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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siluka | @siluka | Jun 18 3:39pm

In reply to @kaforester3 "I’m not sure how to do that. I can’t go to another doctor in KS. The..." + (show)

I am in Australia and waiting to see what the next step for me (lesion liver) but from what i know here if you see a new dr you can request your medical records be sent to your new dr. All you need to do is sign a request to release medical information form

kaforester3 | @kaforester3 | Jun 18 7:02am

In reply to @siluka "if you are concerned seek another opinion." + (show)

I’m not sure how to do that. I can’t go to another doctor in KS. The other GI doctors stick together and won’t see me. I can however go back up to Mayo in MN I guess. He was a great doctor and I’m sure can figure it out for me.

siluka | @siluka | Jun 17 9:18pm

In reply to @kaforester3 "I just got the test done again on June 7th. The test result is 302. However,..." + (show)

if you are concerned seek another opinion.

kaforester3 | @kaforester3 | Jun 16 9:27pm

In reply to @hopeful33250 "Hi @kaforester3, It sounds like you have had a lot of digestive tract problems. Problems with..." + (show)

No I have never had a 68Ga DOTATATE Positron Emission Tomography (PET). I just got the urine test but the results are not back yet.

kaforester3 | @kaforester3 | Jun 16 9:24pm

In reply to @anxious88 "Could you update when you check again your chromogranin levels, please?" + (show)

I just got the test done again on June 7th. The test result is 302. However, the test was done through Quest Diagnostic and it says it is in range now. I’m not sure how I feel about the result though because I’m fighting fatigue all the time and I always have pain on my lower right abdomen. I do not have an appendix anymore, so it’s not that. I feel like I cannot get someone to listen to me that something is wrong.
I just did a colonoscopy and an EGD all the biopsies were normal but the Calprotectin level from a stool sample was 82. Should I give the Mayo Clinic a call again or just trust the doctors in KS that seemed to not be looking at all the results.

sueborfl | @sueborfl | Jun 11 12:00pm

I can surely understand your concern. My CGA was over 1000 and scared me to death. I read too much on the internet and was convinced that cancer and tumors would be my dx. Not so, clean blood results 2nd time around plus urine testing. Now only low grade anemia was of concern. I have had Lyme disease for over 35 yrs and have taken every imaginable medication plus digestive aids in that period. It can be the tums, omeprazole and other anti acid products that can raise the levels. In my case nothing to do but realize I have an infectious disease and do what I can to keep healthy with all the meds I take. Other simple factors can have a bearing like ongoing stress and other personal issues that can raise this odd blood level. Keep positive and go along with the tests to rule out the worst. And realize the best out of this can occur!

anxious88 | @anxious88 | May 29 12:57pm

In reply to @bestrong "Thank you! It was hard. It was an 'open' MRI and the my husband was holding..." + (show)

Could you update when you check again your chromogranin levels, please?

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siluka | @siluka | May 27 3:28pm

In reply to @anxious88 "Hey! What did you MRI and CT show up?" + (show)

I do not see my specialist until mid June, but I did see my gp. I have a total of 6 liver lesions all different characteristics one however has grown slightly and the report said likely represents metastasis.

anxious88 | @anxious88 | May 27 1:01am

In reply to @siluka "hi i had a bowel section to remove net tumours and also lymph nodes my cga..." + (show)

Hey! What did you MRI and CT show up?

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siluka | @siluka | May 10 3:50pm

In reply to @hopeful33250 "That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of..." + (show)

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.