is to have and they cannot find a tumor.  I am on octreitide to slow the uncontrolable bowel and that helps.
As far as the blood work.  It depends on the lab that is being used. I found out here in Nebraksa it needs to be put on ice right away and in a purple vile(and maybe pink) for a correct vip count. Do you have a Dr that specializes in vipoma? or are you a learning process for them. Thats what I feel like.  I am the first case so lets learn on her.  They make me feel like I am crazy.