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High or Fluctuating Chromogranin A Level: What does it mean?
Neuroendocrine Tumors (NETs) | Last Active: Apr 9 5:12pm | Replies (189)Comment receiving replies
Hello all, I have been on PPI's since the mid 80's when I had a perforated pyloric ulcer and my gastrin and Chromagranin A are always high. I also have Stage 4 kidney disease, so my levels have a number of potential reasons. Just had my third PET scan to check for neuroendocrine tumors and it came back negative again, thankfully, but the radiologist suggested doing an endoscopy to verify. That is scheduled this Wednesday, BTW, my last Chromagranin A level was 9,000. You read that right, 9,000. That was the major reason my Oncologist requested the PET. He's never seen one that high without some kind of tumor. Still praying I'll be the "tumorless" one he can talk about to others.
Replies to "Hello all, I have been on PPI's since the mid 80's when I had a perforated..."
Hello @sunshyn75 and welcome to Mayo Connect. I certainly appreciate the diligence of your medical team. They are really tracking the possible causes of the high CgA numbers. It looks like you will be having an endoscopy tomorrow. Is that correct?
There are, of course, many reasons for an elevated CgA such as kidney disease and even the use of PPI meds. Have other tests been done to look for NETs? I'm thinking of a 24-hour urine test as well as a serotonin level blood test. Here is a listing of the different tests that can be used to determine the presence of NETs. This is from the Carcinoid Cancer Foundation website,
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
Will you post after you get the results of the endoscopy? Wishing you all the best as you search for a reason for these elevated lab numbers.
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Hi Sunshyn, may I knows 3 times PET scans within a period of how long? Any other scans eg MRI, CT or ultrasound done?
Both my Gastrin & Chromograni A were high since July 24 but oncologist mentioned he is more concern on my high Gastrin level of 750 which was pre Whipple surgery ops of Gastrinoma PNET. I am on PPI since then.
Like you, with 1 CT scan (white spots in liver), 2 times MRIs, ultrasound scan, 2 times endoscopies and 1 time GA68 PET scan & results were inconclusive. I m now on 3 monthly surveillance MRI & blood tests. Do you have any symptoms?