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.

eljay1 | @eljay1 | Jun 21 10:54pm

The only person who suggested anything was my Allergist. He wants me to try a bunch of medications to see if I feel better. I’m not really comfortable with this approach.

eljay1 | @eljay1 | Jun 21 10:59pm

In reply to @lindabees "That will definitely have an impact on the chromogranin test results. Because of that, many net..." + (show)

I’ve been reading studies about that. No one seems to know how much of an effect it would have on the test. Even oncologist was unsure. They want me to go off the nexium for one week before having another blood test but I’m concerned about that. I take Nexium for a reason.

lindabees | @lindabees | Jun 22 12:01am

In reply to @eljay1 "I’ve been reading studies about that. No one seems to know how much of an effect..." + (show)

Taking a break for the test makes sense. I hope you sail through ok.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 22 10:55am

In reply to @eljay1 "I’ve been reading studies about that. No one seems to know how much of an effect..." + (show)

@eljay1

You might ask your doctor if you can substitute a non-PPI med, like Pepcid, for the week you need to be off the Nexium and see what the doctor says. Pepcid is not as effective as Nexium, but it might provide some relief for a week.

sydmiller1 | @sydmiller1 | Jun 22 2:03pm

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.

kevinmonroemi | @kevinmonroemi | Jun 22 6:40pm

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 23 11:08am

In reply to @sydmiller1 "I hope you get answers soon. As someone who recently had a lung NET I know..." + (show)

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/?search=Lung#discussion-listview
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?

Teresa, Volunteer Mentor | @hopeful33250 | 22 hours ago

In reply to @eljay1 "My nutritionist ordered the tests. She and my Allergist think that I probably have MCAS." + (show)

@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/?search=MCAS
I encourage you to read the posts and make comments or ask questions to any of the members who have posted about this issue.

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