What’s next: Seeking advice on how to navigate diagnosis appointments?

Hello. I can’t add value to your insulin growth factor question, but is your glucose low or are you having hypoglycemic episodes ?

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!

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.

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.

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!

@rickclem thanks- yes, I will definitely ask- I tried a couple times to let Mayo know about my recent labs and forewarn them that I may need GI/NET evaluation as it originally seemed like a pituitary issue and Cushing but I’ve muscle wasting in my legs and arms. They said wait for internal medicine- I just pray it’s not a long term around time. It’s harder to get out of bed in the morning. I have a young son and I am calmer now and more patient but I every day thst goes by without a diagnosis is one more day that things can get worse. Only 5 months ago I was a go getting mom taking my son on play dates and keeping everyone on schedule and now it’s all fallen apart. I just hope and try to have faith that things can get better, but the reality is still that I need action on my case. So I have to give my battle to God and faith in the timing-but it’s a struggle.

Hi Teresa! I am very excited to see this CFF Luncheon with the Experts! Dr Thor is one of the top NET Specialists in the country! I encourage everyone to to attend!