1. < Neuroendocrine Tumors (NETs)

Does Mayo Clinic do insulinoma testing?

Posted by bsteph9210 @bsteph9210, Feb 27 9:53pm

Hi,

I am 31 years old, and have been dealing with progressively worsening hypoglycemic symptoms for 6 years, out of which 3 of those years have included several episodes requiring assistance, sometimes multiple episodes a month. The lowest I have seen my glucometer read is 40 mg/dl. I have been seen by several local Endocrinologists in the last 3 years, and seem to be getting nowhere. I have been repeatedly told that a 72 hour fast is not an option due to insurance will not cover it. My spouse and I continue to try to do outpatient labwork, but it's been difficult and very unsafe to continue to try to do this. The episodes are so sporadic. I can't seem to do much exercise without having to snack before, during, and after. Sometimes my blood sugar still drops hours later. I have gone anywhere from 3 to 30 hours fasting before developing severe symptoms that require assistance, and these symptoms typically occur in the evening or overnight hours when the lab isn't open. Since Nov. 2023, I have hit my head 3 times from falling during episodes. 1 time resulted in a concussion. Neuro has ruled out seizures and cardiology has ruled out cardiac causes.

I don't know how to further proceed because I can't afford to pay out of pocket for 72 hour fasting, which my local endocrinologist informed me I would have to do. I don't understand why it's so hard to get insurance to approve safely testing. Does Mayo clinic have the ability to get health insurance to cover testing to rule out insulinoma?

Thank you,
Bethany

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

ahtaylor | @ahtaylor | Feb 28 7:20am

Bethany,
I cannot answer the insurance question so I will defer that to someone else who has more insight into that aspect. However, I have been through insulinoma testing at Mayo. The hospital in NC where I had my original 72 fast that was positive found 2 insulinomas with a endoscopic ultrasound after the fast. When hypoglycemia persisted after my Whipple procedure, my NC endocrinologist referred me to Mayo. Through a week of testing and subsequent surgery, there were 9 more insulinomas. Mayo has several tests that can be done when searching for insulinomas. I am happy to answer any questions you may regarding the testing and wish you the best in your journey! Take care!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 28 7:33pm

Hello @bsteph9210, Bethany, and welcome to the NETs support group on Mayo Connect. I see that @ahtaylor has already responded to your question about insulinoma testing. The insurance question is one that you will need to discuss with your insurance carrier. In the meantime, have you had any scans of the pancreas or other blood tests?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4 9:42pm

@bsteph9210, I recommend calling Mayo Clinic Patient Account Services to discuss insurance options available to you. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

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mtnmom | @mtnmom | Mar 19 8:52am
In reply to @ahtaylor "Bethany, I cannot answer the insurance question so I will defer that to someone else who..." + (show)
@ahtaylor

Bethany,
I cannot answer the insurance question so I will defer that to someone else who has more insight into that aspect. However, I have been through insulinoma testing at Mayo. The hospital in NC where I had my original 72 fast that was positive found 2 insulinomas with a endoscopic ultrasound after the fast. When hypoglycemia persisted after my Whipple procedure, my NC endocrinologist referred me to Mayo. Through a week of testing and subsequent surgery, there were 9 more insulinomas. Mayo has several tests that can be done when searching for insulinomas. I am happy to answer any questions you may regarding the testing and wish you the best in your journey! Take care!

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Do you mind me asking if you felt the hospital/doctor in North Carolina was an excellent experience? I am also located in NC and wondering if I should just go to Mayo for all the testing or if there are any specialists near me when it comes time for surgery. It seems there is one at Duke but that is the only one with insulinoma experience I can find. Would love to know your thoughts!

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1 reply
ahtaylor | @ahtaylor | Mar 20 11:02am
In reply to @mtnmom "Do you mind me asking if you felt the hospital/doctor in North Carolina was an excellent..." + (show)
@mtnmom

Do you mind me asking if you felt the hospital/doctor in North Carolina was an excellent experience? I am also located in NC and wondering if I should just go to Mayo for all the testing or if there are any specialists near me when it comes time for surgery. It seems there is one at Duke but that is the only one with insulinoma experience I can find. Would love to know your thoughts!

Jump to this post

I did have a good experience in NC. Duke is where my initial diagnosis and was made as well as my first surgery in 2015. I had a great endocrinologist who was diligent in getting to my diagnosis. I ended up at Mayo when I had recurrence of hypoglycemia 3 months after my Whipple. They were unable to locate any additional tumors with MRI or Endoscopic US at Duke and so my endocrinologist there referred me to Mayo for additional testing in 2017. I had a week of testing and as a result 4 additional tumors were located. 5 more were found during surgery. Clearly my tumors are experts at hide-n-seek - a month after my surgery at Mayo I started having hypoglycemia again. We now know from one of the tests there are additional tumors in my pancreas and, as of 2023 my liver. We know what general area of the organs they are located but unable to pinpoint exact location due to small size. On average, I am at Mayo about every 6 months for repeat scans and follow up with my endocrinologist. I have had excellent care at Mayo Clinic.
As for which place to go, that is a very individual decision but I had no concerns at either place with the care I have received. The majority of my care has been at Mayo but if you have specific questions about either place, I will be happy to answer what I can based on my experiences.
Best wishes in your journey!

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1 reply
mtnmom | @mtnmom | Mar 20 12:20pm
In reply to @ahtaylor "I did have a good experience in NC. Duke is where my initial diagnosis and was..." + (show)
@ahtaylor

I did have a good experience in NC. Duke is where my initial diagnosis and was made as well as my first surgery in 2015. I had a great endocrinologist who was diligent in getting to my diagnosis. I ended up at Mayo when I had recurrence of hypoglycemia 3 months after my Whipple. They were unable to locate any additional tumors with MRI or Endoscopic US at Duke and so my endocrinologist there referred me to Mayo for additional testing in 2017. I had a week of testing and as a result 4 additional tumors were located. 5 more were found during surgery. Clearly my tumors are experts at hide-n-seek - a month after my surgery at Mayo I started having hypoglycemia again. We now know from one of the tests there are additional tumors in my pancreas and, as of 2023 my liver. We know what general area of the organs they are located but unable to pinpoint exact location due to small size. On average, I am at Mayo about every 6 months for repeat scans and follow up with my endocrinologist. I have had excellent care at Mayo Clinic.
As for which place to go, that is a very individual decision but I had no concerns at either place with the care I have received. The majority of my care has been at Mayo but if you have specific questions about either place, I will be happy to answer what I can based on my experiences.
Best wishes in your journey!

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Thanks @ahtaylor !
That’s good to hear. I just saw one in Charlotte who wants me to work with a dietician and possibly take Acarbose. I do think the dietician will be helpful but was surprised she didn’t recommend a fasting test to rule out insulinoma.
Would you mind if I private messaged you about who you saw in Nc?

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1 reply
ahtaylor | @ahtaylor | Mar 20 12:24pm
In reply to @mtnmom "Thanks @ahtaylor ! That’s good to hear. I just saw one in Charlotte who wants me..." + (show)
@mtnmom

Thanks @ahtaylor !
That’s good to hear. I just saw one in Charlotte who wants me to work with a dietician and possibly take Acarbose. I do think the dietician will be helpful but was surprised she didn’t recommend a fasting test to rule out insulinoma.
Would you mind if I private messaged you about who you saw in Nc?

Jump to this post

Sure. Happy to help in that way.

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