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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@hopeful33250

That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of digestive issues is great. Posts, like yours, encourage others who are facing surgery.

I'm wondering if there was a specific eating plan that helped you after the surgery of the ileum? Any do's or don'ts that you might want to pass on to others who are anticipating this type of surgical treatment?

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always keep an eye on your iron and b12 levels with blood tests. I do get b12 injections every 3 months and take multivitamins. Also I have here in Australia Sustagen a nutrition supplement which comes in powder for (like milo). I eat most foods now but still cannot tolerate some acid producing foods like tomato. Dietitians put me on a high protein diet. Still i cannot gain much weight but trying. hope this helps.

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@siluka

i actually feel good since surgery. I have had check up every 6 months since surgery. they found 1 lesion hypervascular on ct then sent for pet ct scan and no up take (may 2023) mri in october 2023 and it showed 3 lesions on liver undetermined. Had ct scan yesterday and mri on Monday. then see my surgeon in June. Digestive after surgery has been great. I can now eat food i couldn't eat before used to get GERD badly. I did have 1.5m of my ileum removed

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That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of digestive issues is great. Posts, like yours, encourage others who are facing surgery.

I'm wondering if there was a specific eating plan that helped you after the surgery of the ileum? Any do's or don'ts that you might want to pass on to others who are anticipating this type of surgical treatment?

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i actually feel good since surgery. I have had check up every 6 months since surgery. they found 1 lesion hypervascular on ct then sent for pet ct scan and no up take (may 2023) mri in october 2023 and it showed 3 lesions on liver undetermined. Had ct scan yesterday and mri on Monday. then see my surgeon in June. Digestive after surgery has been great. I can now eat food i couldn't eat before used to get GERD badly. I did have 1.5m of my ileum removed

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@siluka

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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Hello @siluka and welcome to Mayo Connect.

Your concern about the CgA levels and the lesions on the liver are all understandable. How are you feeling since your surgery? Are you able to eat without digestive issues?

I'm glad that you will have a follow up CT and MRI this week. Do these tests represent the first follow up since your surgery?

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@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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eye mask and counting. Also had someone touch my foot through out scan

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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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@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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Chronic kidney disease is a cause of elevated CgA

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@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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@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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@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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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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