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

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?

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!

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

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

Will you be having any follow-up tests?

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

@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 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!

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.

Does anyone but me have fluctuating high Chromogranin-A levels and normal HIAA-5 and Gallium scan results? I’ve had five blood tests, two urine tests and two scans. The blood test is always between 360-530 and my doctor said today it was a mystery to him. My endocrinologist had me off Pepcid for a month - the levels went up. My oncologist wants to do yet another scan. I quit having hot flashes (my only carcinoid syndrome symptom besides the blood test) when I started taking black cohash. What is wrong with me - or is it the blood test? Help!

Hello @dbmenger

I see that you are still dealing with high fluctuating high Chromogranin-A levels and normal results from other tests and scans. I remember that you have posted about this in the neuroendocrine group as well. Sometimes the Chromogranin-A levels can be high due to other health and/or medication issues. However, I know that your concern is understandable. I've had the same experience myself. My GI specialist stopped doing this particular blood test since all other scans, MRIs, and blood work were normal.

Have you considered getting a second opinion from a university medical school in your area or perhaps a facility like Mayo Clinic?