Elevated Chromogranin A??

[kluesyk]

Well Thryoid fine needle biopsy on increasing size nodule says benign, but my Chromogranin A test is elevated at 268 range<225. It took 10 days and a call to the hospital where I had it done to get the endo to respond.....

He just suggests I get it retested in a few months with my local doctors, he doesn't want to follow up with me. (He was a real winner of a dr!)

I know that is a marker for carcinoid or pheos, but my urine tests for pheos have been ok. Two years ago my 5 HIAA urine test was slightly elevated and I did the whole octreotide scan which did not find any tumors. Five months ago the 5HIAA test was ok.

Is the Chromogranin A test ever an indicator for mast cell problems? I have had chronic swellings for 20 years, but I have a REALLY bad reaction to epinepherine in any form. Severe chest pain and tachycardia....so that kinda leans more toward the carcinoid....

I have a lot of flushing, tachycardia, terrible muscle pain and weakness, chest pain, shortness of breath and when upright bad left side pain near my left kidney/adrenal area as well as the POTS symtoms.

My neurologist is trying to get me an appointment at Mayo in Rochester. She sent my info 2 weeks ago, but I haven't heard a thing. Does it take a long time to hear back from them?

Anyone know anything about this test and what it means???? Thanks for helping!

[Godsgal]

Hello,

Your symptoms that you list....flushing, tachy, muscle weakness, etc. are symptoms of mast cell activation. I will tell you my friend who has POTS/dysautonomia that I met through the meet others program on here has MCAD and she had an elevated 51HAA urine test and they scanned her for tumors and she was sent to NIH too to rule out Pheo/Carcinoid and she didn't have any of that. Turned out it was all the mast cells doing that. POTS has been linked to mast cell disorders plus you have flushing. I would take very seriously that you may have a mast cell disease and the best way to find out is to get to a specialist regarding this. Where are you located? Maybe there is a good mast cell specialist you could check in with near you. I will tell you I had a pretty good experience with Mayo BUT they don't know mast cell stuff. In fact, they told me I did not have it and I DID and the head guy on this issue at Rochester that deals with mast cell stuff said I didn't have it. What a joke!! Either way, it is a VERY RARE thing for doctors to deal with so it needs to be handled by a specialist. I will let one of the more educated people on here comment on the chromogranin A test. But I would not leave those symptoms and lab abnormalities go unseen by a mast cell doc. It has changed my life getting a diagnosis and beginning to treat it with meds. And my tryptase is normal and so is my friend's so do not let any doctor rule mast cell disease out for you based on that. Lots of people have a normal tryptase level and have mast cell disease. Have you had that test done? Also the 24 hour urine methylhistamine test would be great to have too. Keep searching for the answers and God be with you!

[kluesyk]

Thanks Godsgal for your reply!

I have had the 24hr methylhistamine done and it was ok. Never had the trptase done. I have had at one time a high histamine in my urine.

I know that I read that epinepherine helps those with mast cell disorders, but it really makes me sick with severe chest pain, tachy and shortness of breath, so I wonder if it is a carcinoid or pheo that they didn't see on the scans.

I am so tired of doctors and tests.

[janiedelite]

My mom has had carcinoid syndrome for decades. I like the book Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management. A new edition was just published. I have the older edition (published in 2006). Here are the blood markers that can be drawn and analyzed for carcinoid syndrome:

- CgA

- Pancreatic Polypeptide

- Gastrin

- Pancreastatin (can only be done by the lab ISI, must be frozen and sent in their special tube)

- Gastric pH

- Substance P

- Neurokinin A

Remember that the location of your tumor will determine what your symptoms are and which markers are elevated. Lung tumor patients have wheezes, anaphylaxis, flushing, etc and high histamine levels. Stomach tumor patients have high gastrin levels, reflux (severe), flushing, etc. Small bowel tumor patients have high serotonin levels, flushing, diarrhea, etc.

Also, my mom's GI-onco doc (Dr. Eugene Woltering who is WONDERFUL) said that sometimes patients who have neuroendocrine tumors even have high-normal levels of some of the markers. The important thing is to watch these levels OVER TIME and note the trend. It's good to check these levels every 3 months. If over a year, you have a generally slow incline then you should have further testing. If your imaging studies are negative, you can try some subQ octreotide and see if you get symptom relief.

Sorry, but I don't know what other illnesses would show elevated CgA. Best wishes!

[kluesyk]

thanks for all the information! I will look into getting the book you mentioned.

My neurologist is trying to get me into Mayo at Rochester. Are there any doctors there that know about carcinoid?

Dr Woltering sounds really good.

The recommendation of my endo was to just wait for 2 months and retest the Chromagranin A test if high then do more evaulation, but I have been sick so long....I wish they would go ahead and try to find out if this is one of the causes of the flushing, muscle pain and weakness, shortness of breath and left side kidney area pain I have.

Just need a really smart doctor......

[janiedelite]

Sorry, but I don't have any experience with Mayo other than going there myself for dysautonomia. However, there is a GREAT online support group at http://www.lsoft.com/scripts/wl.exe?SL1=CARCINOID&H=LISTSERV.ACOR.ORG. Dr. Woltering actually chimes in on most days to answer the more perplexing questions!