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

Yes, I had to redo it because I’m on protonix and Pepcid. The GI doctor is thinking the test was so high because of the medicine. So they took me off of them for two weeks and redid the test. It came back normal.
Thank you for checking up on me though.

That is good news, @kaforester3, yes, PPI meds like the ones you mentioned can cause high levels of Chromogranin A that shows up in blood tests.

How you are feeling these days? Are you still having the troublesome symptoms of diarrhea, etc.?

Help! I had a lobectomy for a spindle-cell sarcoma in 2016.
Because I was having flushing last year, my PCP ordered chromogranin-A and HIAA tests. The CA was in the mid 200s but the HIAA was normal. He next ordered a Gallium scan. No tumors, yay!
Repeated CA tests by my oncologist are showing climbing CA levels. It’s now at 508 and I’m waiting for another HIAA result.
My oncologist has set up a PET scan in a couple of weeks.
I have IBS for which I take 400 mg of cimeditine and two donnatal daily. I took PPIs ages ago but switched to OTC meds because the PPIs made me sick at my stomach (I also switched gastroenterologists; she told me to increase the dosage for relief. Stupid).
Anyway, to make a short story long, has anyone had this situation with climbing CA numbers and no discernible reason? I am frustrated and frightened.

I feel your frustration, believe me!

@dbmenger,

What great news that the Gallium scan showed no new tumors! I have had three surgeries for carcinoid cancer and from what I've been told there are many reasons for elevated Chromogranin levels. From my understanding, you should weigh these numbers against other tests to realize their significance. Here is another Connect discussion about Chromogranin levels that you might find interesting, https://connect.mayoclinic.org/discussion/cga-chromogranin-results-from-different-labs/

I'm not familiar with the meds you are taking for IBS, however, I get the impression that you are not taking anything that is considered a PPI which is good because PPI meds do tend to raise these levels. It's best not to get overly frustrated or frightened unless other tests or scans show more problems.

I hope that your upcoming PET scan turns out well. Will you post again with an update?

Yes, I will, thank you. My PCP wanted to do another Gallium scan but I convinced him we should wait until after the PET scan.
It seems my HIAA test results have gone MIA. They were normal last time so I hope they will be located. Sigh.

That sounds like a good idea, @dbmenger. I hope your PET scan gives you some good results.

Do you have an appointment yet for the PET scan?

It’s July 2 but I don’t meet with the doctor for the results until July 6. I read all the posts on scanxiety to get some hints on staying calm while I wait.

@dbmenger I'm glad to hear that the scanxiety posts were helpful to you. The waiting time is by far the worst thing in the medical process. I hope that you have good results to ease your mind.

If you are comfortable doing so, will you post again after you learn the results?

Hi, there. Be calm. My Chromogranin A levels were 504 on my last blood test. HIAA 5 test and Gallium Donotate scan were normal in June. I had all three tests six months ago and the results were the same, although my level was 254 then.
My endocrinologist suggested I remove myself from cimeditine, which I’d been taking 800 mg a day for years and PPIs before that (Ugh - avoid). In a month I will have another chrongranin test that she thinks will be normal. In her research she found that the -ditines can raise your level to abnormal scary limits. I believe her.
I had a lobectomy for a spindle-cell carcinoma almost five years ago so I understand how this chromogranin thing can reduce you to rubble.
Oddly, I feel fine without the cimeditine anyway.