High or Fluctuating Chromogranin A Level: What does it mean?

Yes, I am certainly aware of the "too many pills" problem, @dbmenger! I am glad to hear that the Fodmap eating plan is working for you.

On Connect we have a Fodmap eating discussion. Here is the link, https://connect.mayoclinic.org/discussion/fodmap-eating-plan/.

I would encourage you to take a look at the posts in this discussion. You might gain some information but you might also add some positive feedback to others.

I look forward to hearing from you after your next blood draw.

I have that “throw up in my mouth” if I don’t stick to the FODMAP diet. Ugh, acid.
I want to try taking a smaller dose of Cimeditine when I can in a week or maybe just stay with my Rolaids chewies. Too many pills!

@dbmenger

Yes, I'm sure it has been an uncomfortable month. What are your most difficult symptoms without this med?

It should be interesting, though, to find out how the level is after discontinuing the Cimeditine.

Will you post an update?

I have another blood test on July 26, when I will have been off Cimeditine for a very long, uncomfortable month. 🙁

I'm so glad to hear of that @dbmenger! You must feel relieved!

Will you be having any follow-up tests?

Thank you! My scan was negative; the urine test normal and my latest chro blood level is 393, which my doctor feels is normal (?).

Did you also have the HIAA5 urine test? I had a 540 Chromogranin test result. Two Gallium scans and two 24-hour urine tests later, both were negative.
My doctor thinks it’s because I have reflux and take 400 mg of cimetedine twice daily and the chromogranin test was high because of that. I have another test in a week to prove this diagnosis.
I think you need the HIAA test to set your mind at ease before your scan.
My only syndrome symptom was hot flashes, which are annoying and weird because I had a hysterectomy 25 years ago.
Also, my primary-care doctor, endocrinologist, gastroenterologist and oncologist have been conferring as to these tests. Obviously it takes a village!
Mayo has good information on carcinoid syndrome and it’s symptoms, BTW.
Blessings and good luck!

Hello @dbmenger

I hope this post finds you doing well. I recall that you would be getting some test results on July 6. I just wanted to check-in with you to see if received any new information from those tests.

I would enjoy hearing from you, Will you post an update when it is convenient for you?

Hi, there. Be calm. My Chromogranin A levels were 504 on my last blood test. HIAA 5 test and Gallium Donotate scan were normal in June. I had all three tests six months ago and the results were the same, although my level was 254 then.
My endocrinologist suggested I remove myself from cimeditine, which I’d been taking 800 mg a day for years and PPIs before that (Ugh - avoid). In a month I will have another chrongranin test that she thinks will be normal. In her research she found that the -ditines can raise your level to abnormal scary limits. I believe her.
I had a lobectomy for a spindle-cell carcinoma almost five years ago so I understand how this chromogranin thing can reduce you to rubble.
Oddly, I feel fine without the cimeditine anyway.

@dbmenger I'm glad to hear that the scanxiety posts were helpful to you. The waiting time is by far the worst thing in the medical process. I hope that you have good results to ease your mind.

If you are comfortable doing so, will you post again after you learn the results?