Ways to control hypoglycemia caused by insulinoma in pancreas?

Beth where did you go for the procedure and who was your radiologist? Thanks so much.

Corn starch will help stabilize your suger

Diazoxide is only med prescribed to help hypoglycemia caused by endocrine tumors. If cornstarch worked they would have diabetics use it in low circumstances. The issue with endocrine tumors is insulin is being dumped by pancreas all the time even when not eating into system. Consequently liver never releases glycogen except when you eat to raise blood sugar. Because normally insulin release tells liver blood sugar is high don't release any glycogen to raise it.

I didn’t have a whipped but have a pancreatic tumor and numerous liver tumors. I also have no feelings of hunger so would often forget to eat . My solution was nutritional drinks that I drink on a schedule. I usually try to eat something with it . My weight has maintained and I no longer deal with the sudden feeling of low blood sugar. Hope this helps and that you find a solution that works for you !

I have stage 4 NET pancreatitis to liver cancer. Also had trouble with sugar levels dropping dramatically. The doctors at Dane Farber in Boston recommended Corn Starch and it helped.
Not claiming that Corn Starch is the cure, but it helped to stabilize my sugars so it could be managed until liver tumors could be reduced.
It may not work for everyone, it definitely doesn’t work if you don’t try.
I mixed it with pudding and it was tasteless.

For me my sugar would drop in teens, constant glucose monitor are a must for safety. My levels get so low I pass out . Sleeping was impossible. Dropping low enough to pass out is horrible feeling. Food did not impact mine. Every neuroendocrine tumor patient is different. But if you can't sleep because of it the diazoxide is a life saver. It's given me back some quality of life. I still do not drive after totalling my truck a year ago. My one piece of advice do not wait, be your own advocate and push for treatment. There are plenty of treatment options. Endocrinologist are experts with functioning neuroendocrine tumors that are disrupting the endocrine system, regular MDs are not qualified.

They tried the diazoxide on my husband but he had a bad reaction so ended up on once monthly octreotide along with his other chemo treatments. You are right, everyone has a different reaction to treatment and because of the rarity of metastatic insulinoma it is important to find a good oncology/endrocrinology team. Wishing you the best.

My husband is currently undergoing PRRT treatment. Wondering if any of you have had this treatment and your experiences with this?

I'm currently doing the lutathera treatment that includes sandostatin shot the day after. I've done 2 so far with 2 left. Only side effects I've had is really tired after. Now the sandostatin shots I've had low blood sugar events a couple days after. Currently now my blood sugar has changed to being high, whether that's a response to treatment or caused by higher dose of diazoxide I'm currently doing is unclear. Be prepared for full day the day you receive the lutathera. Hope this helps.

Hello @bnjncrew

I hope that your husband is doing well with his PRRT treatments. We have a few discussions on this topic which you might find helpful. Here are the links

--Interested in Hearing Other Peoples' Experiences with PRRT.
https://connect.mayoclinic.org/discussion/prrt-treatment/
--Questions about Blood Test Results After PRRT Treatment
https://connect.mayoclinic.org/discussion/post-prrt-blood-tests/

Please feel free to read the posts in these discussions and ask questions of the members. Many have had good experiences with PRRT and will be happy to share with you.

When was your husband's first treatment? How is he feeling? Any side-effects that were unexpected?