NET - Insulinoma

Hi, I went to Mayo in Sept. of 2018, for a thyroid nodule. While I was there I told the internist I was having such weight gain because I had to eat or I thought I would pass out. Thank God, he sent me to a specialist in metabolism, she is an Endocrinologist. She listen to my story without judgement and ask all the right questions. She gave me a card for lab work if I started to feel one of my episodes ( thats what I named them ) now remember I have now been fasting for a thyroid biopsy ( our local hospital back home did one and had too much blood in the one they did so they wanted me to see a surgeon ) while I was on the table to get the biopsy one of the nurses told me that when I was done to go back to E 18 …I was a bit confused as I was fasting now for about 18 hours ( hard to do with an insulinoma ) when I walked back into her office …the first thing she ask me was how I felt. She ask me to sit down, then she told me that after our earlier conversation she called a fellow and discussed with him what she thought…he agreed with her that it sounded like insulinoma. But now I needed to either stay at Mayo or come back for the 72 hour test. I told he r I would come back in a couple weeks. When I went back the 72 hour test was to start in the Mayo Clinic through the lab in the endocrinology department….Blood drawn every hour, until noon then I would move to become an in patient at St. Mary’s. I was done just before noon , an never made it to the hospital. From there CT Scan & ESU were done, the tumor unfortunately was at the head about the size of a grape. It was full open surgery, 10 day stay, and some issues post op. All in all I feel I was well taken care of. I never heard the work insulinoma and really wasn’t sure where my pancreas was. I looked it up and knew from alll my symptoms that she was onto something. To me it was all a blessing, a gift from God.

Thank you soooo much! Great information!

HI Steph,
Have you had time to reach out to Concierge Services yet? Most of the hotels in the area provide transportation to and from the Clinic. It's convenient because you get dropped off at the main entrance you can catch the shuttle back later when your appointments are over. We have several good hotels that opened just over a month ago that are offering so great rates.

thank you so much it’s very reassuring!

Kapple, the benefit of Mayo Clinic is that physician teams work together across all Mayo Clinic locations. No matter which location you choose, you have access to expertise in treating insulinoma of multiple physicians. As @ahtaylor points out, her endocrinologist at Mayo Rochester is a leader in insulinomas. I encourage you to call Mayo AZ and Rochester to ask about insulinomas to help inform your decision. Here's the contact information for all 3 campuses: http://mayocl.in/1mtmR63

My experience has only been at the Rochester, MN Mayo Clinic. The Endocrinologist I have there is well versed in insulinomas and has done much research in the field. I wish I could help with the question about Phoenix Mayo Clinic. I can support the fact that insulinomas are rare. Also, if surgery is required, having a surgeon that is familiar or that specializes in endocrine/insulinomas is very helpful as it is not a simple surgery. I wish you the best in your journey and wish I had more helpful information. Take care.

I would like to know if anyone has had success in treating insulinoma at the Phoenix Mayo clinic where I will be going for my appointment? The endocrinology department said their doctors treat all areas however insulinoma is so rare I worried I’ll just be wasting my time and have to Continue the search for someone who can treat it

This is a stellar post @ahtaylor! That’s information one just can’t get anywhere else.

Hi Steph, Do you know about the free Concierge Services at Mayo Clinic?

You can get your travel and accommodation questions answered by someone at the free Concierge Services at Mayo Clinic. The staff at the concierge desk can help with hotel/lodging recommendations, according to your wishes of proximity, price and space requirements. Here is how you can contact them:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

Let me connect you with @lmindela

My family stayed at Kahler directly connected. Not too bad. Hilton has completed HGI. Nice. Can find on web with search.