1. < Neuroendocrine Tumors (NETs)

NET - Insulinoma

Posted by ahtaylor @ahtaylor, Jan 21, 2017

Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

Hello @ahtaylor

It is so good to hear from you. As you had not posted after your surgery at Mayo last year, I've wondered how you are doing. I'm glad to hear that your surgery at Mayo was successful and you had such good results and were happy with your medical team.

I appreciate your sharing with @lolorn. I know she will appreciate your personal recommendation.

I look forward to hearing from you again.Once again I'm so pleased that all is going so well for you.

Teresa

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

Lolorn,Good to hear from you. I have had multiple insulinomas. I have had two surgeries to to to remove a total of 11 tumors. My first surgery was in NC and my second was at Mayo in Rochester. I have a great endocrinologist there that continues to follow me. I had a great surgeon as well. I would be happy to share my experiences with you either by phone or email. I highly recommend Mayo. You have my email and you may private message me on this site. Best wishes. Allison 

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018

Hello @debf

Yes, I've heard good things about him - I believe that he has NETs himself and recently had surgery. Here is a link to a website about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/. I do not know for sure if he deals with Insulinoma though. It is important to seek out specialists for the specific type of NETs. Mayo is always a good choice.

Teresa

REPLY
debf | @debf | Mar 31, 2018

Has anyone mentioned Dr. Eric Liu, Rocky Mountain Cancer Center to you? He is an expert in NETs and is in Denver.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018

Hello @lolorn and welcome to Mayo Connect

While I am sorry to hear of your recent diagnosis of insulinoma I am sure that you must be relieved to have a diagnosis that you can now work with. I am pleased that you are looking for a surgeon who is an expert in this matter. It is important when dealing with any type of NETs that you find the most experienced, accomplished surgeon that is available. Mayo Clinic would be an excellent choice. Here is some additional information about insulinoma from the NIH website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087741/

Since you live in Colorado you might also talk with Eric Liu, MD (Surgical Oncology) at The Rocky Mountain Cancer Centers. I am not sure if he treats insulinoma, but I've heard good things about him from other NET patients (who do not have insulinoma) and his office is in Denver. Here is a website with more information about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/.

With blood sugar numbers so low, I can imagine how difficult it must be work or carry on a somewhat normal life. How are you limited by your symptoms?

I look forward to hearing from you again as you work through this difficult diagnosis and seek treatment.

Teresa

REPLY
lolorn | @lolorn | Mar 31, 2018

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

REPLY
10 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 7, 2018
In reply to @nancymcegg "Hi! My name is Nancy and I live in Cape Coral, Florida. I have been to..." + (show)
@nancymcegg

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

Jump to this post

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.

Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2018
In reply to @nancymcegg "Hi! My name is Nancy and I live in Cape Coral, Florida. I have been to..." + (show)
@nancymcegg

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

Jump to this post

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.

Teresa

REPLY
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?

Nancy

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 30, 2017

Hi @ahtaylor,
How are you doing? Like Teresa, I hope that your recovery post surgery is going well. We look forward to hearing from you when you are able.

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