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

My wife has (and has had for more than a year) Chromogranin A levels of 2000 and above, as well as orthostatic hypotension. She is under treatment by a primary care doctor and a variety of specialists (endocrinologist, vascular surgeon, neurologist, nephrologist) at a local and well-regarded medical center. She is a survivor of ECMO. My interest in posting on this blog is to question what types of tests people with similar Chromogranin A levels have had, or should have.

Medical Testing to locate primary NET tumor then contact oncologist for evaluation and treatment. Take one day at a time and remain positive.

Hello @debona2113

You say that the tests show 6, 5mm nodules. Do the test results explain what type of nodules these represent? For example, are they cysts, or something else?

If the reports do not indicate the type of nodules, this might be a good question to ask the GI doctor at your next appointment. You might also consider asking how these nodules might be affecting your symptoms of weight loss and diarrhea.

I hope that your appointment provides some answers for you. Please know that is always your right to seek a second opinion if you do not feel that your questions and concerns are being addressed.

I look forward to hearing from you. Will you post again after your appointment?

I'm only 56

I have had all stool tests, ct liver belly, pancreas and ldct lung which showed 6 5mm nodules but yet nothing found. Someone please help, I need to know what to ask for next at my appt tomorrow with GI

Hello @debona2113 and welcome to Mayo Clinic Connect. As you can see, I've moved your post to a current Connect discussion on elevated CgA levels so that you can connect with others who have had the same experience.

I can certainly understand your concern with the weight loss, diarrhea and the elevated CgA level. What is your doctor looking for at this point? Have you had other lab tests or scans to look for an answer?

I have been ill. Wgt loss. Diarrhea, back pain. Nausea, cramping and my doc did Chromogranin A which came back severely elevated at 2,529. What can I expect next?

They fluctuate from 135-150

Could I please ask how high your Chromogranin A levels actually where?

I had high Chromograni A before whipple surgery to remove a Nuroendocrine gastrinoma tumour in the pancreas head. It went down to 400+ but subsequently went up again after 4 months or so. A PET scan revealed no tumor. Will be having CA blood test in March. Not sure what caused the high CA of 600+.