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

@charlene630, different labs have different ranges. Do you know what your lab's are? (Mine is 0-109 and my numbers have never been within that range. My last test the end of January was 136). There are many factors that can affect those numbers, i.e. certain foods, meds, etc. So it's good that your doctor is doing a 5 HIAA test for another look.
I would encourage you to be an advocate for yourself. When I had the 5 HIAA test several years ago, my numbers were elevated but not significantly. None of my doctors seemed to be concerned and I didn't push it so more time went on with me going to the ER on a fairly regular basis, and having more CTs (which showed nothing) but never a CgA or 5HIAA test. Then 5 years ago I had emergency surgery for an intestinal blockage, which was a carcinoid tumor. The surgeon said there were "thousands" of them. Thus began my journey with these neuroendocrine tumors. Oh, and I'd had all the symptoms of carcinoid syndrome for years. But no one was connecting the dots - including me.
So good for you for reaching out to this group. You will get a lot of good information and helpful advice. And do your own research so you can have an educated discussion with your doctor. While these tumors are still considered somewhat rare, they are increasing so there's more information out there.
Please reach out whenever you need to.

Hello @charlene630,

I would like to join Colleen (@colleenyoung) in welcoming you to Mayo Connect. It is good that you posted your concerns. I always feel that worries are lessened when you share them with others.

I hope you take the opportunity to read the other posts in this discussion. As Colleen said, elevated CgA levels can indicate NETs, but CgA levels can also be elevated due to certain medications (like PPIs) and/or other health conditions.

It is good that your physician is following up with the 5-H1AA test. Have you had any other tests and/or scans to check on the reason for the severe diarrhea, such as a colonoscopy and/or PET scan? Are you having any other symptoms?

Hi, i hope someone can make my mind ease
My mom since her period ended she always sweats but since she started taking her meds for an autoimmune disease called scleroderma she’s been sweating more than usual
Doctor told us to do the chromogranin test and it was 600 while the range is 100
For your knowledge also she takes proton pump inhibitors as she’s been having gastroesophageal reflux
He also told us to do the 5 HIAA test and we’re waiting now for the result
Could someone ease my mind and tell me whats wrong with her
Im really concerned

I forgot to mention that she sweats whenever she does anything like walking or anything like this stuff

Hello,

I am a 28 year old dialysis patient. I recently had blood work from my Endocrinologist and my CgA level is 1805. I did not have enough time to go over everything with him during my appointment (it was a lot to discuss and go over). From what I've read online - a number of factors can cause this to be high. I do have a tumor on my left adrenal gland that was found back in 17 but nobody wanted to operate on me due to insanely high BP levels (300/180) even on meds. Has anyone had or heard of such high levels for just a dialysis patient? Could this test be a secondary identifier to the tumor that was already found on imaging? Any insight is appreciated and I hope everyone is well!

My Chromogranin A was 1507 last year and the PET was negative. In February I was hospitalized with a liver abscess with a spot on the pancreas and lung. Was on Zosyn for 6 weeks and two weeks of amoxicillin and Cipro when that was done. No stomach meds for months and my Chromogranin A is now 1414. Going back to the cancer doc for another possible PET. Scary having such a high number on this test without n owing why.

Hello @peg152 and welcome to Mayo Connect. Your concern is certainly understandable. The strange thing about Chromogranin levels is that they can be high, but not necessarily be indicative of cancer. Other factors can raise these levels as well.

I certainly agree with your decision to check with a doctor, though. This is a good place to start. Have you had a diagnosis of cancer previously? I'm also wondering, given all of the problems you mentioned, if you have had any biopsies?

How are you feeling? Do you have problems eating or problems with digestion, such as diarrhea, constipation, vomiting, etc.?

Chromogranin is a fairly reliable biomarker used to monitor patients with neuroendocrine cancers. Mine was up over 1800 last year then after a small liver resection dropped down to around 1000. I get tested every 4 weeks as am diagnosed with advanced metastatic paraganglioma. The endocrinologist says it is a good test which helps to determine tumor activity. As mentioned above there are other factors that can cause elevated levels to a certain point and each lab uses different methods for the test and they aren't interchangeable. Along with the pet scans chromogranin is another way the dr.s keep track of disease progression which in my case has been relatively eventful.
Good Luck

A chromogranin level of 1800 is quite high and taking account your blood pressure and a tumor near the adrenal gland for me would be quite alarming. I had high blood pressure and a large 10 cm tumor near the adrenal gland and was referred to a city of hope surgical oncologist. I needed preoperative alpha and beta blockers to control blood pressure as they said I could have a stroke during surgery. The surgery was successful, unfortunately the left kidney and adrenal gland had to be removed. Post-op diagnosis was extra adrenal Pheochromocytoma or Paraganglioma. The two terms are interchangeable more or less. I would ask your doctor to have additional testing such as 24 hour urine and plasma catecholamines as well as 24 hour urine and plasma metanephrine.

I’m tired. No cancer diagnosis. Lots of cancer in my family… mom, aunt, grandma and my sister died a year ago from breast, throat & lung cancers… she smoke and drank, as did my Mom. I have diarrhea most of the time, but had a section of colon removed a few years ago due to diverticulitis. Stomach issues with too much acid but haven’t taken any stomach meds since Feb because of protein pump thing, Last Chromogranin . was 1414 even off stomach meds. Thank you for your reply.