Connect
Comment receiving replies
I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed to fast overnight for my blood sugar to reach 48. I live in a small community in Wisconsin. My endocrinologist has never treated someone with insulinoma. I've been managing my symptoms for a couple years with food. She has advised I start diazoxide. We've done a CT, RUQ US and I'm having a MRI to look at my pituitary today. So far she can't find the tumor. My questions are:
1. Have you taken diazoxide? Any comments on that medication?
2. Has anyone had a tumor they couldn't find with imaging? What did they do?
3. Overall thoughts about Mayo's program. Anyone you would suggest I see?
4. How did your insurance cover being seen at Mayo, presumable out of network?
Thanks!
Replies to "I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed..."
@amya
You definitely need to be seen by a NET specialist and as Tom Wilson mentioned, Mayo is probably the closest place to you. All of the tests that you have had already, might not show a NET, you might need a 68Ga DOTATATE Positron Emission Tomography (PET) it picks up NETs but let the Mayo folks figure that out for you.
Here is a discussion about that, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Thank you @tomewilson for offering to help. Very kind of you!
Hi Amya,
Very sorry to hear you are insulinoma patient. I was insulinoma patient last year and had surgery last year at Mayo. In addition to do imaging work, Ca stimulation test could be performed as well. Via the test, will be able to determine tumor location, e.g tail or head part of pancreas. I attached a paper published by Mayo team, could give you some idea about the test.
Good luck and hope everything goes smoothly!
In addition to the information I sent yesterday and in reference to your question about not being able to locate the tumor:
I was still symptomatic after my first surgery and 18 months later the hospital where I was receiving treatment could not find additional tumors. I ended up at Mayo for a second opinion and through several testing methods Mayo was able to locate and remove 9 additional tumors. There are incredible resources and technology available for patients with insulinomas at Mayo!
Connect
I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has been seen @ Mayo 3 1/2 years. She’s has 2 surgeries, regular labs, scans and office visits. We are a 4 hour drive.
All will agree results are better when seen at a high volume speciality center like Mayo. This is based on evidence.
If there are no recognized NET specialists ‘in- network’, then you should file a ‘grievance’ with your insurer. I’m happy to help you with the language and letter. I’ve been through this several times.