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What’s next: Seeking advice on how to navigate diagnosis appointments?
Neuroendocrine Tumors (NETs) | Last Active: May 20 5:17pm | Replies (38)Comment receiving replies
Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of 381- I have insulin growth of 285. My creatine was also low. My chromin G was normal as was the 24 hour HPPA test. I’m still seeking a diagnosis. I have my follow up with my doctor from MD Anderson Monday via phone and I also was able to schedule a appointment with a carnoid specialist in Miami prior to Mayo. However I’m not sure what generally happens next. Do doctors typically order a Gallium 68 now? Biopsy? Should I push hard for a scan now? Would anyone provide Somatostatin at this point or address the glucose or creatine? Any shared experiences would be welcomed. I’m not looking for medical advice just an idea on having to navigate appoints and how quickly things may or may not move or questions to ask. Thank you!
Replies to "Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of..."
Hello. I can’t add value to your insulin growth factor question, but is your glucose low or are you having hypoglycemic episodes ?
You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68 Pet Scans are used to diagnose / identify Neuroendocrine Tumors (if that is what you / your Mayo doctor is suspecting based on your symptoms/ tests). They provide great detail. Biopsy could potentially follow if something identified.
Mayo has very experienced NeT specialists, which I assume they would refer you to, if you are not scheduled to see one already. Seeing the correct specialist is the most important key.
Some NETs can secrete insulin causing low or volatile glucose levels (can be different than carcinoid NETs). I’m in no way suggesting this could be cause of your low glucose. However, since this is a NET chat support site, I thought I would mention it. They have different blood tests to determine this. If your glucose is often low, particularly in morning (fasting), it’s worth asking your doctor about.
Hello. My wife is a PNET patient at Mayo Rochester - I am her caregiver / advocate. I will follow up and share.
Hey Phoebe, how are you doing? When do you head to Mayo Clinic?
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@colleenyoung any experiences you could share with my new questions? I don’t feel very brave today. My legs are so thin and it’s hard to walk. I’m trying to hold on until next Wednesday. With gratitude, Angela