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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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)
@hopeful33250

Hi @kaforester3,

It sounds like you have had a lot of digestive tract problems. Problems with swallowing makes eating so difficult.

Has your doctor ordered the 24-hour urine test (5HIAA) as well as a serotonin blood test? If not, I suggest that you request both tests.

You mentioned having an octreotide scan. There is another test, more precise in finding neuroendocrine tumors called 68Ga DOTATATE Positron Emission Tomography (PET). Here is a link that will give you more information about this test, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. You might ask if a hospital in your area has this type of equipment available.

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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.

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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)
@kaforester3

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.

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if you are concerned seek another opinion.

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1 reply
kaforester3 | @kaforester3 | Jun 18 7:02am
In reply to @siluka "if you are concerned seek another opinion." + (show)
@siluka

if you are concerned seek another opinion.

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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.

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1 reply
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)
@kaforester3

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.

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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

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