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High or Fluctuating Chromogranin A Level: What does it mean?
Neuroendocrine Tumors (NETs) | Last Active: Jun 18 3:39pm | Replies (184)Comment receiving replies
Hi. My Chromagranin A also elevated at 2590, an elevated 5-HIAA and elevated somatostatin level. Octreo scan was abnml for possible tumors abdomen/pelvis and PET scan showed possible area in the uncinate (curve) of the pancreas. LDCT Lungs showed 6-7 small < m nodules scattered throughout both bases. I have been being tested since January this year due to rapid weightloss, cramping, diarrhea, nausea, pain right/left upper abdomen, left side around to the mid back.
I had MRI at Beginning of June that said none of what nuclear scans shows are present, no lung nodules in bases, nothing in pancreas. Nml MRI? I don't understand. How can all other tests be completely wrong? Any ideas?
Replies to "Hi. My Chromagranin A also elevated at 2590, an elevated 5-HIAA and elevated somatostatin level. Octreo..."
Has any of your doctors suggested Ga68 Dotatate PET scan? This is very specific for functioning NETs!
Please, let us know how you are and what is next! Prayers for some clear answers!🙏💜🦓
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Hello @debona2113
I am sorry to hear that you are still struggling to get a diagnosis for these health issues you are experiencing. Has anyone suggested a Gallium 68 PET scan? Here is some information about this scan that is the best at detecting NETs and/or carcinoid tumors. This test is more effective than the Octreoscan or an MRI.
--69 Gallium Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
How much weight have you lost since these symptoms began? Are you able to get a second opinion at a research-oriented medical facility such as a university medical school or a facility like Mayo Clinic?