Discussions By Condition: I cannot get a diagnosis.

possible carcinoid syndrome

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: aperson
  • June 26, 2007
  • 08:23 PM

To everyone here,
I definatetly have carcinoid syndrome symptoms. I have symptoms like terrible stomach pain and feeling "high" after eating.
After a lot of thinking about it I asked a reputable online dr. kevinmd.com and he told me it sounded to him like carcinoid syndrome. I'm just trying to find remedies to help day to day. I feel "high"after eating and you'd think that would be fun but there's the intense stomach pain, flushing, mental symptoms, and after a while I just have this terrible headache. By the way, feeling "high" or "very happy" and then sleepy, daily for a while sounds fun but it's not b/c it's hard to function daily and get what I need to get done. It' s not fair. I had an ultrasound of my vital organs, and a barrium swallow that showed nothing. I had a mail order 24 hour urine test that was normal. However, I've read that in some groups of people the seratonin is not converted to 5 HIAA and so there's a high amount of seratonin in your bloodstream. People have joked about how I'm "very happy" for periods during the day for years and what can I say? I can't control that or stop it or anything I'm helpless and I really want to do something about it and get on with my life. My parents get mad at me but I can't help it. This happens every day and I just want to stop it and get past this but I have no control so I need to get some medicine. If anyone has any ideas or anything please tell me. I need to have my bloodstream tested for seratonin but I don't have much money... I just need to find some medicine so I can work and make money. Please, I'm desparate tell me anything. I've tried antihistamines but they just make me even more tired. I'm very interested in this subject so respond if you have anything to say about it. Maybe I should just become a doctor and then test and treat myself.

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4 Replies:

  • There are probably some really helpful people at the local health food store that can look up all your symtoms in a homeopathic book or online and you can try the remedy. It would cost under $10. I think there is a really good one for you so don't give up hope. When you are older, or if your parents will pay, an acupuncturist may help you a lot, too.
    Monsterlove 2921 Replies Flag this Response
  • Could you possibly be bi-polar? I know the highs are fun, but the lows really are affecting your life and your relationship with your family. Ask your friends if "happy" is a code word for manic. There is no one more energized, or elated than someone with bi-polar, and the reverse is true. Nothing more sad and unhappy and non-functioning when you are down.
    rad-skw 1605 Replies Flag this Response
  • I had several Carcinoid symptoms too!!!! I even went to Roswell Park Medical Center in Buffalo NY for a week's worth of testing to be told I did not have it, by one of the top Oncologists in the country. 5 other doctors had agreed that I had Carcinoid, so I went for the testing.Only 5 of my symptoms were carcinoid. The other 70 symptoms were chronic fatigue syndrome. I was convinced I had carcinoid and would die in 5-8 years. Now I know I have CFS, I am learning what to do in order to help myself and I will live much longer than previously thought.I wish you well...stick around, you are not alone...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I also have a long list of symptoms, many of which suggest carcinoid, and my doctor even thought I may have it. I was ready to cut right to the chase and get an octreoscan. That is the scan with nuclear isotope to visualize any carcinoid and some other type tumors. But I instead got re-tested with the urine 5HIAA 24 hour test and also had the CgA blood test for carcinoid. They were negative. I know I have something wrong but now am not so sure it is carcinoid.I would recommend you at least get the main tests for carcinoid, Urine 5HIAA and blood CgA. Then if your doctor agrees and your insurance will pay the other tests that may diagnose carcinoid are blood serotonin, neuron specific enolase, calcitonin, pancreatic polypeptide, substance P, and others. Imaging with CAT scan and MRI may also help but the tumors are often too small or just don't show up.A good place to look on the web is www.carcinoidinfo . Good luck.
    Anonymous 42789 Replies Flag this Response
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