1. < Neuroendocrine Tumors (NETs)

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.

ttdonnelly | @ttdonnelly | Jan 30, 2023
In reply to @queenie2030 "My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have..." + (show)
@queenie2030

My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have never been able to image any tumors after many many scans. He has symptoms of carcinoid syndrome as well. It is very confusing and not well understood. This is just one possibility.diagnosis came from Mayo Clinic visit.

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Thank u so much for your reply. I am exactly the same. Could I please ask is your hhusband on any medication for Carcinoid syndrome.

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2 replies
queenie2030 | @queenie2030 | Jan 30, 2023
In reply to @colleenyoung "Welcome @ttdonnelly. I moved your message to this existing discussion: - High or Fluctuating Chromogranin A..." + (show)
@colleenyoung

Welcome @ttdonnelly.
I moved your message to this existing discussion:
- High or Fluctuating Chromogranin A Level: What does it mean?: https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

I did this so you can read previous posts and connect easily with members like @queenie2030 @hopeful2 @kaforester3 @tomewilson and others.

Chromogranin A (CgA) is a protein released by neuroendocrine cells. A test for chromogranin A measures the amount of CgA in the blood. The test is most commonly used in the diagnosis or monitoring of neuroendocrine tumors.

May I ask why the Chromogranin A test was ordered for you?

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The test was ordered for my husband because of his symptoms of carcinoid syndrome. He just tested once yearly.

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queenie2030 | @queenie2030 | Jan 30, 2023
In reply to @ttdonnelly "Thank u so much for your reply. I am exactly the same. Could I please ask..." + (show)
@ttdonnelly

Thank u so much for your reply. I am exactly the same. Could I please ask is your hhusband on any medication for Carcinoid syndrome.

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The only thing he takes is Claritin for the itching. He tried an infusion of something that was supposed to help but he had a bad reaction to it and could not take it.

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1 reply
queenie2030 | @queenie2030 | Jan 30, 2023
In reply to @queenie2030 "The only thing he takes is Claritin for the itching. He tried an infusion of something..." + (show)
@queenie2030

The only thing he takes is Claritin for the itching. He tried an infusion of something that was supposed to help but he had a bad reaction to it and could not take it.

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I just remembered the med was sandostatin.

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queenie2030 | @queenie2030 | Jan 30, 2023
In reply to @ttdonnelly "Thank u so much for your reply. I am exactly the same. Could I please ask..." + (show)
@ttdonnelly

Thank u so much for your reply. I am exactly the same. Could I please ask is your hhusband on any medication for Carcinoid syndrome.

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He tried sandostatin but had a very bad reaction to it and could not take it.

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osiejay26 | @osiejay26 | Jan 31, 2023

I was diagnosed with NETs last year. My case is a bit unusual since it seems to be only on the liver. They are still unable to find the origin. They started me on Lanreotide a somatostatin. It worked for a few months but then my CgA were elevated again for three months in a row. My flushing has gotten worse and the pressure I feel in my head from the flushing seems to linger for several minutes. I do scans every three months. My previous scans before my CgA levels were high turned out stable. I'm curious to see if there are any changes in the next scan.

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jessie59 | @jessie59 | Jan 31, 2023

I had high Chromograni A before whipple surgery to remove a Nuroendocrine gastrinoma tumour in the pancreas head. It went down to 400+ but subsequently went up again after 4 months or so. A PET scan revealed no tumor. Will be having CA blood test in March. Not sure what caused the high CA of 600+.

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ttdonnelly | @ttdonnelly | Feb 1, 2023
In reply to @osiejay26 "I was diagnosed with NETs last year. My case is a bit unusual since it seems..." + (show)
@osiejay26

I was diagnosed with NETs last year. My case is a bit unusual since it seems to be only on the liver. They are still unable to find the origin. They started me on Lanreotide a somatostatin. It worked for a few months but then my CgA were elevated again for three months in a row. My flushing has gotten worse and the pressure I feel in my head from the flushing seems to linger for several minutes. I do scans every three months. My previous scans before my CgA levels were high turned out stable. I'm curious to see if there are any changes in the next scan.

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Could I please ask how high your Chromogranin A levels actually where?

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1 reply
osiejay26 | @osiejay26 | Feb 1, 2023
In reply to @ttdonnelly "Could I please ask how high your Chromogranin A levels actually where?" + (show)
@ttdonnelly

Could I please ask how high your Chromogranin A levels actually where?

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They fluctuate from 135-150

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debona2113 | @debona2113 | Mar 9, 2023

I have been ill. Wgt loss. Diarrhea, back pain. Nausea, cramping and my doc did Chromogranin A which came back severely elevated at 2,529. What can I expect next?

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