Help and guidance ~ insulinoma

Posted by nancymcegg @nancymcegg, Feb 6, 2018

Hi! My name is Nancy and I live in Cape Coral, Florida. I have been to multiple doctor’s and they all have come to the conclusion that I have an insulinoma. After I read up about insulinoma’s I realized that I have all of the symptoms and have had them for a while. My endocrinologist admitted me to the local hospital for the 72 hour fasting glucose test and the hospital did it all wrong!! The doctors at the hospital accused me of injecting myself with insulin to cause my symptoms and the doctor ran 3 different blood tests looking for every type of artificial insulin to prove his theory. When they all came back negative he told me that insulinomas are extremely rare and there was no way I could have one. I never saw him again. He gave orders for the nurse to do all of the blood work at 36 hrs when my glucose level was at 60 instead of waiting the full 72. After the nurse took the blood work she gave me the glucagon . My first glucose check at 5 minutes was in the 30s so the nurse freaked out and gave me second dose. She checked my glucose again 5 minutes after that and it was still not coming up so she gave me a 3rd dose. At that point a felt like I was going to have a heart attack because my heart began pounding and I became nauseous. My next 5 minute glucose test was 280 so the nurse decided to leave me alone and told me to check my own glucose every 15 minutes and if it dropped below 90 I needed to drink orange juice and/or eat something. I later found out that the correct blood test weren’t even ordered and then the nurse giving me 3 doses of glucagon invalidated everything. The doctor refused to come see me to answer my questions and had the nurse discharge me. To make a long story short I went to see a gastroenterologist and he did an endoscopic ultrasound yesterday but he couldn’t find the tumor. This is going to sound strange but after the test it was like my pancreas went nuts because I no matter what I ate I couldn’t get my glucose above 68. Today was better but I still couldn’t get my glucose above 84. My insurance won’t approve the PET scan that my doctor ordered so now he is trying to get some much less expensive scan approved but he doubts it will help locate the tumor. I don’t know where to go or who to turn to but I can’t go on feeling as bad as I feel. I can’t stand eating every hour or two and nothing tastes good anymore.

Does anyone have any suggestions?


Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Hello, @nancymcegg and welcome to Mayo Connect. I’m pleased that you posted this question. There has been one other member who has posted about insulinoma and that member is @ahtaylor. If you click on @ahtaylor you can read all of her posts and see some of the difficulties she experienced as well.

It does sound like you need to find a doctor who some experience in this area. There is a Mayo Clinic in Florida. Have you considered a second opinion by a Mayo specialist?

I look forward to hearing from you again.



Hello @nancymcegg

It has been a while since you first posted and I was thinking about you. How are you doing? Were you able to get a second opinion or do you have results of the scan that your doctor ordered?

I look forward to hearing from you and hear how you are progressing in getting treatment for this rare disorder.



@nancymcegg Hello Nancy,

Just wanted to drop you a note to check in and see how you are doing. I hope that you have found some answers to your diagnosis and have a treatment plan in place.

I would enjoy hearing from you again and hear how you are coming along.


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