Discussions By Condition: I cannot get a diagnosis.

Does high serotonin = carcinoid cancer???

Posted In: I cannot get a diagnosis. 92 Replies
  • Posted By: Anonymous
  • November 7, 2007
  • 06:48 AM

Hi, I'm terribly concerned about a high serum serotonin result of 1724, well elevated above normal range of 0 - 1000. Is there any explanation for this result other than carcinoid cancer??????????

Brief medical history - 38yo female, not on any medications, fatigue for one year, some discomfort and tightness in centre of chest, severe diarrhea for 3 months, various stomach pains for 3 years. Tested negative for coeliac disease. After colonoscopy and endoscopy, diagnosed two weeks ago with crohn's by gastrolenterologist. GP ran serotonin test and have to wait one month before I can meet again with GI for further advice and testing.

Panicking as I have two young children, aged 1 and 3, and after many hours of searching the internet, can't find any alternative diagnosis and desperately do not want it to be carcinoid.

Any suggestions would be most gratefully received.....

Thank you!

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92 Replies:

  • Oh, forgot to include, I also have an ANA titre of 1:640 and have been diagnosed as anaemic!Please help if you can offer any advice, as I am so worried that it seems like the just stress alone is making me feel ill at the moment. Thank you.....
    Anonymous 42,789 Replies
    • November 8, 2007
    • 00:21 PM
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  • Hello,I am not a doctor, but someone in a similar predicament as you except it's my husband who has the elevated serotonin level of 689 ng/mL not nearly as high as yours, and I'm totally freaked. So, without trying to diagnose you, since I am not qualified, I would advise that you consult an oncologist. My husband has had pain for 5 years and been scoped and tested every which way, and only recently did a doc think to do the serotonin serum test. Then the Chromogranin A and 5-HIAA came back as normal, so he said, "It's not carcinoid." When I told 2 other doctors - just simply TOLD them his serotonin blood level - they gave me info on carcinoid. We went to see a GI Doc and we are following his tests, but he flat out said he didn't know nothing about carcinoids. So I called an oncologist and just through talking with his assisstant ( who has worked with hi for a long time and knows ore than how to answer phones) I made him an appointment for a consult based on her recommendation.I recommend you do the same. From my reading, that high of a serotonin level is either carcinoid or a tumor that is producing too much serotonin, or the cells themselves. So don't assume the worst! BUT, talk to an oncologist or a neuroendocrinologist because that much serotonin over a long period of time will according to all the reading I've done, thicken your heart valves. Best of luck to you, keep posting, and I will keep posting anything I find out.~ C
    CerebralGirL 8 Replies
    • December 9, 2008
    • 04:52 AM
    • 0
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  • Try here, but make sure you click "next" whenever it appears at the bottom of the page and read the entire article. http://www.labtestsonline.org/understanding/analytes/serotonin/glance.html
    aquila 1,263 Replies
    • December 11, 2008
    • 04:24 PM
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  • I am currently researching causes of elevated serotonin levels besides carcinoid tumors,but it might take 2-3 days.Next,do you have flushing and diarrhea and wheezing?If so the odds are great that you have carcinoid syndrome.If not and with a negative 24-hr. urine 5-H.I.I.A.and a negative Chromogranin A test(Have these been done?),it would be highly unlikely that you have a carcinoid tumor.:)
    richard wayne2b 1,232 Replies
    • December 11, 2008
    • 08:40 PM
    • 0
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  • I forgot to tell you that if you do have a carcinoid tumor,an Octreoscan should be used to locate it.:)
    richard wayne2b 1,232 Replies
    • December 11, 2008
    • 09:08 PM
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  • Hello again.I'm pleased to tell you that there are some other causes for an elevated serotonin level besides carcinoid tumors. I can't remember them right now,but I got the answer from a lab online.I'm afraid that if I return to it,I won;t find you again,but I'll try to get you their website.:)
    richard wayne2b 1,232 Replies
    • December 12, 2008
    • 10:25 PM
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  • How great!I found you again,and I have some information for you.First my source was the American Society for Clinical Laboratory Science.They said that there were ''large amounts of serotonin''in the following:tobacco,tea,coffee,avocados,bananas,tomatoes,plums,walnuts,pineapple, and eggplant.Plus the lab said to not ingest any of these 3 days prior to ths test.So,there's hope if you ingested any of these things.:)
    richard wayne2b 1,232 Replies
    • December 12, 2008
    • 10:49 PM
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  • Aquila, thanks for the website reference. Wayne2B, yes he has flushing, diarrhea, GI pain, chronic fatigue, joint pain, night sweats, nightmares. He does not eat any of the foods you mentioned, nor does he drink alcohol or caffeine or smoke. The flushing is totally random and seems to be getting worse. We're scared and right now he won't go to the doctor, because he's sick of them. But soon, we'll get blood tests redone and see GI doc again (negative colonoscopy, upper endoscopy, small bowel series, celiac sproue, stool smears for white cells) and also see the oncologist.Please keep the posts coming. Freaking out over here!Thanks,CG
    CerebralGirL 8 Replies
    • December 15, 2008
    • 07:53 AM
    • 0
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  • Well,I'm afraid that with the flushing that it is carcinoid syndrome,but they all aren't the same degree of seriousness.
    richard wayne2b 1,232 Replies
    • December 15, 2008
    • 02:31 PM
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  • The same degree of seriousness? Not really sure what that means. . .Is carcinoid syndrome a definite diagnosis of a carcinoid tumor?Or could you have the syndrome without the tumor?I am also confused as to whether the carcinoid syndrome is a result of a metastisized tumor only, or if it could be something else.It seems to me you are saying it is a carcinoid, it has metastisized, and now it is a question of how bad the metastases is. Is that what you're saying?I understand of course, that this is not a totally definitive diagnosis; just making sure I have the correct interpretation of what you're saying.Cheers, C G
    CerebralGirL 8 Replies
    • December 16, 2008
    • 03:19 AM
    • 0
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  • Carcinoid syndrome occurs in 10% of patients who have a carcinoid tumor.It consists of flushing and diarrhea.Next,I'm almost certain that carcinoid syndrome can occur without metastises.
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 03:33 AM
    • 0
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  • NO!!!! high serotonin can be caused by carcinoid but can also be caused by many foods or meds!!!!u need to stay away for all foods that can elevated serotonin test for 1 WEEK prior.!!-go to quest lab website, then serotonin test-it should tell u all foods & meds that need to be avoided for 1 week prior. foods to avoid include tomatoes, avocados, pineapple, bananas, walnuts, chocolate... i think tylenol, caffeine, & tobacco may also alter test. there r 2 other tests 5HIAA & ___. endo & colonoscopy can miss carcinoid. need octreotide scan. there r 2 radiological tests for carcinoid, 1 is specific for carcinoid only, other test will detect tumor but not tell u what kind i.e. carcinoid. i'm not positive but beleive octreotide scan is specific for carcinoid-confirm yourself. fyi i had hi serotonin.. & scan negative. the scan is the definitive answer. ---hope this helps, but please do not use this as substitute for MD?np visits. also, have blood work for celiacs/gluten intolerate-this can cause gi symptoms, for more info c my web site MelissaStockmanNP.com ---melissa rn, np Hi, I'm terribly concerned about a high serum serotonin result of 1724, well elevated above normal range of 0 - 1000. Is there any explanation for this result other than carcinoid cancer??????????Brief medical history - 38yo female, not on any medications, fatigue for one year, some discomfort and tightness in centre of chest, severe diarrhea for 3 months, various stomach pains for 3 years. Tested negative for coeliac disease. After colonoscopy and endoscopy, diagnosed two weeks ago with crohn's by gastrolenterologist. GP ran serotonin test and have to wait one month before I can meet again with GI for further advice and testing.Panicking as I have two young children, aged 1 and 3, and after many hours of searching the internet, can't find any alternative diagnosis and desperately do not want it to be carcinoid.Any suggestions would be most gratefully received.....Thank you!
    Anonymous 42,789 Replies
    • December 16, 2008
    • 05:59 AM
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  • This is going to sound silly,but does carcinoid syndrome occur without a carcinoid tumor? I suppose not, or it would be named something else. Sigh.Our GP discounted carcinoid because the Chromogranin A & 5 HIAA were normal, but I read that some people just can't metabolize serotonin. Any thoughts? Also, if I may ask, are you in the medical field or having a similar case or?? Just curious since almost no one knows about this stuff.Thank you for your time, C G
    CerebralGirL 8 Replies
    • December 16, 2008
    • 07:29 AM
    • 0
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  • Hi again.I posted a reply last night but don'y see it.First,carcinoid syndrome consists of flushing, diarrhea,often nausea & vomiting and sometimes wheezing.It occurs in 10% of patients with carcinoid tumors,but it doesn't mean that there are metastases.That's what I meant by some being less''serious'' than others.:)
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 00:08 PM
    • 0
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  • Dear c.g.,If that was addressed to me,yes,I'm a retired M.D.:)
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 00:12 PM
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  • Now,about your A.N.A. titer of 1:640:you have an autoimmune disease of some type,possibly ''lupus.''That would explain the anemia.Wish I had better news!:)
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 00:20 PM
    • 0
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  • I don't know why my replies aren't being posted,so I'll try again!First,10% of patients with carcinoid tumors get carcinoid syndrome,which consists of flushing,diarrhea,nausea&vomiting,and sometimes wheezing.It often indicates liver metastasis or a location outside the ''gi'' tract,such as in a bronchus(lung).:)
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 00:38 PM
    • 0
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  • I just read "A Review of Carcinoid Cancers'' by Dr. Richard Warner,and it is very good.I strongly recommend it.(It's online.):)
    richard wayne2b 1,232 Replies
    • December 16, 2008
    • 01:54 PM
    • 0
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  • Ok I think I have all that. Just to clarify, I am not the person who starte this post originally, so no ANA is available. Current plan is to redo blood and urine, and stool smears (which were negative for celiac) then see an oncologist. Then the GI doc wants to do a camera swallow. Any point to this. From my perspective it seems unhelpful.
    CerebralGirL 8 Replies
    • December 16, 2008
    • 11:41 PM
    • 0
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  • I agree that an endoscopy would be of little benefit.And,I know that you didn't do the original post.:)
    richard wayne2b 1,232 Replies
    • December 17, 2008
    • 00:22 AM
    • 0
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