NET - Insulinoma

@ahtaylor Hi, its been a while since we last heard from you. I am under the impression that you will be having surgery in the near future. Has a surgery date been set yet? Keep in touch with us as you are able. Teresa

Yes they are in the pancreas unless they metastasize but are generally benign and don't metastasize. The tumors themselves produce insulin and cause the hypoglycemia. Normal insulin production is regulated in a feedback loop so it does not overproduce.

@ahtaylor I'm sorry to hear of the two new insulinomas, even though you are probably not surprised given the symptoms. Are Illinoisans always located in the pancreas (and is that why they affect blood sugar)?

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

@ahtaylor That kind of drop in blood sugar must have been very frightening.

My 72 fasts have been the longest. I have done 2 of them. The first lasted 38 hours before my sugar dropped. But then I had complications with blood sugar stability and spent 2 more days in the hospital. The second one lasted 44 hours.

@ahtaylor So, it sounds as if you might spend at least a day or more at the lab having blood drawn and eating. What has been your longest time for this kind of test? Teresa

A 72 hour fast, fortunately does not always last 72 hours. You start fasting and fast up until blood sugars to drop to less than 50. Once they do, they draw labs and can use that information to determine if an insulinoma is likely. The test can last up to 72 hours and is stopped at that point if sugar does not drop. Sugars are checked hourly. A mixed meal test starts with fasting labs and then you eat and take sugars and other labs every 30 min. Thanks.

@ahtaylor Thank you for the answers, Allison. While most of us with NETs feel frustrated with how difficult it is to find our tumors, this type of NET provides a whole new meaning to that experience. I take it that a 72 hour fast, means no food for 72 hours and then they add some meals and test and re-test your sugar levels? I'm copying this to the rest of our group for their information and feedback, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes

@hopeful33250, they were found first through a 72 hour fast (which is one of the more common tests to identify that there is one) and then they were visualized by endoscopic ultrasound. They are typically very small and hard to locate and to even determine if they are present. My testing at Mayo this week is to determine if there  is another one. I have had  72 hour fast, mixed meal test, CT, lots of lab work and going soon for a Calcium Stimulation test. No answers yet but hopefully soon. Thanks for the questions.