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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (109)Comment receiving replies
Carotid body paraganglioma. Diagnosed two weeks ago. Unilateral, left side, grade 2 internal carotid and grade 3 external.
Question about blood and urine catecholamines test. Did your paraganglioma secrete? I have heard that neck paragangliomas only secrete norepinephrine if they do at all. Not other hormones.
What are considered to be the high numbers? I am 790 pg/mL for Norepinephrine, 47 pg/mL for Epinephrine, and 38 pg/mL for Dopamine on the plasma test. Thanks in advance. V
Replies to "Carotid body paraganglioma. Diagnosed two weeks ago. Unilateral, left side, grade 2 internal carotid and grade..."
Hello @coachv and welcome to Mayo Connect. I'm glad that you found this forum. It is so helpful to be able to communicate with others who share a similar diagnosis.
If you are comfortable sharing more information, I'm wondering what type of symptoms led to this diagnosis? Has a treatment plan been put in place?
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My tumor did not secrete. I don’t remember what “normal” numbers are now, but my labs were never out of range. I did the 24 urine test twice - once with my primary and again with the Mayo lab, and both were fine. I also did an endocrine test before my surgery and that was good as well. My tumor was thought to be a CBT but ended up being vagal instead. Not sure if that makes a difference or not. Good luck!
If you are on Facebook, there is a group called Pheochromocytoma and Paraganglioma Support Group. There is a lot of great information there.