1. < Neuroendocrine Tumors (NETs)

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

Posted by kaforester3 @kaforester3, Apr 24, 2020

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone ever had levels that high and what did the doctor say was wrong with you? I’m kind of freaking out bc they are jumping right in and sending me to get a octreotide scan in the next week. Someone please help me because the GI doctor isn’t saying anything.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 11, 2023
In reply to @debona2113 "How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level..." + (show)
@debona2113

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level elevated. Nuclear PET and Octreo scan both show possible tumors, curve (uncinate) of pancreas, abdomen and pelvis. LDCT lung scan for smoker shows 6-7 < m nodules in both lung bases. All of the sudden an MRI is done and everything seen on scans is no more? Which tests are lying. It all started with 40 pound wgt loss, diarrhea, cramps, left/right upper abd pain around to mid back, nausea and vomiting bile, headaches, mid back pain ALL since 1-2023.

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I am not a medical professional, so I can't answer your medical questions, @debona2113. That's why I advise you to go to a research-oriented health care institution for a second opinion.

Can you call for a second opinion?

REPLY
debona2113 | @debona2113 | Jul 12, 2023
In reply to @hopeful33250 "Hello @debona2113 I am sorry to hear that you are still struggling to get a diagnosis..." + (show)
@hopeful33250

Hello @debona2113

I am sorry to hear that you are still struggling to get a diagnosis for these health issues you are experiencing. Has anyone suggested a Gallium 68 PET scan? Here is some information about this scan that is the best at detecting NETs and/or carcinoid tumors. This test is more effective than the Octreoscan or an MRI.

--69 Gallium Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

How much weight have you lost since these symptoms began? Are you able to get a second opinion at a research-oriented medical facility such as a university medical school or a facility like Mayo Clinic?

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Oh yes 32 lbs loss sine January 2023, can't do more than 2 bites here and there causes fullness and nausea.

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pavlina60 | @pavlina60 | Jul 12, 2023
In reply to @debona2113 "Hi. My Chromagranin A also elevated at 2590, an elevated 5-HIAA and elevated somatostatin level. Octreo..." + (show)
@debona2113

Hi. My Chromagranin A also elevated at 2590, an elevated 5-HIAA and elevated somatostatin level. Octreo scan was abnml for possible tumors abdomen/pelvis and PET scan showed possible area in the uncinate (curve) of the pancreas. LDCT Lungs showed 6-7 small < m nodules scattered throughout both bases. I have been being tested since January this year due to rapid weightloss, cramping, diarrhea, nausea, pain right/left upper abdomen, left side around to the mid back.

I had MRI at Beginning of June that said none of what nuclear scans shows are present, no lung nodules in bases, nothing in pancreas. Nml MRI? I don't understand. How can all other tests be completely wrong? Any ideas?

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Has any of your doctors suggested Ga68 Dotatate PET scan? This is very specific for functioning NETs!
Please, let us know how you are and what is next! Prayers for some clear answers!🙏💜🦓

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1 reply
debona2113 | @debona2113 | Jul 13, 2023
In reply to @pavlina60 "Has any of your doctors suggested Ga68 Dotatate PET scan? This is very specific for functioning..." + (show)
@pavlina60

Has any of your doctors suggested Ga68 Dotatate PET scan? This is very specific for functioning NETs!
Please, let us know how you are and what is next! Prayers for some clear answers!🙏💜🦓

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Dotatate PET completed
Showed suspicious area in uncinate of the pancreas but then MRI did not show anything after that pet scan. ?? Seems like I am just stuck. 2 nuclear tests say positive along with tumor marker labs but tha MRI test I did a week after all of them was normal. Nothing seen.

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pavlina60 | @pavlina60 | Jul 13, 2023

From what I read and my experience GaDotatate is more sensitive than MRI. Talk to your Dr.
🙏💜🦓

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1 reply
debona2113 | @debona2113 | Jul 13, 2023
In reply to @pavlina60 "From what I read and my experience GaDotatate is more sensitive than MRI. Talk to your..." + (show)
@pavlina60

From what I read and my experience GaDotatate is more sensitive than MRI. Talk to your Dr.
🙏💜🦓

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Same as I thought. Octreo scan also done shoeing possible tumors anterior abdomen and pelvis. Had new patient Video with Mayo GI yesterday. He believes MRI, which showed nothing. More tests to be ordered.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 13, 2023
In reply to @debona2113 "Same as I thought. Octreo scan also done shoeing possible tumors anterior abdomen and pelvis. Had..." + (show)
@debona2113

Same as I thought. Octreo scan also done shoeing possible tumors anterior abdomen and pelvis. Had new patient Video with Mayo GI yesterday. He believes MRI, which showed nothing. More tests to be ordered.

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Glad to see that you have had a consultation with Mayo. You mentioned that other tests were ordered. Have these been scheduled yet?

As you are comfortable doing so, what are type of tests are you having?

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dbmenger | @dbmenger | Jul 15, 2023

How high are your levels? Mine are up and down in the 500s but the urine test and Dotatate scan(s) were normal.
My doctors think I’m an anomaly, which I guess is medspeak for “I don’t know.”

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1 reply
debona2113 | @debona2113 | Jul 16, 2023
In reply to @dbmenger "How high are your levels? Mine are up and down in the 500s but the urine..." + (show)
@dbmenger

How high are your levels? Mine are up and down in the 500s but the urine test and Dotatate scan(s) were normal.
My doctors think I’m an anomaly, which I guess is medspeak for “I don’t know.”

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2590 chromagranin A, I know HIGH right. Dotatate scan positive area pancreas and octreo scan showed abdominal and pelvis masses. 1 MRI done after all the lab and positive nuclear scans says nothing there. I am so afraid that with all the positives they are missing something that lab scans say is there.

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peg152 | @peg152 | Jul 23, 2023
In reply to @gsm13161 "A chromogranin level of 1800 is quite high and taking account your blood pressure and a..." + (show)
@gsm13161

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.

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I had another PET last week. They suggest I get an Adrenal MRI… possible tumors. Had cysts on m kidneys for years. Trouble with maintaining blood pressure high heart rate and problems regulating blood sugars (on metformin and insulin pens). last Chromogranin A was 1414.

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