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Pancreastatin level at 1500

Neuroendocrine Tumors (NETs) | Last Active: Sep 12, 2022 | Replies (29)

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@cfuller84

Yes it's good to hear from you too. I plan on posting again and will keep you updated 🙂 I have been taking several vitamins and also doing accupuncture and my abdominal pain has improved though not gone away. I still feel very fatigued all the time, and I also get the heart racing episodes where it feels like my heart is pounding very hard and fast and I feel dizzy. I was diagnosed with POTS at mayo and they think that is the cause. I wonder if other nets patients get similar symptoms. I also saw on another post someone recommended a new copper pet scan I think I will definitely look into that if they are wanting me to get another pet scan. Hope you have a wonderful weekend.

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Replies to "Yes it's good to hear from you too. I plan on posting again and will keep..."

I am glad to hear that your abdominal pain is somewhat better.

Wishing you well, @cfuller84. When you get the results of your newest group of tests, will you post again?

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.