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

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!

@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

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?

@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"

@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

Hello everybody, I hope you are all doing well.
I'm quite worried for my mom (she is the only person I have left in my life), she's 67, has a dolichocolon, and lately they found that her chromogranin A is at 131,5.
Other exams such as CRP, inflammation etc are normal.
She isn't on any medications.

Has anyone of you had a bit high Chromogranin A for no reason? I mean with nothing bad going on, and levels fluctuating ?
6 years ago she was at 100, then at 74. The didn't retest after.

She's having ultrasounds in 3 weeks, I'm just a bit (a lot?) worried during the wait... 🙁
Thanks so much

@eljay1

As you mentioned, as a possible diagnosis of MCAS, I found several posts on Connect where this has been discussed. Here is a link to those discussions.
https://connect.mayoclinic.org/search/
I encourage you to read the posts and make comments or ask questions to any of the members who have posted about this issue.

Hello @sydmiller1 and welcome to the NETs support group on Mayo Connect. It appears from your post that you have recently been diagnosed with a lung NET? Were you having symptoms that led to the discovery of the lung NET?

I invite you to meet some of the members of Connect who have posted about lung NETs. Here is the link to many of those posts :
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I would also like to invite @californiazebra to this discussion since she has been dealing with lung NETs for many years,

Have you begun any treatments yet, such as monthly injections or surgery?

I take a lot of ppi daily I have never been told to stop them before testing and I have asked if I should. They test for Gastrin at the same time if tumors are progressing they go up together if tumors shrink after a treatment they go down together it is a marker between treatments as to what may be happening. Not an expert but that is my understanding and history. So the way I see it if they are not checking for excess hormone levels from functioning tumors it may be a good indicator of what may be happening.

I hope you get answers soon. As someone who recently had a lung NET I know the waiting can be very hard. I leaned into my faith and that helped me. Continue to advocate for yourself.