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.

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

peg152 | @peg152 | Jul 28, 2023
In reply to @peg152 "I had another PET last week. They suggest I get an Adrenal MRI… possible tumors. Had..." + (show)
@peg152

I had another PET last week. They suggest I get an Adrenal MRI… possible tumors. Had cysts on m kidneys for years. Trouble with maintaining blood pressure high heart rate and problems regulating blood sugars (on metformin and insulin pens). last Chromogranin A was 1414.

Jump to this post

PET came back tumors both adrenals and cysts on kidneys. Urine rest was Meg. Awaiting new Chromogranin A… past were 1507 a year ago and 14-4 a couple months ago. Not sure where to go for adrenal surgery. Mayo, Johns Hopkins or place in Tampa… Adrenal.com

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 28, 2023
In reply to @peg152 "PET came back tumors both adrenals and cysts on kidneys. Urine rest was Meg. Awaiting new..." + (show)
@peg152

PET came back tumors both adrenals and cysts on kidneys. Urine rest was Meg. Awaiting new Chromogranin A… past were 1507 a year ago and 14-4 a couple months ago. Not sure where to go for adrenal surgery. Mayo, Johns Hopkins or place in Tampa… Adrenal.com

Jump to this post

Hello @peg152,

I appreciate the update with regards to the results of the PET. I would like to introduce you to another member who has had this type of surgery, @dawn_giacabazi.

You can also meet other members in another Connect support group. Here is the link,

https://connect.mayoclinic.org/discussion/pheochromocytoma/

Here you will meet, @janfam and @parve, just to name a few.

I hope this helps you in not feeling all alone in this decision you are facing regarding surgery. Will you post again with any other questions or concerns? Also, when you make a decision regarding surgery, please post again.

REPLY
1 reply
peg152 | @peg152 | Aug 1, 2023
In reply to @hopeful33250 "Hello @peg152, I appreciate the update with regards to the results of the PET. I would..." + (show)
@hopeful33250

Hello @peg152,

I appreciate the update with regards to the results of the PET. I would like to introduce you to another member who has had this type of surgery, @dawn_giacabazi.

You can also meet other members in another Connect support group. Here is the link,

https://connect.mayoclinic.org/discussion/pheochromocytoma/

Here you will meet, @janfam and @parve, just to name a few.

I hope this helps you in not feeling all alone in this decision you are facing regarding surgery. Will you post again with any other questions or concerns? Also, when you make a decision regarding surgery, please post again.

Jump to this post

Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also was hospitalized last Feb for liver abscess. Have had sepsis twice before this. Blood sugar and blood pressure hard to regulate yet everyone is dismissive and when I asked for adrenal specialist, oncologist said he didn’t know Endo who specialized in adrenals.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 1, 2023
In reply to @peg152 "Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also..." + (show)
@peg152

Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also was hospitalized last Feb for liver abscess. Have had sepsis twice before this. Blood sugar and blood pressure hard to regulate yet everyone is dismissive and when I asked for adrenal specialist, oncologist said he didn’t know Endo who specialized in adrenals.

Jump to this post

Hi @peg152,

Can you get a referral outside of your current health care system? If so, you might consider a university medical school or a facility like Mayo Clinic for a second opinion. Especially an opinion from someone who deals with adrenal issues.

Will you keep in touch and let me know how you are doing?

REPLY
2 replies
peg152 | @peg152 | Aug 2, 2023
In reply to @hopeful33250 "Hi @peg152, Can you get a referral outside of your current health care system? If so,..." + (show)
@hopeful33250

Hi @peg152,

Can you get a referral outside of your current health care system? If so, you might consider a university medical school or a facility like Mayo Clinic for a second opinion. Especially an opinion from someone who deals with adrenal issues.

Will you keep in touch and let me know how you are doing?

Jump to this post

Of course I will! Looking at either Mayo or Adrenal specialists in Tampa. Worried about cysts and lesions on kidneys, too. Even radiologist said this needs more investigation!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 2, 2023
In reply to @peg152 "Of course I will! Looking at either Mayo or Adrenal specialists in Tampa. Worried about cysts..." + (show)
@peg152

Of course I will! Looking at either Mayo or Adrenal specialists in Tampa. Worried about cysts and lesions on kidneys, too. Even radiologist said this needs more investigation!

Jump to this post

Hoping you get the answers you need, @peg152! Keep in touch.

REPLY
peg152 | @peg152 | Aug 9, 2023
In reply to @hopeful33250 "Hi @peg152, Can you get a referral outside of your current health care system? If so,..." + (show)
@hopeful33250

Hi @peg152,

Can you get a referral outside of your current health care system? If so, you might consider a university medical school or a facility like Mayo Clinic for a second opinion. Especially an opinion from someone who deals with adrenal issues.

Will you keep in touch and let me know how you are doing?

Jump to this post

Does Mayo accept patients on Medicare and secondary insurance? I am 71.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 9, 2023
In reply to @peg152 "Does Mayo accept patients on Medicare and secondary insurance? I am 71." + (show)
@peg152

Does Mayo accept patients on Medicare and secondary insurance? I am 71.

Jump to this post

As I'm not an employee of Mayo Clinic, only a volunteer mentor, I can't answer that question. If you want to know more about billing and insurance here is a link you can use to find out more:
http://mayocl.in/1mtmR63

Here you will see phone numbers for each of the three Mayo locations and you can call and ask about insurance coverage.

I look forward to hearing from you again!

REPLY
peg152 | @peg152 | Aug 17, 2023

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?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.