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

Thank you for your reply! I have my endocrinologist, oncologist and gastroenterologist (I seem to have my own clinic) looking at this anomaly - led by my PCP.
All this chromogranin business started with hot flashes I had out of the blue 20 years after a hysterectomy and two years after cessation of Premarin. I’m still flashing - and I have weird chromogranin results. I’m thinking it’s going to be part of my permanent persona.
We have a university medical center here; I just need to figure out where to go there.

@dbmenger I hope that you do get another opinion. Another opinion can at least put your mind at ease or give you an answer. Either way, you need to have some answers.

Will post again as you have questions and look for help?

Good Morning. I recently had a (68)Ga-DOTATATE PET/CT because of a very high Chromogranin A level-1600. I also had facial flushing after eating high histamine/&/Spicy foods.
The results appeared to be within normal limits. My doctor recommended repeating the blood test every year.
I was told a high Chromogranin A level may be due to my PPI (nexium) 15 yr use for Portal hypertension. Also, chronic gastritis can raise blood levels .

However, I know have learned the injection of gallium solution protocol may be the day before testing. I had my injection & test in a two hour period. Any suggestions or comments regarding protocol of Gallium 68 PET -I would appreciate.

I would suggest working with a GI specialist, but also a reputable Immunologist/Allergist…identified my Chromogranin A issue. Also seeing a Homeopathic doctor-unorthodox but has help me a great deal.

I am located in NJ…if you need any doctor referrals. Wishing you the best.
Keep positive and follow your instincts.

TKFC

Thank you, Tracy! Wow - 1600! My last level was in the 500s.
However, I just had an appointment with my PCP who wants to keep doing the Chromogranin blood test monthly. I think it can wait until December when I see my oncologist. Give it time to do it’s thing instead of bugging it (and me while I wait for the results).
My Gallium scans have made my hair fall out and I’d prefer to wait on any more scans, too. They were both negative, as were the two HIAA5 urine tests.
I had the injection and started the test within an hour (after drinking a pint of water).
My gastroenterologist is unconcerned about the Chromogranin numbers. All I have are hot flashes for a symptom - he suggested black cohosh and cooler air-conditioning. Both help - as does acupuncture.
Maybe you and I are just anomalies - I certainly hope so!
Blessings!

My hair has been exiting my scalp. My husband thinks it’s because I’ve had three Gallium scans in less than a year to search for a tumor that is the reason I have hot flashes. Isn’t this the definition of insanity: Trying the same thing over and over in hopes of a result that differs - but doesn’t? Sigh.
Now my oncologist wants to do a Dotentate (?) scan and my PCP wants another Chromogranin A blood test (The last was a month ago).
It’s no wonder my blood pressure skyrocketed and I’m on medication for that. I am reminded of Cinderella’s stepsisters trying to squeeze their feet into her little glass slipper - they’re going to make it fit regardless of the harm they have to do. Maybe a hot flash is just that and the fluctuating Chromogranin levels are just the way I am.

I do hope we are blessed! Quick question…when you had your Gallium 68 PET/CT, when did the technician administer the gallium injection? I have recently learned the time frame is essential in the accuracy of this test. It has been suggested to me to repeat blood work as well; then, possibly a consult w/Sloan Kettering to rule out. Best to you. Thank you.

Hello @tracyfurtiscaudle and welcome to Mayo Clinic Connect. You have certainly done a lot of research on this matter of high Chromogranin A levels and I applaud your persistence in taking charge of your health and learning as much as you can.

You are certainly right, that there are many factors that can raise the Chromogranin A levels. The use of PPI meds is one of them. Your suggestion of seeing an immunologist and an allergist were good recommendations.

Could you share with us what foods are considered "high histamine foods?"

Where do you stand now with your symptoms? Have you found any other causes or treatments?

I am currently seeing a homeopathic doctor who has prescribed ABP1 Assist Histamine/Gut & Histamine Scavenger both by MethylGenetic Nutrition. It is a DAO (diamine oxidase)
Supplement. It helps with flushing & GI issues. I am currently having a 3 day allergy patch test done to rule out chemicals. Plus,I am currently on a low histamine diet which seems to help with facial flushing & abdominal pain too. My doctor also wants me to be tested for IBS & SIBO - both intestinal issues w/methane/hydrogen breath test/ follow FODS Mapp diet too.
Following Histamine Food Compatibility List (Sweden). (https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf) Many other sites for recipes by people w/Histamine intolerance-big help. Agree…PPI may be the issue for High Chromogranin A-I have PHT& gastritis and taking 40mg (& sometime s add’l 20mg of Esomeprazole. Had a splenic renal shunt 17 years ago-so been on PPI’s forever. May have to cold turkey PPI & retake Chromogranin A blood test.
I needed to take a breath after PET scan…so I will revisit/pursue the Chromogranin A level issue w/GI Dr.
Wow-I have said a lot! Hope it can help.
Best to you

I am currently taking a histamine blocker for my facial flushing & GI issues. The high Chromogranin A level may be as a result of my almost 20 year PPI for Portal hypertension. Moreover I received Reclast infusion in Dec 2020 & it seems as though these symptoms became more acute after infusion. I am also taking hydrolysate collagen which seems to help with GI issues. Thank you for sharing your information/medical PET scan experience. I plan to revisit the high Chromogranin A issue within the upcoming weeks. I needed a breather…going on since Jan 2021. I am seeing my immunologist again to rule out some chemical allergies. I have seen an oncologist: recommended possibly a bone marrow test. Large University Hospital I recently visited recommended (for now) limit PPI’s & retest bloodwork.
As of today (had PET 6/28/21) my hair is still ok. So sorry you have gone through so much …again, thank you for sharing and making me feel I am not alone with this unique situation.
Wishing you health & resolve. Please keep me posted with your journey.

Hi @tracyfurtiscaudle

In August you posted about your high Chromogranin A level and you were trying different treatments. I hope you are feeling better.

I would enjoy hearing from you. Could you post an update?