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.

Profile picture for dbamos1945 @dbamos1945

@cinephile10: ChromograninA results can vary and 1350 is certainly questionable. I have heard this test result can be different regarding the time of day, what supplements or medications ingested as well as foods. It is only part of a diagnosis.
My personal experience says: However, this test result, along with 24hr urine lab and other tests can reveal a serious disease that needs immediate treatment. Perhaps the Dr ordered ultrasound will reveal a suspicious area to be further investigated (biopsy leaves no doubts and will lead to diagnosis).
I don’t share this opinion to scare you, but your 67 yr Mother needs to see the elevated ChromograninA test result as a Warning Sign. I hope this helps you in your combined decisions for best health. Be pro-active and stay informed. Bette dbamos1945

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@dbamos1945 Thank you so much for your answer. Yes, that's for sure, it's better to run all the tests, probably a CT scan also to see everything.
As for the numbers, it's actually considered "slightly" elevated : 131 (normal range < 100)
I talked to a friend surgeon who told me that tumors would give higher numbers, but somehow I still keep worrying... I lost my dad from a surgery so I guess a have a hard time staying zen for my mom when something comes back a bit "weird"

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Profile picture for cinephile10 @cinephile10

@dbamos1945 Thank you so much for your answer. Yes, that's for sure, it's better to run all the tests, probably a CT scan also to see everything.
As for the numbers, it's actually considered "slightly" elevated : 131 (normal range < 100)
I talked to a friend surgeon who told me that tumors would give higher numbers, but somehow I still keep worrying... I lost my dad from a surgery so I guess a have a hard time staying zen for my mom when something comes back a bit "weird"

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Hello @cinephile10 and welcome to Mayo Connect. I see that @dbamos1945 has responded to your post about your mom's elevated ChromograninA results and provided some helpful information. I can certainly understand your concern. Any time a medical test is outside the normal range, it tends to raise red flags. It appears that your mom's doctor is addressing this with an ultrasound. Will this be an abdominal ultrasound? Has her doctor ordered any other blood work or tests?

There are many factors that can raise ChromograninA levels. For example, taking PPI medications is one culprit, as well as other chronic health conditions. On Connect, you will find many posts on this topic. Here is a link to those posts. I would encourage you to read through them and perhaps post your question there:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
How is your mom feeling? What other chronic health conditions does she have? Were there any symptoms that resulted in running this test?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @cinephile10 and welcome to Mayo Connect. I see that @dbamos1945 has responded to your post about your mom's elevated ChromograninA results and provided some helpful information. I can certainly understand your concern. Any time a medical test is outside the normal range, it tends to raise red flags. It appears that your mom's doctor is addressing this with an ultrasound. Will this be an abdominal ultrasound? Has her doctor ordered any other blood work or tests?

There are many factors that can raise ChromograninA levels. For example, taking PPI medications is one culprit, as well as other chronic health conditions. On Connect, you will find many posts on this topic. Here is a link to those posts. I would encourage you to read through them and perhaps post your question there:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
How is your mom feeling? What other chronic health conditions does she have? Were there any symptoms that resulted in running this test?

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@hopeful33250 Hello, I just wanted to give a little update and thank you for your message and your time. I read many of the posts the two past weeks that you recommended, and yesterday my mom had an abdominal ultrasound that was very reassuring as all the organs appeared perfect. The doctors said that they are really not worried, they consider the number "slightly" elevated, and they said they will control again with a blood test end of February.
I'm finally breathing a bit again, and learning that not all medical "weirdness" is a concern, that some results can be a bit off without anything really bad going on

Thanks again for all your help =) I hope you had a wonderful Christmas

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Profile picture for cinephile10 @cinephile10

@hopeful33250 Hello, I just wanted to give a little update and thank you for your message and your time. I read many of the posts the two past weeks that you recommended, and yesterday my mom had an abdominal ultrasound that was very reassuring as all the organs appeared perfect. The doctors said that they are really not worried, they consider the number "slightly" elevated, and they said they will control again with a blood test end of February.
I'm finally breathing a bit again, and learning that not all medical "weirdness" is a concern, that some results can be a bit off without anything really bad going on

Thanks again for all your help =) I hope you had a wonderful Christmas

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I'm so pleased to read your post, @cinephile10, and glad that your mom's ultrasound came back good. Please post whenever you need a listening ear or have any questions or concerns. Happy New Year to you and your family!

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