NET - Insulinoma
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.
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@ahtaylor That kind of drop in blood sugar must have been very frightening.
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 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)?
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 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
Thanks for asking! I am coming back to Mayo the week of 3/13. I will be having more testing that week to better localize the tumors and then surgery at the end of the week. Take care.
@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa
Thank you for the post. We have just arrived back in Rochester. I have testing for the first part of this week, surgery consult on Thursday and surgery is scheduled for Friday 3/17. Thanks for the thoughts and prayers.
@ahtaylor Thanks for the update, Allison. Keep us posted. Teresa
Best of luck to you!