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) group.

Good morning and welcome to the group! What information are you looking for on insulinomas? I am happy to help in any way I can. I was first diagnosed with insulinomas in 2015 when I had 2 removed through a modified Whipple procedure in NC. I continued to be hypoglycemic and was referred to a great physician at Mayo Clinic. Through a series of tests/procedures, Mayo discovered and removed or ablated 9 additional tumors in 2017. I continue to have hypoglycemia and through testing know there are 1 or 2 more tiny tumors and surgery is not an option at this time. I had a procedure back in March of this year to control the hypoglycemia. Please share any questions and best wishes in your journey. Mayo is a great place to be a patient with insulinomas!

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Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

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@jadedprincess

Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

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Hi @jadedprincess,

You mentioned having "high platelets" due to not having a spleen. Does this cause any particular symptoms?

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I do not have any symptoms, but I have had a couple of small blood clots. They present as a very painful, red, hot bump. I work in healthcare so I know to go in right away to be seen and treated. And of course, my labs usually scare the pudding out of any new doctor until I give them my history. ­čÖé

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