I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?

For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.