NET - Insulinoma

Posted by ahtaylor @ahtaylor, Jan 21, 2017

Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | Jan 22, 2017

Hi @ahtaylor and welcome to the NETs group. I'm glad you joined us here as well as the Diabetes/Endocrine group.
If you read this discussion thread -- Carcinoid http://mayocl.in/2j1tL0M --, you'll get to know pretty much everyone participating in the group. I'm specifically tagging @gaylejean on this conversation as she may be able to share a bit more about what you can expect at Mayo Clinic, although I don't know if she had insulinoma testing. I'm also bringing @ridgerunner in as she manages hypoglycemia.

AHTaylor, you mention "I have walked down this path once already." What did you mean by that?