Is there a link between Autoimmune & Neuroendocrine conditions?

Posted by amyn1616 @amyn1616, Mar 23, 2023

Hi.
Age 51.
Diagnosed with Scleroderma, Lupus and Raynaud’s 20 yrs ago.
Had a Bronchial Carcinoid removed in ‘07.
A routine Gallo scan in ‘19 said I have Neuroendocrine tumors on Pancreas head.
I went to cancer specialist in Houston and they said my CgA ( 600 at time ) was probably bc I take PPI’s daily.
I had a biopsy on pancreas and they found benign granulomas, which have grown little over the past 4 years.

Now my CgA is 2200. Serotonin is still 10.

My question is if there are others who have autoimmune disorders + high CgA?
Am I mistaking my Lupus flare ups with possible PNET symptoms?

The high CgA test is what is alarming and scares me right now.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023

@amyn1616, I've added your question to the Autoimmune Diseases support group as well as the NETs support group.

I found this excerpt from the National Cancer Institute:
"Although an elevated level of a circulating tumor marker may suggest the presence of cancer and can sometimes help to diagnose cancer, this alone is not enough to diagnose cancer. For example, noncancerous conditions can sometimes cause the levels of certain tumor markers to increase." Read more https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis/tumor-markers-fact-sheet

Obviously you are concerned that the sudden increase in Chromogranin A (CgA) levels. According to Mayo Clinic Laboraties cautions about the CgA test "The use of PPI also compounds the effects of other conditions, listed below, that can result in false elevations of CGA." (https://www.mayocliniclabs.com/test-catalog/Overview/34641#Clinical-and-Interpretive)

While your most recent CgA test may be a false positive, it sounds like it would be worth further investigation. Are you scheduled for additional testing?