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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27, 2023

Don't miss this week's Member Spotlight featuring fellow NETs member @ahtaylor interviewed by none other than NETs mentor @hopeful33250. Learn more about @ahtaylor behind the scenes and what motivates her to help others and find balance in life.

– Giving it All You've Got: Meet @ahtaylor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 2, 2022
In reply to @hoochinmama "Called tried to see an endocrinologist he told me there wasn't enough info on her problem..." + (show)
@hoochinmama

Called tried to see an endocrinologist he told me there wasn't enough info on her problem so my referral was denied 😒

Jump to this post

I suggest that you post on the Connect discussion group about Diabetes and endocrinology. Here is the link, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/.

Perhaps someone in this discussion group can offer some support and encouragement.

REPLY
hoochinmama | @hoochinmama | Dec 2, 2022
In reply to @hopeful33250 "@hoochinmama On Connect there is a discussion on blood sugar problems which might be more helpful..." + (show)
@hopeful33250

@hoochinmama

On Connect there is a discussion on blood sugar problems which might be more helpful to you. Here is the link, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/.

You might post about your daughter's hypoglycemia in that discussion group. There are many members there who can offer you some support.

How is your daughter feeling now? Is she currently seeing an endocrinologist for the hypoglycemia?

Jump to this post

Called tried to see an endocrinologist he told me there wasn't enough info on her problem so my referral was denied 😒

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 30, 2022
In reply to @hoochinmama "So my daughter has had a few Seizures but they can't find what's wrong. Everything comes..." + (show)
@hoochinmama

So my daughter has had a few Seizures but they can't find what's wrong. Everything comes back normal, I know she's not epileptic shes had maybe 8 in the last 5 years her last seizure was march of 2022 her fasting sugar shows its high, Doctors just say she is Hypo glycemic

Jump to this post

@hoochinmama

On Connect there is a discussion on blood sugar problems which might be more helpful to you. Here is the link, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/.

You might post about your daughter's hypoglycemia in that discussion group. There are many members there who can offer you some support.

How is your daughter feeling now? Is she currently seeing an endocrinologist for the hypoglycemia?

REPLY
1 reply
hoochinmama | @hoochinmama | Nov 29, 2022
In reply to @hopeful33250 "Hello @hoochinmama I see that you posted a while ago. Do you have a diagnosis or..." + (show)
@hopeful33250

Hello @hoochinmama

I see that you posted a while ago. Do you have a diagnosis or Insulinoma? What would you like to know?

Jump to this post

So my daughter has had a few Seizures but they can't find what's wrong. Everything comes back normal, I know she's not epileptic shes had maybe 8 in the last 5 years her last seizure was march of 2022 her fasting sugar shows its high, Doctors just say she is Hypo glycemic

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 29, 2022
In reply to @hoochinmama "I need Info On Isulinomas? not sure where else to turn" + (show)
@hoochinmama

I need Info On Isulinomas? not sure where else to turn

Jump to this post

Hello @hoochinmama

I see that you posted a while ago. Do you have a diagnosis or Insulinoma? What would you like to know?

REPLY
1 reply
jadedprincess | @jadedprincess | May 31, 2022

I do not have any symptoms, but I have had a couple of small blood clots. They present as a very painful, red, hot bump. I work in healthcare so I know to go in right away to be seen and treated. And of course, my labs usually scare the pudding out of any new doctor until I give them my history. 🙂

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 27, 2022
In reply to @jadedprincess "Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad..." + (show)
@jadedprincess

Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

Jump to this post

Hi @jadedprincess,

You mentioned having "high platelets" due to not having a spleen. Does this cause any particular symptoms?

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jadedprincess | @jadedprincess | May 26, 2022

Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

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1 reply
ahtaylor | @ahtaylor | Apr 13, 2022

Good morning and welcome to the group! What information are you looking for on insulinomas? I am happy to help in any way I can. I was first diagnosed with insulinomas in 2015 when I had 2 removed through a modified Whipple procedure in NC. I continued to be hypoglycemic and was referred to a great physician at Mayo Clinic. Through a series of tests/procedures, Mayo discovered and removed or ablated 9 additional tumors in 2017. I continue to have hypoglycemia and through testing know there are 1 or 2 more tiny tumors and surgery is not an option at this time. I had a procedure back in March of this year to control the hypoglycemia. Please share any questions and best wishes in your journey. Mayo is a great place to be a patient with insulinomas!

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