1. < Neuroendocrine Tumors (NETs)
Profile picture for kaforester3

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 Teresa, Volunteer Mentor
Mentor
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)
Profile picture for eljay1 @eljay1

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.

Jump to this post

@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.

REPLY
Profile picture for lindabees
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)
Profile picture for eljay1 @eljay1

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.

Jump to this post

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

REPLY
Profile picture for eljay1
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)
Profile picture for lindabees @lindabees

That will definitely have an impact on the chromogranin test results. Because of that, many net specialists no longer use that test as a net marker

Jump to this post

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.

REPLY
2 replies
Profile picture for eljay1
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.

REPLY
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 21 8:53pm
In reply to @eljay1 "My nutritionist ordered the tests. She and my Allergist think that I probably have MCAS." + (show)
Profile picture for eljay1 @eljay1

My nutritionist ordered the tests. She and my Allergist think that I probably have MCAS.

Jump to this post

@eljay1

What is your medical team doing to diagnose MCAS?

REPLY
Profile picture for lindabees
lindabees | @lindabees | Jun 21 11:05am
In reply to @eljay1 "Yes. I’ve taken Nexium for at least a decade, probably longer." + (show)
Profile picture for eljay1 @eljay1

Yes. I’ve taken Nexium for at least a decade, probably longer.

Jump to this post

That will definitely have an impact on the chromogranin test results. Because of that, many net specialists no longer use that test as a net marker

REPLY
1 reply
Profile picture for eljay1
eljay1 | @eljay1 | Jun 21 12:25am
In reply to @lindabees "I hope you get an answer to your struggles" + (show)
Profile picture for lindabees @lindabees

I hope you get an answer to your struggles

Jump to this post

Thank you.

REPLY
Profile picture for eljay1
eljay1 | @eljay1 | Jun 21 12:25am
In reply to @lindabees "Have you been diagnosed with a neuroendocrine tumor? As to your high chromogranon, do you take..." + (show)
Profile picture for lindabees @lindabees

Have you been diagnosed with a neuroendocrine tumor?
As to your high chromogranon, do you take PPI's such as pepcid or prilosec? Those are known to increase chromogranin.

Jump to this post

Yes. I’ve taken Nexium for at least a decade, probably longer.

REPLY
1 reply
Profile picture for lindabees
lindabees | @lindabees | Jun 19 11:09pm
In reply to @eljay1 "I have not been diagnosed, but after I had several high results in a row, the..." + (show)
Profile picture for eljay1 @eljay1

I have not been diagnosed, but after I had several high results in a row, the Gastroenterologist sent me to an oncologist.

Jump to this post

I hope you get an answer to your struggles

REPLY
1 reply
Profile picture for eljay1
eljay1 | @eljay1 | Jun 19 10:27pm
In reply to @lindabees "Have you been diagnosed with a neuroendocrine tumor? As to your high chromogranon, do you take..." + (show)
Profile picture for lindabees @lindabees

Have you been diagnosed with a neuroendocrine tumor?
As to your high chromogranon, do you take PPI's such as pepcid or prilosec? Those are known to increase chromogranin.

Jump to this post

I have not been diagnosed, but after I had several high results in a row, the Gastroenterologist sent me to an oncologist.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.