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

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?

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.

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?

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.