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

Posted by kaforester3 @kaforester3, Apr 24, 2020

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone ever had levels that high and what did the doctor say was wrong with you? I’m kind of freaking out bc they are jumping right in and sending me to get a octreotide scan in the next week. Someone please help me because the GI doctor isn’t saying anything.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

eljay1 | @eljay1 | Jun 21 12:25am

In reply to @lindabees "I hope you get an answer to your struggles" + (show)

Thank you.

eljay1 | @eljay1 | Jun 21 12:25am

In reply to @lindabees "Have you been diagnosed with a neuroendocrine tumor? As to your high chromogranon, do you take..." + (show)

Yes. I’ve taken Nexium for at least a decade, probably longer.

lindabees | @lindabees | Jun 19 11:09pm

In reply to @eljay1 "I have not been diagnosed, but after I had several high results in a row, the..." + (show)

I hope you get an answer to your struggles

eljay1 | @eljay1 | Jun 19 10:27pm

In reply to @lindabees "Have you been diagnosed with a neuroendocrine tumor? As to your high chromogranon, do you take..." + (show)

I have not been diagnosed, but after I had several high results in a row, the Gastroenterologist sent me to an oncologist.

eljay1 | @eljay1 | Jun 19 10:26pm

In reply to @hopeful33250 "Hello @eljay1 and welcome to Mayo Connect. I can understand your concern. Whenever a blood test..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | Jun 18 8:34pm

In reply to @eljay1 "My CgA is 2400. I have had several CT scans both with and without contrast, and..." + (show)

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?

lindabees | @lindabees | Jun 18 6:59pm

In reply to @eljay1 "My CgA is 2400. I have had several CT scans both with and without contrast, and..." + (show)

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.

kevinmonroemi | @kevinmonroemi | Jun 18 5:45pm

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.

eljay1 | @eljay1 | Jun 18 5:14pm

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.