Hello @kaforester3,
I can understand your concerns, especially when your doctor does not give you much information. While your levels are high there are many reasons, other than neuroendocrine tumors. In order to have a full picture, your doctor should also order a 24-hour urine test (5HIAA) as well as a serotonin blood test. It would be a good idea to inquire if your doctor would do these lab tests as well.
From what my GI doctor has told me that the Chromogranin A Level can be high if you take proton pump inhibitors (meds like Prilosec, etc.). Also, liver, kidney, or heart problems can also raise the CgA levels.
I have had surgery for 3 NETs in the digestive tract and my CgA levels have been in the 400's but the other tests have been normal and the EGD has also been normal.
I would encourage you to communicate with your doctor by the patient portal or by phone and inquire about these other lab tests and ask about other reasons for the elevated levels.
Have you had any specific symptoms that led to your doctor checking the Chromogranin A-Levels? I'm thinking of symptoms like diarrhea, weight loss, etc.
I have been diagnosed with Crohn’s iliteus, and IBS. However, the problem is the stool samples came back normal and no active Crohn’s or IBS. I still have diarrhea, and my stomach is hurting so bad; it rotates to my back, so it hurts to walk sometimes.
I have lost any weight but that’s also due to the fact that there is something wrong with my esophagus. So I have been drinking the Ensures with calories, so that I don’t lose weight bc of having trouble swallowing food.