My husband (48} has reocurring muscle, bone and join pain (fist time 16 years ago). TDoctors excluded rheuma and related diseases, celiacic disease and now they suspect, based o high levels of 5 HIAA 24 hour urine test - carcinoid sydrom. However, apart from the pain he has not had any significant other symptoms as listed for the carcinoid syndrom (syndrome). His vitamin D levels are also low...he looks like perfectly healthy person otherwise....any lead what else this could be?
Hello...I just came across your post when researching my own problems and I wanted to ask you a few things. I too, have been going through some of the same symptoms as your husband but I also have had flushing and alot of gastrointestinal pain primarily URQ (liver area) and LRQ pain and burning. I was tested for carcinoid and my 5HIAA test came back within normal limits but my blood serotonin was elevated. I have had many scans including an Octreotide (which is specific for carcinoid) all were normal except for a liver hemangioma. I have had terrible joint pain (mostly low back and knees and spine) along with the other symptoms for a year now. I have not had the classic symptom of diarrhea which seems to accompany carcinoid syndrome but I understand you don't have to have diarrhea.
There are several other blood tests that your husband should have...one of them being ChromograninA. If you go to the carcinoid website carcinoid.org you will find a complete list of diagnostic tests for carcinoid compiled by the one of the country's leading experts.
Did your husband have any scans such as CT or MRI both with contrast? Where do they think your husband's carcinoid is? Does he flush?
I am still going through tests and I am not fully convinced I don't have it. Unlike your husband (aside from his joint and muscle pain) I feel very unwell. May I ask what was your husband's 5HIAA result and what was the reference range? Did he follow the strict diet on what to avoid for 5 days prior to the collection of urine? That could make a big difference. Even certain pain killers, smoking, and a list of foods must be avoided,
I would be interested in hearing from you. I know you must be scared....I am too. Perhaps you can get back to me and we can compare notes?!
Take Care....hope to hear from you.
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