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ahtaylor
@ahtaylor

Posts: 23
Joined: Jan 07, 2017

NET - Insulinoma

Posted by @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.

REPLY

Hi @ahtaylor and welcome to the NETs group. I’m glad you joined us here as well as the Diabetes/Endocrine group.
If you read this discussion thread — Carcinoid http://mayocl.in/2j1tL0M –, you’ll get to know pretty much everyone participating in the group. I’m specifically tagging @gaylejean on this conversation as she may be able to share a bit more about what you can expect at Mayo Clinic, although I don’t know if she had insulinoma testing. I’m also bringing @ridgerunner in as she manages hypoglycemia.

AHTaylor, you mention “I have walked down this path once already.” What did you mean by that?

Thanks @colleenyoung for the information. Thanks too for the question about why I stated I had walked down this path already. I have been through extensive testing and diagnosis of 2 insulinomas. I have also had surgery for the insulinomas, which involved 10 hour surgery, drains, full abdominal incision and an 11 day hospital stay. About 3 months after surgery, I started to have similar symptoms. I have had worsening hypoglycemia events over the last 1.5 years and now face a repeat of the series of testing as the thought is the tumor is recurring or there is a new tumor. My first round was not with the Mayo Clinic so I am new to the Mayo clinic but not new to the diagnosis. Thanks, again for your reply and information.

Hello @ahtaylor: It is always good to have a new member, welcome to the NET group! I see that you have insulinoma. Is this a type of NET? Until you posted about it, I was not familiar with the term. All of us in the NET group can certainly relate to the fact that a rare tumor that is often misdiagnosed is very frustrating. Also, the Whipple procedure is often used for treatment of NETs. Please let us know how your Mayo visit goes. I’ve heard wonderful comments from everyone who has been to Mayo and I’m looking forward to hearing about your experience as well. If you would, please share what your original symptoms were with insulinoma. Have you always had the hypoglycemia symptoms or were there other symptoms as well? Best wishes to you as you seek answers. All of us in the new NET group look forward to getting to know you better! To all the members of NET @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, let’s all welcome @ahtaylor to our group and support and encourage her! Teresa

@hopeful33250

Hello @ahtaylor: It is always good to have a new member, welcome to the NET group! I see that you have insulinoma. Is this a type of NET? Until you posted about it, I was not familiar with the term. All of us in the NET group can certainly relate to the fact that a rare tumor that is often misdiagnosed is very frustrating. Also, the Whipple procedure is often used for treatment of NETs. Please let us know how your Mayo visit goes. I’ve heard wonderful comments from everyone who has been to Mayo and I’m looking forward to hearing about your experience as well. If you would, please share what your original symptoms were with insulinoma. Have you always had the hypoglycemia symptoms or were there other symptoms as well? Best wishes to you as you seek answers. All of us in the new NET group look forward to getting to know you better! To all the members of NET @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, let’s all welcome @ahtaylor to our group and support and encourage her! Teresa

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Thanks for the response. Yes, insulinomas are Neuroendocrine tumors. They produce insulin above normal levels and lead to hypoglycemia. The only symptoms they cause are hypoglycemia. I first noticed episodes back in 2014 and the episodes increased in frequency and severity until diagnosed and removed in 2015. The recurrence of symptoms started about 3 months after surgery. They are very difficult to locate. Mayo has been great. Very thorough and very efficient.  They have done multiple tests in a week trying to get the best answer and plan. Very impressive!  Thanks again for the response.

@hopeful33250

Hello @ahtaylor: It is always good to have a new member, welcome to the NET group! I see that you have insulinoma. Is this a type of NET? Until you posted about it, I was not familiar with the term. All of us in the NET group can certainly relate to the fact that a rare tumor that is often misdiagnosed is very frustrating. Also, the Whipple procedure is often used for treatment of NETs. Please let us know how your Mayo visit goes. I’ve heard wonderful comments from everyone who has been to Mayo and I’m looking forward to hearing about your experience as well. If you would, please share what your original symptoms were with insulinoma. Have you always had the hypoglycemia symptoms or were there other symptoms as well? Best wishes to you as you seek answers. All of us in the new NET group look forward to getting to know you better! To all the members of NET @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, let’s all welcome @ahtaylor to our group and support and encourage her! Teresa

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@ahtaylor Thanks for your very thorough explanation, Allison. Were the NETs found using the Octreoscan or Gallium 68 or perhaps through an endoscopy? This is very interesting, I thought I knew all about NETs but my knowledge base is increasing. Thanks for the great info. I’m glad to hear that you have been pleased with your Mayo experience. When do you expect to have the results of the tests? Please keep us posted. Teresa

@hopeful33250

Hello @ahtaylor: It is always good to have a new member, welcome to the NET group! I see that you have insulinoma. Is this a type of NET? Until you posted about it, I was not familiar with the term. All of us in the NET group can certainly relate to the fact that a rare tumor that is often misdiagnosed is very frustrating. Also, the Whipple procedure is often used for treatment of NETs. Please let us know how your Mayo visit goes. I’ve heard wonderful comments from everyone who has been to Mayo and I’m looking forward to hearing about your experience as well. If you would, please share what your original symptoms were with insulinoma. Have you always had the hypoglycemia symptoms or were there other symptoms as well? Best wishes to you as you seek answers. All of us in the new NET group look forward to getting to know you better! To all the members of NET @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, let’s all welcome @ahtaylor to our group and support and encourage her! Teresa

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@hopeful33250, they were found first through a 72 hour fast (which is one of the more common tests to identify that there is one) and then they were visualized by endoscopic ultrasound. They are typically very small and hard to locate and to even determine if they are present. My testing at Mayo this week is to determine if there  is another one. I have had  72 hour fast, mixed meal test, CT, lots of lab work and going soon for a Calcium Stimulation test. No answers yet but hopefully soon. Thanks for the questions.

@ahtaylor Thank you for the answers, Allison. While most of us with NETs feel frustrated with how difficult it is to find our tumors, this type of NET provides a whole new meaning to that experience. I take it that a 72 hour fast, means no food for 72 hours and then they add some meals and test and re-test your sugar levels? I’m copying this to the rest of our group for their information and feedback, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes

@hopeful33250

@ahtaylor Thank you for the answers, Allison. While most of us with NETs feel frustrated with how difficult it is to find our tumors, this type of NET provides a whole new meaning to that experience. I take it that a 72 hour fast, means no food for 72 hours and then they add some meals and test and re-test your sugar levels? I’m copying this to the rest of our group for their information and feedback, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes

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A 72 hour fast, fortunately does not always last 72 hours. You start fasting and fast up until blood sugars to drop to less than 50. Once they do, they draw labs and can use that information to determine if an insulinoma is likely. The test can last up to 72 hours and is stopped at that point if sugar does not drop. Sugars are checked hourly. A mixed meal test starts with fasting labs and then you eat and take sugars and other labs every 30 min. Thanks.

@ahtaylor So, it sounds as if you might spend at least a day or more at the lab having blood drawn and eating. What has been your longest time for this kind of test? Teresa

@hopeful33250

@ahtaylor So, it sounds as if you might spend at least a day or more at the lab having blood drawn and eating. What has been your longest time for this kind of test? Teresa

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My 72 fasts have been the longest. I have done 2 of them. The first lasted 38 hours before my sugar dropped. But then I had complications with blood sugar stability and spent 2 more days in the hospital. The second one lasted 44 hours.

@ahtaylor That kind of drop in blood sugar must have been very frightening.

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

@ahtaylor

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

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@ahtaylor I’m sorry to hear of the two new insulinomas, even though you are probably not surprised given the symptoms. Are Illinoisans always located in the pancreas (and is that why they affect blood sugar)?

Yes they are in the pancreas unless they metastasize but are generally benign and don’t metastasize. The tumors themselves produce insulin and cause the hypoglycemia. Normal insulin production is regulated in a feedback loop so it does not overproduce.

@ahtaylor

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

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@ahtaylor Hi, its been a while since we last heard from you. I am under the impression that you will be having surgery in the near future. Has a surgery date been set yet? Keep in touch with us as you are able. Teresa

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