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

eye mask and counting. Also had someone touch my foot through out scan

Hello @siluka and welcome to Mayo Connect.

Your concern about the CgA levels and the lesions on the liver are all understandable. How are you feeling since your surgery? Are you able to eat without digestive issues?

I'm glad that you will have a follow up CT and MRI this week. Do these tests represent the first follow up since your surgery?

i actually feel good since surgery. I have had check up every 6 months since surgery. they found 1 lesion hypervascular on ct then sent for pet ct scan and no up take (may 2023) mri in october 2023 and it showed 3 lesions on liver undetermined. Had ct scan yesterday and mri on Monday. then see my surgeon in June. Digestive after surgery has been great. I can now eat food i couldn't eat before used to get GERD badly. I did have 1.5m of my ileum removed

That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of digestive issues is great. Posts, like yours, encourage others who are facing surgery.

I'm wondering if there was a specific eating plan that helped you after the surgery of the ileum? Any do's or don'ts that you might want to pass on to others who are anticipating this type of surgical treatment?

always keep an eye on your iron and b12 levels with blood tests. I do get b12 injections every 3 months and take multivitamins. Also I have here in Australia Sustagen a nutrition supplement which comes in powder for (like milo). I eat most foods now but still cannot tolerate some acid producing foods like tomato. Dietitians put me on a high protein diet. Still i cannot gain much weight but trying. hope this helps.

Hey! What did you MRI and CT show up?

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.

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

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!

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.