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.

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bestrong | @bestrong | Apr 6 6:05am
In reply to @hopeful33250 "Hello @bestrong and welcome to the NETs discussion group on Mayo Connect. If you read the..." + (show)
@hopeful33250

Hello @bestrong and welcome to the NETs discussion group on Mayo Connect. If you read the posts in this group, you will find a lot of information about the different reasons for an elevated CgA. Many medications or other health problems can cause an elevation in the test results. There usually is not just one test that can diagnose any disorder. There needs to be a combination of factors involved.

As this is your first post, besides the flushing, what other symptoms were you having that led to the CgA test?

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Hello.
I had Covid at the end of November. It took me 3 weeks to recover. Then fluctuations in the blood pressure began. My cardiologist reassured me that everything is fine with my heart and that the slightly high blood pressure is due to my hronical kidney disease. Nevertheless, at the end of February my GP decided to do many blood tests, chest x rate and 24 urine tests to be on the safe side as my blood pressure goes from low to moderate high - 140/100.
All test came back normal except CgA.
I am taking just Tritace 5 mg, iron, vitamins B and D. Actually nothing that could explain these high CgA levels. My MRI is on Monday and I am honestly really scared as on the top of everything I am quite claustrophobic.

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3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 6 6:39am
In reply to @bestrong "Hello. I had Covid at the end of November. It took me 3 weeks to recover...." + (show)
@bestrong

Hello.
I had Covid at the end of November. It took me 3 weeks to recover. Then fluctuations in the blood pressure began. My cardiologist reassured me that everything is fine with my heart and that the slightly high blood pressure is due to my hronical kidney disease. Nevertheless, at the end of February my GP decided to do many blood tests, chest x rate and 24 urine tests to be on the safe side as my blood pressure goes from low to moderate high - 140/100.
All test came back normal except CgA.
I am taking just Tritace 5 mg, iron, vitamins B and D. Actually nothing that could explain these high CgA levels. My MRI is on Monday and I am honestly really scared as on the top of everything I am quite claustrophobic.

Jump to this post

I hope all goes well for you on Monday. I know that it is easy to say, "don't worry," but worrying only adds to the stress. The unknown is always scary.

Remember, the CgA , by itself, is not an accurate predictor of cancer, there needs to be other indications. I'm glad that your doctor is following up with the MRI. Keep in touch this weekend if you have concerns or doubts. We are here with listening ears.

Can you think of something you can do this weekend to get your mind off of medical issues? Perhaps a movie, or go out for lunch, talk with a friend?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 9 8:22pm
In reply to @bestrong "Hello. I had Covid at the end of November. It took me 3 weeks to recover...." + (show)
@bestrong

Hello.
I had Covid at the end of November. It took me 3 weeks to recover. Then fluctuations in the blood pressure began. My cardiologist reassured me that everything is fine with my heart and that the slightly high blood pressure is due to my hronical kidney disease. Nevertheless, at the end of February my GP decided to do many blood tests, chest x rate and 24 urine tests to be on the safe side as my blood pressure goes from low to moderate high - 140/100.
All test came back normal except CgA.
I am taking just Tritace 5 mg, iron, vitamins B and D. Actually nothing that could explain these high CgA levels. My MRI is on Monday and I am honestly really scared as on the top of everything I am quite claustrophobic.

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@bestrong, how did you do today?

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1 reply
bestrong | @bestrong | Apr 10 1:26am
In reply to @colleenyoung "@bestrong, how did you do today?" + (show)
@colleenyoung

@bestrong, how did you do today?

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Hello @colleenyoung and thank you very much for asking.
The abdominal MRI went fine and everything looks totally OK. Thanks God!
Nevertheless, we are going to check the CgA levels again in a couple of months.
I hope that this is the right protocol to follow.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 10 9:47am
In reply to @bestrong "Hello @colleenyoung and thank you very much for asking. The abdominal MRI went fine and everything..." + (show)
@bestrong

Hello @colleenyoung and thank you very much for asking.
The abdominal MRI went fine and everything looks totally OK. Thanks God!
Nevertheless, we are going to check the CgA levels again in a couple of months.
I hope that this is the right protocol to follow.

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I'm glad that the MRI looked good, @bestrong! I appreciate your update

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 10 5:25pm
In reply to @bestrong "Hello @colleenyoung and thank you very much for asking. The abdominal MRI went fine and everything..." + (show)
@bestrong

Hello @colleenyoung and thank you very much for asking.
The abdominal MRI went fine and everything looks totally OK. Thanks God!
Nevertheless, we are going to check the CgA levels again in a couple of months.
I hope that this is the right protocol to follow.

Jump to this post

So proud of you, @bestrong. How did you manage to deal with your feeling of claustrophobia? What tips would you give to other people who are worried about doing an MRI?

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2 replies
bestrong | @bestrong | Apr 10 11:38pm
In reply to @colleenyoung "So proud of you, @bestrong. How did you manage to deal with your feeling of claustrophobia?..." + (show)
@colleenyoung

So proud of you, @bestrong. How did you manage to deal with your feeling of claustrophobia? What tips would you give to other people who are worried about doing an MRI?

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Thank you!
It was hard. It was an 'open' MRI and the my husband was holding my hand and was talking to me the whole time.
My trick was to close my eyes before going inside. Nevertheless, I pushed the panic button twice.
I wouldn't recommend the open MRI as it takes much longer than a regular one - almost 1 hour.

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1 reply
anxious88 | @anxious88 | Apr 19 2:54pm
In reply to @anxious88 "@emilyliz16 I am in the same boat right now. I was checking my hormones and my..." + (show)
@anxious88

@emilyliz16 I am in the same boat right now. I was checking my hormones and my CgA came back 200 (upper limit 100). How you doing? I am really stressed

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Hey! I repeat my CgA levels yesterday, waiting for results.
I have a PET DOTATOC scheduled for next friday.
I read you were taking PPIs? Those can rise your CgA levels.
I do not take any meds but I did no fast before the blood test. Could it elevate to 200 my levels?
My anxiety is on the roof!!!

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anxious88 | @anxious88 | Apr 19 2:56pm
In reply to @bestrong "Hello. I had Covid at the end of November. It took me 3 weeks to recover...." + (show)
@bestrong

Hello.
I had Covid at the end of November. It took me 3 weeks to recover. Then fluctuations in the blood pressure began. My cardiologist reassured me that everything is fine with my heart and that the slightly high blood pressure is due to my hronical kidney disease. Nevertheless, at the end of February my GP decided to do many blood tests, chest x rate and 24 urine tests to be on the safe side as my blood pressure goes from low to moderate high - 140/100.
All test came back normal except CgA.
I am taking just Tritace 5 mg, iron, vitamins B and D. Actually nothing that could explain these high CgA levels. My MRI is on Monday and I am honestly really scared as on the top of everything I am quite claustrophobic.

Jump to this post

Chronic kidney disease is a cause of elevated CgA

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siluka | @siluka | May 9 1:05am

hi i had a bowel section to remove net tumours and also lymph nodes my cga then was 364 (2 years ago) last year this time was 103 now 125 i do have 3 lesions on liver which is not known yes ct and mri follow up this week. last year pet scan showed no intake or tumours. I thought my cga was high but others are way higher. yes I am very anxious.

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