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

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

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.?

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,

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!

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

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

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?

@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.

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?

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?