Insulinoma testing at Mayo

Posted by justkeepswimming @justkeepswimming, Jan 24, 2016

Hi,

I recently saw an endocrinologist in my area (Utah) who suspects I may have an insulinoma, and recommended a 72-hour supervised fast to rule it out. However, he told me he was unable to facilitate the test, and that I may have to go to Mayo to get it done. Since the supervised fast only involves blood work and observation this seemed strange to me. However, after checking with several local doctors and hospitals, I have been informed that none of them will conduct the test, due to the inherent risks (severe symptoms induced by hypoglycemia). Basically it sounds like they are concerned about liability.

How common is it for patients to come to Mayo for specific testing (pre-diagnosis)? I've read that a doctor's referral goes a long way towards expediting the appointment process. Does this apply in this sort of scenario as well?

Also, if there is anyone reading this who has been tested for or diagnosed with an insulinoma, I would love to hear how coordinating the testing worked for you.

A little history:
I am a 27 year old female. For 2 1/2 years now I have been experiencing periodic episodes of low blood sugar during fasting. Each is accompanied by symptoms (hunger, shakiness, dizziness, palpitations, clumsiness, tingling, nausea, headache, abdominal discomfort, confusion), and relieved by glucose administration. When the episodes first began, they were very frequent, and waking me up from sleep. I had to get up every few hours to have a snack. Since then I have since been able to reduce and manage them by strictly adhering to a low glycemic index diet and eating small meals every 2-3 hours.

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I have learned today I am also having an intra-arterial calcium stimulation test during my week visit to Mayo. Just curious of what is involved and how the test goes . . . Anyone have any information? Most of what can be found on the internet is in medical journals and not so much about what happens from the patient perspective. Thanks for any information.

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@ahtaylor

I have learned today I am also having an intra-arterial calcium stimulation test during my week visit to Mayo. Just curious of what is involved and how the test goes . . . Anyone have any information? Most of what can be found on the internet is in medical journals and not so much about what happens from the patient perspective. Thanks for any information.

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@hopeful33250, have you ever had an intra-arterial calcium stimulation test? AHTaylor is looking for first-hand experiences with the test.

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@ahtaylor Thanks for sharing your symptoms and diagnostic tests. I am not familiar with the intra-arterial calcium stimulation test you mentioned. It will be of interest to many of us if you let us know about it, though. I appreciate your sharing your health journey with us. What is the date of your visit to Mayo? Please keep us posted and best wishes as you go to Mayo. I've heard wonderful comments about the doctors at Mayo.

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@hopeful33250

@ahtaylor Thanks for sharing your symptoms and diagnostic tests. I am not familiar with the intra-arterial calcium stimulation test you mentioned. It will be of interest to many of us if you let us know about it, though. I appreciate your sharing your health journey with us. What is the date of your visit to Mayo? Please keep us posted and best wishes as you go to Mayo. I've heard wonderful comments about the doctors at Mayo.

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Thanks for the reply. I will be at Mayo all of next week. I have a series of well coordinated test and provider visits. This will be my first experience at Mayo but I am impressed so far. They have made sure my visit will be comprehensive and well worth the travel.

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Hi. I’m am 43 and for 2 years battling the same issues you are. As I type I’m in the hotel awaiting my appointment for tomorrow at Mayo in MN. 72 hour fast. I’ll keep you posted

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@fighter78

Hi. I’m am 43 and for 2 years battling the same issues you are. As I type I’m in the hotel awaiting my appointment for tomorrow at Mayo in MN. 72 hour fast. I’ll keep you posted

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Hi! How did your fast at Mayo go?

I am going in two weeks to also do the 72 hour fast. I'd love any insight on what to expect

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@ahtaylor

Thank you so much for the information. I will check out the article and testing information. The symptoms I am experiencing are mostly postprandial as they were before surgery and vary from lightheadedness, numbness of lips and tongue to confusion or just feeling out of it. I manage with glucose tablets primarily. Although I have to be careful, too many too quickly will prompt a 2nd or repeated episodes. I usually try to limit to one and no more than two tablets because of this. My symptoms pre-operatively were the same as they are now. I do keep glucagon kits around but have never had to use one outside of the hospital episode during my first 72 hour fast. I have also learned to be very careful about when I eat relative to when I will need to drive somewhere as my blood sugar will drop within 30 - 1 hour after I eat. For example, I will eat breakfast in the car on my way to work (I work at a hospital) so that my blood sugar will not drop until I am at work and usually before meetings start. It is a balancing act no doubt!
One correction to my previous post - I am 43 not 47 - hit the wrong key and did not catch it. Maybe I can blame it on a hypoglycemic moment! :).
Thanks again for the information. If you have other helpful links, posts or information feel free to send my way. I will be at Mayo at the end of this month.

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Our situations are so similar! My issues started after my gastric bypass surgery in 2021. I can only consume a maximum carb count of 10. I drop within 30-1 hour also. If I take more glucose tabs than 1.5-2, I will raise to fast and then drop again. I am currently waiting on a MRI of my Pancreas. I wonder if this will show an Insulinoma if there is one there?

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