Discussions By Condition: I cannot get a diagnosis.

Carcinoid Syndrome symptoms

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: aperson
  • December 3, 2006
  • 02:42 AM

I cannot get a diagnosis. Please help. I have been having symptoms of carcinoid syndrome for a very long time. Recently I've been breastfeeding and that's somewhat improved my symptoms. I feel all of those hormones leave my body. I feel hopeful for the first time in a while. I've talked to my doctors and other people for a while and they all seem stupid. My doctors act like they've never heard of this before and it makes me feel stupid. I feel like elated at first after eating especially certain foods, flushing that's bad sometimes, and terrible other times, confusion and then usually get a huge headache... and other symptoms. I can't tell what's going on w/o diagnostic testing and my doctors seem totally disenterested in testing. So, I went directly to a lab to have a 5-HIAA test. Strangely and to my surprise it was normal. Now I feel really stupid. But it's supposed to only be an accurate diagnostic tool in only 75% of people. You have to do blood tests or other expensive tests... I just really want a doctor who is experienced in circumstances like mine to listen to me, test me, and offer realistic therapies and solutions. Why are these smart doctors so stupid! Ughhh... so I'm stuck to self medicate and manage on my own. So what should I do now. Do they sell octreotide in Mexico across the border? I would really like to know... what should I do. There's a minority of people who have a genetic problem with converting seratonin to 5-HIAA. So, they feel the seratonin effects and it's not converted. Maybe that's what's going on with me. But I can't find out if I'm not being tested and looked at. I can't get medicine to help this, whatever the exact problem, w/o a doctor helping me. I made a list of medicines that could help and maybe someday I'll drive to Mexico to try to buy them. Does anyone want to come? It's my last desparate resort... I hope one day I'll be able to hold a good job and that's so hard with these horrible disabling problems that noone will listen to.
Some patients with carcinoid may lack the metabolic machinery to convert serotonin to 5-HIAA, so they have high blood levels of serotonin but normal urinary 5-HIAA.5 Dietary factors may cause confusion; the patient should therefore receive a diet free of the culprit items.-http://www.clevelandclinicmeded.com/diseasemanagement/endocrinology/flushing/flushing.htm

- Unhappy Person

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2 Replies:

  • Now that I've detailed my troubles with some unknown cause... where do I begin looking for help?- aperson
    aperson 1 Replies
    • December 22, 2006
    • 04:37 AM
    • 0
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  • aperson, you haven't really detailed your problems, all you have said is that you get some symptoms which you think match up to carcinoid syndrome. Whatever these symptoms are, it is almost certain they could be caused by something else also. You don't say what your doctors think it might be and it sounds like you have decided on carcinoid syndrome yourself. If you are right, then it means it is caused by carcinoid tumours and injecting yourself with Mexican drugs is not going to get rid of them. If you really want to pursue it, then you will need to fork out for the expensive tests. But it might be more helpful if you tried to find out what your doctors thought was the problem. Incidentally, you shouldn't take octreotide if you are breast feeding or if you have sugar balance problems (which sounds like they can't be ruled out in your case).
    Anonymous 42789 Replies
    • December 22, 2006
    • 07:22 PM
    • 0
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