Ways to control hypoglycemia caused by insulinoma in pancreas?

It is easy to understand your frustration. Try your best to stay the course. We can only do our best to do our part.

Being told to talk to the endocrinologist would get me really frustrated too.

It is frustrating. Anyone used diazoxide for hyperglycemia. It really worked, but dose I was given caused bad side effects, fluid retention caused me to do dialysis

Sorry to hear that it "could" work for you minus the side effects. I personally had fluid drained from my stomach 3 times and had bad side effects. After a few months, the doctor lowered the dosage and most of the side effects slowly disappeared.

I don’t mind you asking at all :). The allergy desensitization involved an admission to ICU with 1:1 monitoring during the procedure. They started an IV and had 5 IV bags in increasing dosages of the octreotide. Each bag of octreotide was infused over 30 minutes and with any allergic reaction, they would treat accordingly. My experience went like this:
Benadryl prior to start
Bag #1: @ about 10 minutes heart rate went from 60 to 168, infusion stopped, Benadryl and Pepcid given and then restarted
Bag # 2: no issues
Bag #3: respiratory issues - Benadryl, pepcid again - at that point the MD contemplated stopping the desensitization but they decided to wait for an hour and then restarted with more Benadryl and other medications to treat allergic reaction. Things get a little fuzzy from here from a memory perspective due to all of the benadryl
Bag #4: no issues
Bag #5: rash, mild chest pain but made it through the entire bag with more Benadryl
(I slept very well that night :))
They next day, with pretreatment, they gave me a subcutaneous dose of octreotide and I was able to tolerate so they discharged me with a prescription to start the short acting injections 3 times a day and after a little over a month, I was able to convert to the monthly injection. I still have to take anti-allergy meds daily and have mild allergic reaction symptoms such as rash/hives but am able to tolerate the medication. The octreotide helps a great deal with my hypoglycemia. Please don’t hesitate to let me know if you have additional questions. Always happy to help.

Thank you. Diazoxide is med that I tried before that I had bad reactions to. We are going to try it again. It raised my blood sugar really high, had to be given insulin,also caused edema, had to do dialysis as result. I'm scared to try it again, but its only thing I've been given that raised it. I'm currently using veraparmil blood pressure med to raise it now. It works little but wears off quickly. Nasal spray Baqsimi has saved me in times it dropped in the 40s on constant glucose monitor. Thank you so much. Happy easter

Best wishes on your journey! I also had an allergic reaction to diazoxide - thankfully not too severe - but did have to stop taking. I was a lot like you when we made the decision to do the desensitization. My hypoglycemia was severe, frequent and disruptive to day to day activities. My oncologist in NC coordinated the desensitization and worked with my endocrinologist at Mayo as well as a specialist at Mayo who developed the desensitization orders. I was very glad I had the procedure done in an ICU. I was the only patient the nurse had during the procedure and she never left my room during the procedure. It is definitely comes with risks so I was very glad the decision was made to do it the way we did. I wish you the very best - I certainly understand the challenges and the desire to have some normalcy back from hypoglycemia. Happy Easter to you as well!

Hello @pontiac,

I see that you are frustrated about not seeing your endocrinologist for another month. If you use the patient portal you can always send a message regarding the problems you are having and your oncologist's suggestion that you make contact.

Most doctors have a nurse who monitors their patient portal and when a patient is having a problem, they will gladly address it prior to the next appointment.

Have you used the patient portal to send messages to your medical team?

Yes I have. It takes couple days for them to answer. I'm in Oklahoma going thru st francis cancer center in tulsa. Sometimes it's frustrating because they keep referring to mayo or MD Anderson, but for me I don't have finances to do that. Everything moves slow, I've had Whipple with everything removed, did not help hypoglycemia, I switched hospitals because I never even saw an oncologist before Whipple surgery, I trusted them, but soon found out there was no plan of care. Switched to Saint Francis while in hospital at Christmas from passing out with hypoglycemia, was just told to eat more prior to that happening. Hopefully things go better, but I'll find out more with petscan. But I'm positive things have progressed. Was at stage iv.

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!