Ways to control hypoglycemia caused by insulinoma in pancreas?

I wish I had more words to help. I wish words would help fix what you have going on. I hope you have found some comfort on this site and with others who have similar stories. None of us have the same story but we all have a story. I appreciate you having the courage to share your frustrations and experience openly. I hope you will stay in touch and keep posting. Hope you find some answers with your PET. Hang in there and take care!

Thank you for reply. I tried corn starch with milk. Unfortunately for me it did nothing to raise my sugar levels. I haven't tried it since I got constant glucose monitor. Maybe I will again. Any kind of exertion, eating and laying down all cause my glucose to drop

I have been dealing with hypoglycemia since my diagnosis in July.Currently under chemo infusions,I do not qualify for surgery at the moment. Quick fixes are always orange juice,tablespoon of peanut butter or some gingerale. But sometimes in afternoon I have tea with two scoops of corn starch! At night before bed I have two to three scoops of corn starch in tea,although they would prefer in something cold like milk. The I eat a bar called an extend bar(I like the berry and yogurt) not so heavy at night but they have other flavors,you can buy on amaazon. Combination seems to get e thru the night so I can sleep. Morning I take medications with orange juice so I dont have to eat right away...pushes off the need to stuff myself with food!
Hope this helps!

I can truly empathize as I have been living the same nightmare since last November. I have to consume cornstarch as a bedtime snack to keep my bs up during the night as well. My Selective Arterial Calcium Stimulation Test with Hepatic Venous Sampling showed consistent increases in Insulin in area of pancreas that is perfused by the Splenic Artery, but MD's do not think its increasing trends are not quite high enough for NIPHS or an Insulinoma. They are wanting me to trial Mounjaro to see if I have a dysregulation between glucose intake, storage and release and Insulin production and release. It was also mentioned that we may be just catching the issue earlier in the disease process and said if Mounjaro is ineffective, I may need to repeat the Calcium Stim Test down the road. Anyone else with a similar experience?

The hardest part was finding a facility (in the south) and an Interventional Radiologist who performs enough cases to remain competent in the procedure. The next most challenging aspect was the NPO status. I was allowed to have Clear liquids up to 2 hrs. prior to arrival for blood glucose rescue if needed. Labs drawn and Iv started prior to case. Once in Procedure Room, I was sedated, IV conscious sedation so no intubation. They accessed my Right Femoral vein and artery (Right groin area). Imaging was then used to get to the vessels that perfuse the pancreas. At each artery, they injected Calcium and then true multiple timed blood draws on he venous side looking for increasing trends in Insulin levels. When they injected the calcium, I could feel it going through my upper abdomen, It was a weird sensation. During the procedure, LOTS of blood samples are taken in the range of 70-80. Once completed, an Angio-seal with dressing was used and had to lie flat for 2 hrs. before discharge. Once we got back to the hotel, I went straight to the bathroom to find that I was bleeding from the site with a saturated dressing. I immediately grabbed a washcloth and applied pressure and we immediately went to the ED. Thankfully it was my venous access that was oozing, but had pretty much resolved upon arrival to ED. The Int Rad Team came to evaluate me and re-dress my site and we went back to hotel. That was the only hiccup I encountered. I am on high dose steroids daily so my bruising in the area was significant, but no adverse complications. Some of the labs drawn for test analysis were send-outs so waiting almost 3 weeks for the results was a bit challenging. Best wishes for a successful procedure, answers and a reasonable plan of care.

Diazoxide, commonly known as proglycem has been a life saver. It controls my blood sugars. Dosages may have to increase as your condition changes. But it works so well, I can sleep through night, walk during day. Before if I laid flat at night my blood sugar would go from 120 to 30 in 30 minutes to hour. Try it. I take 1.25ml 3 times a day. I could probably take less. But it is wonderful to not have to constantly be looking at my libre 3 worrying.

The hardest part was finding a facility (in the south) and an Interventional Radiologist who performs enough cases to remain competent in the procedure. The next most challenging aspect was the NPO status. I was allowed to have Clear liquids up to 2 hrs. prior to arrival for blood glucose rescue if needed. Labs drawn and Iv started prior to case. Once in Procedure Room, I was sedated, IV conscious sedation so no intubation. They accessed my Right Femoral vein and artery (Right groin area). Imaging was then used to get to the vessels that perfuse the pancreas. At each artery, they injected Calcium and then true multiple timed blood draws on he venous side looking for increasing trends in Insulin levels. When they injected the calcium, I could feel it going through my upper abdomen, It was a weird sensation. During the procedure, LOTS of blood samples are taken in the range of 70-80. Once completed, an Angio-seal with dressing was used and had to lie flat for 2 hrs. before discharge. Once we got back to the hotel, I went straight to the bathroom to find that I was bleeding from the site with a saturated dressing. I immediately grabbed a washcloth and applied pressure and we immediately went to the ED. Thankfully it was my venous access that was oozing, but had pretty much resolved upon arrival to ED. The Int Rad Team came to evaluate me and re-dress my site and we went back to hotel. That was the only hiccup I encountered. I am on high dose steroids daily so my bruising in the area was significant, but no adverse complications. Some of the labs drawn for test analysis were send-outs so waiting almost 3 weeks for the results was a bit challenging. Best wishes for a successful procedure, answers and a reasonable plan of care.

Thank you so much for the detailed response. I don’t think I would be able to remember all the details. I don’t know who my interventional radiologist will be. The surgeon I was referred to is sending me to him as he is trying to determine if I may have NIPHS requiring surgery or if I might be able to take my tumor out via radio frequency ablation. Where did you go to for this procedure. After reading your experience, I am concerned about the radiologist’s experience. Don’t know who it will be yet. I live in San Antonio, TX.

Living in Texas, MD Anderson is a great facility. I live in tulsa Oklahoma. I've also had ablation done on my liver, it's a good noninvasive option. Neuroendocrine tumors are difficult. Weather they are well diffentiated or not, whether they are active ie..causing symptoms in endocrine system. MD Anderson is a great facility. They have done peer to peer reviews with my drs here.