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

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.

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

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.

if you are concerned seek another opinion.

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.

I just got the test done again on June 7th. The test result is 302. However, the test was done through Quest Diagnostic and it says it is in range now. I’m not sure how I feel about the result though because I’m fighting fatigue all the time and I always have pain on my lower right abdomen. I do not have an appendix anymore, so it’s not that. I feel like I cannot get someone to listen to me that something is wrong.
I just did a colonoscopy and an EGD all the biopsies were normal but the Calprotectin level from a stool sample was 82. Should I give the Mayo Clinic a call again or just trust the doctors in KS that seemed to not be looking at all the results.

I can surely understand your concern. My CGA was over 1000 and scared me to death. I read too much on the internet and was convinced that cancer and tumors would be my dx. Not so, clean blood results 2nd time around plus urine testing. Now only low grade anemia was of concern. I have had Lyme disease for over 35 yrs and have taken every imaginable medication plus digestive aids in that period. It can be the tums, omeprazole and other anti acid products that can raise the levels. In my case nothing to do but realize I have an infectious disease and do what I can to keep healthy with all the meds I take. Other simple factors can have a bearing like ongoing stress and other personal issues that can raise this odd blood level. Keep positive and go along with the tests to rule out the worst. And realize the best out of this can occur!

Could you update when you check again your chromogranin levels, please?

I do not see my specialist until mid June, but I did see my gp. I have a total of 6 liver lesions all different characteristics one however has grown slightly and the report said likely represents metastasis.

Hey! What did you MRI and CT show up?