Chromogranin A

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Chromogranin A

by aquaholical on Fri Dec 02, 2016 01:56 PM

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Hi there,

I have been seeing an allergist for suspected Mast Cell Activation Disorder and for the tests they always check for markers of things that mimic mast cell, like carcinoids. Most of my blood work was unremarkable with the exception of chromogranin A - it was elevated. (& 5-HIAA was not reported for some reason)

My doctor told me not to worry, that CgA can give false positives. But upon research I'm only seeing that it gives false positives with PPIs/renal failure/certain meds, none of which apply to me. He's sending me for an Octreotide scan in a few weeks to rule a tumor out. However, when I talked to an NET patient on another site, he warned me that these tumors can be hard to locate and that one single scan couldn't "rule out" carcinoid. He said it took 5 years and 10 scans to find his tumor. 

Can anyone point me towards some good sources for this information? When I follow up with my doctor after the scan in a few weeks I want to be armed with solid research. I'm afraid his ego is going to get hurt from me suggesting he's misinformed about being able to "rule out" carcinoid after just one scan. (you know how some doctors are...)  

RE: Chromogranin A

by Rightway56 on Sat Dec 03, 2016 04:57 AM

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On Dec 02, 2016 1:56 PM aquaholical wrote:

Hi there,

I have been seeing an allergist for suspected Mast Cell Activation Disorder and for the tests they always check for markers of things that mimic mast cell, like carcinoids. Most of my blood work was unremarkable with the exception of chromogranin A - it was elevated. (& 5-HIAA was not reported for some reason)

My doctor told me not to worry, that CgA can give false positives. But upon research I'm only seeing that it gives false positives with PPIs/renal failure/certain meds, none of which apply to me. He's sending me for an Octreotide scan in a few weeks to rule a tumor out. However, when I talked to an NET patient on another site, he warned me that these tumors can be hard to locate and that one single scan couldn't "rule out" carcinoid. He said it took 5 years and 10 scans to find his tumor. 

Can anyone point me towards some good sources for this information? When I follow up with my doctor after the scan in a few weeks I want to be armed with solid research. I'm afraid his ego is going to get hurt from me suggesting he's misinformed about being able to "rule out" carcinoid after just one scan. (you know how some doctors are...)  

5-HIAA is a 24 HR urine collection. When I had my octreoscan mine did not light up on the scan but had one in left lower lobe plus 8 to 10 other nodules. I have been battling carcinoids since 2014 and now found the cause. I have DIPNECH, which is an endocrine disease. These are tumorlet cells the side of freckles that grow into lung carcinoids the carcinoids are cancer. So it may take a while because they are small and slow growing. I would suggest to watch utube seminars on carcinoids. Look for Dr. Eric Liu. He is the expert on carcinoids I learned a lot. I now see him in Denver Colorado. If your looking to learn or diagnose Carcinoids he is the expert in Neuroendocrine Tumors, or Carcinoids. My chromogranin A was slight elevated to high end of normal. My 5-HIAA my normal I still have carcinoids. Hope this helps.

RE: Chromogranin A

by aquaholical on Mon Dec 05, 2016 02:51 PM

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Thank you so much for taking the time to respond, this is very helpful!

RE: Chromogranin A

by LauriG on Fri Dec 30, 2016 01:48 PM

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Hi Aquaholical, you are right to not accept a "ruling out" of carcinoid from one scan. I got diagnosed with Carcinoid Syndrome in 2010 (due to syndrome symptoms and my blood serotonin tests sometimes coming back elevated). CgA was only high once and I was on PPI at the time. Octreoscan 2010 negative. Sandostatin helped control the symptoms which confirmed the diagnosis. Have been having Ga68 Dotatate PET scans (much better at finding NETs than Octreoscan) at least once a year since 2011. Nothing showed until some bone metastases appeared in 2014. They are still all that is visible in 2016, so no primary found even with the best scanning available.

Is it possible that your Mast Cell symptoms are Carcinoid Syndrome instead? Having said that, I am pretty sure I have heard a couple of people on some of the Facebook groups I am on have Mast Cell and Carcinoid. Let me know if you would like further details.

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