NET - Insulinoma

Hello,
I have hypoglycemia and blood chemistry that is indicative of an insulinoma. My most recent blood work showed a fasting glucose of 52 mg/dL, C-Peptide of 2.6 ng/mL, Proinsulin of 112.3 pmol/L, and insulin of 11 ulU/mL. I have fairly frequent bouts of hypoglycemia and my glucose levels sometimes drop into the upper 30's (I have a CGM). I am seeing an Endocrinologist, but she doesn't have any experience treating insulinoma's. I did have a CT scan, but it did not indicate a tumor. The endocrinologist is suggesting I find a surgeon and have them try to locate the tumor during surgery. This makes me a bit nervous. I would rather have the tumor located prior to going into surgery. Should I request endoscopic ultrasound to try to locate it? I have also read about calcium stimulation test that is apparently very successful at finding the tumor.
Thanks!

Have an insulinoma (diagnosed 12/23) and have had many types of treatment including pancreatic surgery in 4/25. It had already spread to the liver so is not really curable. Taking cabometyx now which has some effects, dizziness and changes to how food tastes among others.
Mine was found very quickly by CT scan and confirmed by liver biopsy.

Hello @bmkelldog and welcome to the NETs support group on Mayo Connect. I can certainly understand your hesitancy to undergo surgery before understanding where a tumor might be located. I would strongly recommend that you see a NET specialist. A second opinion with a NET specialist might be helpful at this time. If you would like to seek help from the Mayo Clinic, contact one of the appointment offices using this link, http://mayocl.in/1mtmR63. Mayo has three locations in Minnesota, Florida, and Arizona.

I would also like to invite @ahtaylor to post with you regarding her experiences with Insulimona. She has had the calcium stimulation test as well as surgeries.

Hello @bmkelldog! I completely understand your frustration! Diagnosing and then locating insulinomas, due to their small size is quite the challenging journey. In my experience imaging does not always reveal the location of insulinomas. The calcium stimulation test is a great test for locating the region of the pancreas/liver and then imaging is more useful in locating the tumors. Once the tumors are located, either general or specific location, then surgical and/or treatment options can be discussed. Collectively, I have had 2 surgeries (modified whipple and distal pancreatectomy and splenectomy), multiple calcium stimulation tests and a hepatic artery embolization. 11 tumors have been removed or ablated. I still have tiny tumors in the liver and pancreas that are not able to be visualized by imaging. I have had great care and follow up with the endocrinologist at Mayo. I am happy to answer any other questions you may have. Best wishes!

Thank you ahtaylor! Very informative regarding insulinoma’s. I didn’t know any of this since mine are regular NET’s that sometimes secrete pancreatic polypeptide. So glad you are doing well! Best wishes

Looking for support. Newly diagnosed with Nesdioblastosis and meet my specialist in two weeks at Mayo in MN. I have tried acarbose, it’s not working. I’m not a candidate for the digoxin with a heart pacemaker. How long will all of the testing take? Days? Weeks? Do we stay at Mayo the whole time? We are 4 hours from Rochester where the clinic is. What does the Mayo protocol look like for this? Our lives have completely turned upside down since I fainted a little over two weeks ago and I have many episodes all day long. My husband and I both had to go on leave from our jobs. 911 has been here so many times I have lost count. My face, lips and tongue are constantly tingling and numb. I’m losing hope we’re going to get to the other side of this in one piece.

@danelle9192 in my experience, the first round of testing took a week. Mayo coordinates the appointments and we do stay in Rochester for the week. Every case is different so difficult to say what your schedule may be. The Mayo Clinic app is very beneficial. I am happy to help in anyway I can. Best wishes!

@danelle9192, I hope you saw the helpful post from @ahtaylor. If I've calculated correctly, your appointment at Mayo Clinic in Rochester is coming up soon. As you prepare for your time in Rochester, you may find some of the discussions here useful:

- Visiting Mayo Clinic Support Group https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

As @ahtaylor. mentioned, testing can take up to a week. Many of the hotels offer patient rates and are flexible if you need to shorten or lengthen your stay. Mayo Clinic free Concierge Services can also help answer questions regarding accomodation, transportation, services and even help with downloading the patient portal.
Concierge services at Mayo Clinic in Rochester, Minnesota
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
Have you signed up for Mayo's patient portal? Are you seeing your appointments start to appear?

I had my first appointment with Dr. Shah at Mayo last week. I was able to get to a local lab on Saturday and get the labs they needed. Glucose : 43, Insulin: 24.2, c-peptide 6.6. The test with the weird long name was .3 and needed to be under 2.6. Still waiting on Proinsulin, which I anticipate would be elevated, and sulfa screen which will be negative. I don’t know if I will still need to do the MMT and 72 hour fast. They are in 2 weeks at Mayo. I get sicker by the day. I’m losing my eyesight too. Just trying to keep the faith.

So glad to hear you are getting started with testing! It is no doubt a challenging journey! Absolutely keep the faith-you are in great hands!