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← Return to Pancreastatin level at 1500
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Neuroendocrine Tumors (NETs) | Last Active: Aug 11 8:20pm | Replies (31)
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What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had three scans, all negative, and don’t want anymore because my hair is exiting my scalp. Occasionally my heart races and I feel dizzy and I have weird hot flashes.
Is pancreastatin a blood test I should ask for? None of my doctors has requested anything but four (so far) Chromogranin A tests and two HIAA tests. The latter were negative. I’m so weary of all this and wish someone would find a solution.
Replies to "What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had..."
Hey! Can I ask you if you fin the cause of your high chromogranin levels? I am currently in the same situation
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POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system that causes issues with heart rate and blood pressure. I was diagnosed after a tilt table test done at Mayo. That's interesting. I had normal chromogranin A but high pancreastatin and slightly elevated HIAA levels. It would not hurt to ask your Dr about it to get their opinion. Every doctor that I have spoken to in regards to pancreastatin has given me a different opinion. Some of the doctors believe a higher than normal pancreastatin is indicative of having a NET. I completely understand where you are coming from. The last provider I saw " said it seems like you have been on a very long road trying to get a diagnosis ". I had to hold back my emotions and just say yes yes I have been. I hope you find the answers and your able to get a diagnosis.