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.

kaforester3 | @kaforester3 | Jun 16, 2024

In reply to @hopeful33250 "Hi @kaforester3, It sounds like you have had a lot of digestive tract problems. Problems with..." + (show)

No I have never had a 68Ga DOTATATE Positron Emission Tomography (PET). I just got the urine test but the results are not back yet.

siluka | @siluka | Jun 17, 2024

In reply to @kaforester3 "I just got the test done again on June 7th. The test result is 302. However,..." + (show)

if you are concerned seek another opinion.

kaforester3 | @kaforester3 | Jun 18, 2024

In reply to @siluka "if you are concerned seek another opinion." + (show)

I’m not sure how to do that. I can’t go to another doctor in KS. The other GI doctors stick together and won’t see me. I can however go back up to Mayo in MN I guess. He was a great doctor and I’m sure can figure it out for me.

siluka | @siluka | Jun 18, 2024

In reply to @kaforester3 "I’m not sure how to do that. I can’t go to another doctor in KS. The..." + (show)

I am in Australia and waiting to see what the next step for me (lesion liver) but from what i know here if you see a new dr you can request your medical records be sent to your new dr. All you need to do is sign a request to release medical information form

sunshyn75 | @sunshyn75 | Apr 7 8:47am

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.

jessie59 | @jessie59 | Apr 8 10:07am

In reply to @sunshyn75 "Hello all, I have been on PPI's since the mid 80's when I had a perforated..." + (show)

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?

Teresa, Volunteer Mentor | @hopeful33250 | Apr 8 1:52pm

In reply to @sunshyn75 "Hello all, I have been on PPI's since the mid 80's when I had a perforated..." + (show)

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.

sunshyn75 | @sunshyn75 | Apr 9 12:30pm

In reply to @jessie59 "Hi Sunshyn, may I knows 3 times PET scans within a period of how long? Any..." + (show)

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.