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Oct 3, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

Do you know of a specific doctor I should make an appointment with at the Mayo in Florida?

Oct 2, 2018 · NET - Insulinoma in Neuroendocrine Tumors (NETs)

Hi! My local doctor's feel that I have an insulinoma but the endocrinologist at the Cleveland Clinic in Florida thinks that I might be suffering from dumping syndrome. I had a Nissen fundoplication 5 years ago due to severe gerd but my hypoglycemia didn't start until 3 years later. I have had every scan you can think of and they can't find an insulinoma. I have been put on medication to keep food in my stomach longer but it hasn't helped. I had a gastric emptying study done and it was in the higher range of normal. I am so tired of feeling terrible all the time and I don't know what to do next.

Feb 6, 2018 · Help and guidance ~ insulinoma in Neuroendocrine Tumors (NETs)

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?

Nancy