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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@peg152

Just got ACTH of5.5 and ortisol of .05 which looks like adrenal insufficiency. Still waiting for doctor. Asked about Addison’s Disease and Pituitary MRI. From what I see this is serious and needs to be dealt with soon! Anyone else know anything about this?

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Hello @peg152

Here is some information from Mayo Clinic's website about Addison's Disease and the tests that are used to diagnose it as well as the treatments. The more knowledge you have the better prepared you will be to discuss this with your doctor.
https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293

What type of specialist are you seeing, Peg?

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@hopeful33250

@musicflowers4u I'm so glad that you posted again about your test results. You must be relieved to know that your scans were clear. My GI doctor is never concerned about my high Chromagranin tests either. There are other health issues that can cause these results to be high.

How are you feeling?

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@hopeful33250 i just received a 600 value and im freaking out. Doctor hasn’t said much and my endo was checking for all my hormones. I have zero symptoms and just PCOS. You said many things can cause a higher level?

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@emilyliz16

@hopeful33250 i just received a 600 value and im freaking out. Doctor hasn’t said much and my endo was checking for all my hormones. I have zero symptoms and just PCOS. You said many things can cause a higher level?

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Hello @emilyliz16 and welcome to Mayo Connect. Yes, a high Chromogramin level can be caused by many health conditions as well as some medications.

If you are comfortable sharing more information, were the blood tests done to address symptoms you were having? Has your doctor ordered any other tests or scans?

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@emilyliz16

@hopeful33250 i just received a 600 value and im freaking out. Doctor hasn’t said much and my endo was checking for all my hormones. I have zero symptoms and just PCOS. You said many things can cause a higher level?

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After my whipple surgery @ pancreas head in May 2023, my Chromograni A went down from 600+ to 400+. Then subsequently it went up to 600+ for next 2 blood tests. Eventually my endo aborted the blood test since then. Should I request for it again?

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@hopeful33250

Hello @emilyliz16 and welcome to Mayo Connect. Yes, a high Chromogramin level can be caused by many health conditions as well as some medications.

If you are comfortable sharing more information, were the blood tests done to address symptoms you were having? Has your doctor ordered any other tests or scans?

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@hopeful33250 i have PCOS AND I have been getting treated for high anxiety lately. Endo was running a lot of test and the level for normal was 335 and mine was 600. I read anxiety and stress can elevate things. I’m on metformin and lexapro. She hasn’t reached out on the test yet but everything else from ATCH and plasma were well within normal ranges. This was a blood test.

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@hopeful33250

Hello @emilyliz16 and welcome to Mayo Connect. Yes, a high Chromogramin level can be caused by many health conditions as well as some medications.

If you are comfortable sharing more information, were the blood tests done to address symptoms you were having? Has your doctor ordered any other tests or scans?

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I’m also 34 female- healthy weight. No high BP and I’ve had extensive blood test saying everything else is good. My anxiety has been very strong the last month and just got the test done (along with cortisol) and I was wondering if stress and anxiety can play a part?

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@emilyliz16

I’m also 34 female- healthy weight. No high BP and I’ve had extensive blood test saying everything else is good. My anxiety has been very strong the last month and just got the test done (along with cortisol) and I was wondering if stress and anxiety can play a part?

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Hello @emilyliz16,

Unfortunately, I'm not a medical professional so I can't comment on what might have caused the high levels that showed up on your blood work. I would encourage you to contact your endocrinologist or other physician, who ordered the blood work, and ask what might have caused these high levels.

I look forward to hearing from you when you have some more information. Will you post again after you talk with your doctor's office?

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@hopeful33250

Hello @emilyliz16,

Unfortunately, I'm not a medical professional so I can't comment on what might have caused the high levels that showed up on your blood work. I would encourage you to contact your endocrinologist or other physician, who ordered the blood work, and ask what might have caused these high levels.

I look forward to hearing from you when you have some more information. Will you post again after you talk with your doctor's office?

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Sure. Totally get it. Just trying to not use Dr.google. Was wondering if stress and anxiety can cause high levels.

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@emilyliz16

Sure. Totally get it. Just trying to not use Dr.google. Was wondering if stress and anxiety can cause high levels.

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I'm really not sure about stress/anxiety, @emilyliz16. When you get more information from your doctor, I'd be interested in the medical opinion.

I agree that Dr. Google is not always the best way to determine a course of action. Will you post after you speak with your doctor?

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After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal, then 7 months ago doubled/trippled. My oncologist ran another PET scan which showed a new tumor in my liver with several white spots, all in the right lobe. Started Lanreotide and 6 months later my blood tests are back in normal range, however I now have several tumors in the right lobe of my liver and a potential new one in what's left of my pancreas. I just met with a surgeon this past Thurs to discuss surgery as an option, he wants an MRI to get a better look at the pancreas to see if it can be removed without interferring with important things that connect to the pancreas. If it's to complicated then treatments will be my only option.

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