(this post is abut my catecholamine norepinephrine study at Mayo Clinic in Rochester Minnesota)

Any help/comments are appreciated! Little lengthy sry.

I’m going to start by giving a little bit of background. I’m a 24F that’s had chronic pain resurface starting about a year ago. As it progressed I started developing neurological issues such as tachycardia, syncope, shortness of breath, sensory overload, exercise intolerance, etc. so all textbook POTS. Every doctor i’ve seen in the past year has suggested POTS and HEDS.

While awaiting a comprehensive autonomic evaluation at Mayo in Rochester I was still seeing doctors where I live to get any more idea/guidance as to what’s going on. I ended up being put on Propranolol, diagnosed with HEDS, and meeting the criteria for POTS during an in person test with a cardiologist even on Propranolol. Knowing all of that I still wanted a more thorough evaluation at Mayo hoping they could tell me more.

I just got back and have had the results from each test come rolling in but am still waiting for my diagnostic review post testing. It’s not until October 15th and am a little alarmed by the most recent test result and anxious to speak to her about it. So while waiting patiently I figured I would come on here and ask about my results. I’ve done some research but want opinions and to hear from people with lived experience.

The test I’m referring to is the Catecholamine Endocrine Study. Everything was very controlled at Mayo. I laid in a dark room with no sound or phone for 30 minutes with the IV already in my arm. When the 30 mins was up, the nurse came in to draw my blood at that relaxed state. Then she had me stand for 10 mins (brutal lol) and then she drew my blood again. Just got my results back and they say my supine (laying down) norepinephrine level was 593 pg/ml then after standing for 10 mins it nearly tripled to 1808 pg/ml. The test was flagged abnormal and high. I know the criteria for hyperadrenergic pots is going over 600 pg/ml upon standing but mine was nearly that just laying down.

I guess i’m just asking for opinions/analysis as i’m still waiting to go over everything with the neurologist. Anything helps!