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

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 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

I'm only 56

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?

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

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.

Hi @dick2016, does your wife have a neuroendocrine tumor? You mention that she is a survivor of ECMO (extracorporeal membrane oxygenation). Was this used for heart surgery?

Colleen - thanks for responding. My wife has not been identified as having a neuroendocrine tumor. However, since my previous post, her CgA level has risen to 4000.
In 2017, she was admitted to the UMD ER. She was immediately admitted to the cardiac ICU and was diagnosed with bilateral pulmonary embolisms and placed on ECMO. The fact that ECMO was available saved her life. The source of the clots was never firmly identified, but was thought to be from the legs. She subsequently had a stent placed in her left thigh.
She went on living a fairly normal life until perhaps 2020 when the orthostatic hypotension began to be the dominant problem. Her quality of life remained only fair until May 2022, when - following an admittance to the ER due to very low blood pressure, two pharmacists reviewed her 12 prescriptions, deleted three of them and changed dosage on a fourth. Within three weeks, she was a new woman.
Later that summer following a fall in which she broke her arm, the hypostatic blood pressure issue resurfaced, and her health has gone downhill since. She recently saw the vascular surgeon who placed the stent in 2017, an endocrinologist and a neurologist. She will shortly see her primary care physician.
We plan to have the gerontology unit at another local hospital system have a look at her, since her quality of life is not good, and we want another"set of eyes" on her problem.
That's way more information than you asked for, but I wanted to paint a larger picture.

Chromogranin A blood test
I need some information on how serious high levels are. Mine are 1530 and today I'm doing a 5-H1AA test. I've also had severe diarrhea for a couple of months. Should I be concerned?

Hi @charlene630, welcome. I see that you recently had a blood test to check the chromogranin A (CgA) levels in your blood.

I moved your question to this existing discussion:
- High or Fluctuating Chromogranin A Level: What does it mean?: https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/

You can click the link to read previous posts where you'll also read information about CgA testing and can connect with members like @hopeful33250 @dbamos1945 @phyllisden @tomewilson and others.

CgA levels can be elevated in people with a range of health conditions, including inflammatory bowel conditions. However, CgA testing is typically reserved for the diagnosis and management of patients with neuroendocrine tumors.

Charlene, Is testing being done to confirm or rule out a neuroendocrine tumor for you? When will you be doing the 5-H1AA test?