Going through carcinoid/NET tests

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Going through carcinoid/NET tests

by ankiwo on Sat Oct 06, 2018 10:56 PM

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Hi all, It may be a bit premature for me to be posting here, but I am here because I don’t know where else to be. I was going for testing for mast cell disorders but wound up getting a negative result on that but a high Chromogranin-A result of 502. My GP has me going through a battery of carcinoid/NET tests blood/urine, the whole drill. I am in pain a lot and now can’t even take Tylenol for a few days before I get these 24-hr urine tests done. I have been reading that PPI use could cause elevated CgA levels but I stopped taking PPIs 6 weeks prior to taking the blood test that came up with the high CgA reading. Recurring H.Pylori " target="_blank" rel="nofollow">H.Pylori infections would cause my entire body to have so much pain I could barely walk. At least I thought it was the H.Pylori " target="_blank" rel="nofollow">H.Pylori causing it, but now there appears there may be a worse villain hiding in the shadows. Is there anything else that could cause CgA numbers this high? I know it is too early to freak out but I can only convince myself for so long before I break down in tears. I have 2 young children—one with special needs—and I can barely take care of them as it is. Help??

RE: Going through carcinoid/NET tests

by Peg541 on Tue Nov 06, 2018 03:50 PM

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I'm very new here but I'm sorry you have had no responses. Did you have a nuclear scan? My endocrinologist told me it takes three years to diagnose Carcinoid. I'm not wiling to wait that long with the way I feel. I'd like to know more about your testing. I'm in the same position you are.
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