High or Fluctuating Chromogranin A Level: What does it mean?

My nutritionist ordered the tests. She and my Allergist think that I probably have MCAS.

Hello @eljay1 and welcome to Mayo Connect. I can understand your concern. Whenever a blood test or scan is outside of the normal limits, it can be worrisome. It sounds as if your medical team is following up on this.

There are many reasons for high CgA values, other than cancer. As @lindabees mentioned, taking PPI meds can raise the CgA numbers. There are also other health conditions that can contribute to higher than normal CgA levels.

I'm wondering what symptoms you might be having now? Was there any health issue, in particular, that led to the testing of the CgA?

Have you been diagnosed with a neuroendocrine tumor?
As to your high chromogranon, do you take PPI's such as pepcid or prilosec? Those are known to increase chromogranin.

What is your gastrin now? I too have gastrinomas I had a perforated esophagus I have a pancreatic primary with many tumors in both sides of the liver. I take a lot of ppi cga is a marker when it went down Gastrin went down my gastrin was 2,000 now down to 180 lowest since my diagnosis about 2 1/2 years after high dose radiation to the liver. My Dr was also more concerned about gastrin.

My CgA is 2400. I have had several CT scans both with and without contrast, and they show nothing. I had an endoscopy a year ago and it showed nothing.My urine tests are negative. Colonoscopy four years ago resulted in the removal of a couple of polyps. I am constantly nervous about the results of this CgA test. I have seen an oncologist, endocrinologist, and a gastroenterologist. They keep repeating tests and CT scans.

Hello @sunshyn75,

I appreciate the follow up regarding your tests and procedures. I know you are looking forward to hearing about the results of the biopsies.

I look forward to hearing from you again. Will you continue to post after you receive more information from your doctor?

Hey Jessie, the 3 PET's were over the span of at least 5 years. When they do the PET they also do some sort of CT within the PET from what my Oncologist said. No ultrasounds. I have no symptoms of anything other than the excessive acid reflus and IBS my GI doc diagnosed. Had my PET this morning and discovered the PET DOTATATE probably was lighting up on some polyps in my stomach, which they removed this morning. They also did some biopsies of tissue which will take a few days to get results on. BTW, for what it's worth, I was wrong my my Chromagranin A levels. They were actually quite a bit higher at 22,899. My GI doc and I discussed a bit and he's at a loss as to why except for the PPI's and Kidney Disease. More when I get the actual results of the procedure.

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.

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?

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.