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 | May 6, 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

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@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.

Teresa

REPLY
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

@ahtaylor

Thanks for the information.

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

The spleen helps fight infection. Vaccines foe pneumonia and meningitis are very important. Here is the link to Mayo information on splenectomy:https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066

Allison

REPLY
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

@ahtaylor

Would you share with us something about the "impact of no spleen"?

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

Thanks!Each surgery and recovery is really dependent on the location of the tumor(s). My first surgery was a modified whipple procedure where intestines were rerouted and recovery was impacted by how quickly my intestines started functioning again (not very quickly). My second surgery removed the distal part of my pancreas and my spleen. The impact of no spleen is lifelong. The surgeon is the best person to assist with expectations and recovery. 
Allison

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | 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

@ahtaylor -- good to hear from you. So glad you liked your surgeon and endocrinologist, and that the 11 tumors are gone. I see that you are returning to Mayo in June so they can keep monitoring your condition and help you with any unresolved issues.

You may notice I removed your email and other contact information from your post. We do this to protect your privacy on a public site so that members don't receive any unwanted emails or SPAM from third-party accounts. We recommend members share their contact info using the private message function.

Your willingness to help other members is wonderful.

Would you have any recommendations for the recovery after surgery like yours? Anything that was particularly helpful?

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, Thanks to each of you for the helpful info, I really appreciate your replies. I..." + (show)
@lolorn

Hello,

Thanks to each of you for the helpful info, I really appreciate your replies. I will definitely be researching Dr Liu to see what his experience with insulinomas might be. Allison, I would really like to chat with you and I will be in contact soon - thank you!

Teresa, you had asked how I am limited by my symptoms. Now that these hypos seem to be happening more frequently and can be so random it has had a huge impact on myself and my families lives. I had to stop mountain biking and hiking and basically exercising in general because it seems to bring on the hypos. Two weeks ago I caught this cold and cough that has been going around. I completely lost my appetite for about 4 days and boy was I in trouble. I could not get my BS above 50 for several days. I went to the ER at one point and they had absolutely no clue what was going on. They sent me for a CT (because I was also having some abd pain) but it was not set properly to have a chance at finding an insulinoma. The ER Dr told me that I needed to stop driving. One good thing that came from the ER visit is that I was able to get into the endocrinologist much sooner than my original appt which was 3 mos out :-(. In January my primary "ruled out" an insulinoma after checking my labs. The endocrinologist informed me that all of those labs must be rechecked when my BS is low and that none of the labs that my primary checked told him anything. So I was sent off last week for a 72hr fast in the hospital and those lab results are all pointing to an insulinoma. My husband has had to cancel business trips b/c I couldn't be home alone with our children and or safely drive them to school/events. I will say that after reading as much as I possibly can on insulinomas I do consider myself fortunate. I happen to be an RN and therefore familiar with symptoms of hypoglycemia. When my lips started tingling and I was getting diaphoretic and shaky I instantly thought hypoglycemia. I went and bought a glucometer the next day and waited for the symptoms to come back. The first time that I was symptomatic and was able to actually check my BS, it was 31!!! I couldn't believe it! It was extremely helpful to my Endocrinologist to have a log of all of my hypos for the past 3 mos but it has been extremely frustrating trying to find someone that knows anything about insulinomas or diagnosing me. I have an MRI scheduled for Tuesday...the search is on.

Thanks again for the info.

Lori

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I look forward to talking with you. I am a RN as well and had some similar experiences. Having the knowledge about symptoms is helpful. It is rare and a difficult diagnosis at best. Happy to help in anyway I can. 
Allison

REPLY
lolorn | @lolorn | Mar 31, 2018

Hello,

Thanks to each of you for the helpful info, I really appreciate your replies. I will definitely be researching Dr Liu to see what his experience with insulinomas might be. Allison, I would really like to chat with you and I will be in contact soon - thank you!

Teresa, you had asked how I am limited by my symptoms. Now that these hypos seem to be happening more frequently and can be so random it has had a huge impact on myself and my families lives. I had to stop mountain biking and hiking and basically exercising in general because it seems to bring on the hypos. Two weeks ago I caught this cold and cough that has been going around. I completely lost my appetite for about 4 days and boy was I in trouble. I could not get my BS above 50 for several days. I went to the ER at one point and they had absolutely no clue what was going on. They sent me for a CT (because I was also having some abd pain) but it was not set properly to have a chance at finding an insulinoma. The ER Dr told me that I needed to stop driving. One good thing that came from the ER visit is that I was able to get into the endocrinologist much sooner than my original appt which was 3 mos out :-(. In January my primary "ruled out" an insulinoma after checking my labs. The endocrinologist informed me that all of those labs must be rechecked when my BS is low and that none of the labs that my primary checked told him anything. So I was sent off last week for a 72hr fast in the hospital and those lab results are all pointing to an insulinoma. My husband has had to cancel business trips b/c I couldn't be home alone with our children and or safely drive them to school/events. I will say that after reading as much as I possibly can on insulinomas I do consider myself fortunate. I happen to be an RN and therefore familiar with symptoms of hypoglycemia. When my lips started tingling and I was getting diaphoretic and shaky I instantly thought hypoglycemia. I went and bought a glucometer the next day and waited for the symptoms to come back. The first time that I was symptomatic and was able to actually check my BS, it was 31!!! I couldn't believe it! It was extremely helpful to my Endocrinologist to have a log of all of my hypos for the past 3 mos but it has been extremely frustrating trying to find someone that knows anything about insulinomas or diagnosing me. I have an MRI scheduled for Tuesday...the search is on.

Thanks again for the info.

Lori

REPLY
1 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

Thanks. I am doing well. I will be coming back to Mayo in June for follow up. My issues are not entirely resolved so they are continuing to monitor for recurrence. I am always happy to help someone else going through the process!

Allison

REPLY
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
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