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justkeepswimming
@justkeepswimming

Posts: 3
Joined: Jan 25, 2016

Insulinoma testing at Mayo

Posted by @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.

REPLY

Hi @justkeepswimming, and welcome to Connect!

Patients can be referred to Mayo Clinic for diagnostic testing. If you click the “Request Appointment” button at the top right, you’ll get all the contact information for getting your questions asked with respect to a doctor referral etc.

I’m also tagging @sue1234 who chose to go to Mayo for a situation quite similar to yours. See this thread where you’ll also meet @m0473751 https://connect.mayoclinic.org/discussion/is-mayo-j-as-good-as-mayo-r-for-diagnostics/

Do you still get up during the nights to snack or has your diet been curbing that need?

Colleen
Connect Community Director

Hiya justkeepswimming.
I’ve never had an insulinoma, but I had to have a lot of testing done in Mayo Clinic due to being Diagnosed with HyperTrophic CardioMyopathy. And your doctor couldn’t put you in better hands. The Mayo Clinic is a Top Knotch Hospital, one of the Best in the United States. So it’s the best place you can go. I hope everything turns out alright for you!

while her doc believes it is an insulinoma…there is always the chance it could something else, like cancer. Mayo does the most comprehensive tests of any facility I have been to…and being a stage 4 cancer survivor ( besides fixing my broken heart!) I trust Mayo! They have board discussions so you are not only getting the opinion of some guy reading the results, but many!- Lynn

Hi j@ustkeepswimming, I do not have insulinoma, but I have had a great deal of testing for hypertrophic cardiomyopathy. I was treated other places, but never had the level of testing and knowledge I have had since I have been at Mayo. The testing is state of the art, the staff is top notch and the patient comes first. You will find that your questions are answered, and you should leave with a knowledge of what is going on with your body that you may not have now. Knowledge is power and you could not be in better hands.

@colleenyoung

Hi @justkeepswimming, and welcome to Connect!

Patients can be referred to Mayo Clinic for diagnostic testing. If you click the “Request Appointment” button at the top right, you’ll get all the contact information for getting your questions asked with respect to a doctor referral etc.

I’m also tagging @sue1234 who chose to go to Mayo for a situation quite similar to yours. See this thread where you’ll also meet @m0473751 https://connect.mayoclinic.org/discussion/is-mayo-j-as-good-as-mayo-r-for-diagnostics/

Do you still get up during the nights to snack or has your diet been curbing that need?

Colleen
Connect Community Director

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Thanks Colleen! That is very helpful information. My diet has made nights more manageable. Some nights I can make it through the whole night, other times I have to get up 1-2 times during the night for a snack. It’s much better than it was in the beginning, when I was having to get up 4-6 times a night.

Thanks everyone! I really appreciate your insights!

I recently underwent surgery for HCM with a septal myectomy. Last April, my tests began immediately after a nurse practitioner discovered a heart murmur. It began with an echocardiogram, where my hypertrophic cardiomyopathy with obstruction was discovered. After that, I was scheduled for a chest X-Ray, MRI, electrocardiogram, extensive blood tests and had to wear a holter monitor for several days. I also had a stress test on a treadmill. Prior to surgery several months later, I had more blood work, a chest X-Ray, another echocardiogram, and an angiogram which was all standard. Full-disclosure, I am a Mayo employee and I am lucky that it was discovered here. Somebody was looking over my shoulder. That alone says something about this outstanding center of excellence for cardiovascular issues and in my case, HCM.

Greetings,
I am a 47 year old female patient who was diagnosed with 2 insulinomas in July 2015. I was diagnosed by the 72 hour fast. I did not have my test at Mayo (however I will let you know my connection to Mayo) but I did have it at Duke University Medical Center in NC. I would highly recommend having the test done at a facility that does them routinely. At the end of the test, they give you glucagon and (if needed) D50. I was given both and responded with a blood sugar of 20 and was a rapid response. After a 2nd round, my blood sugar went up and back down to 25 – again a rapid response was called. They started me on a D10 infusion and kept me for 2 more days. The insulinomas were diagnosed before I went home. I had surgery at the end of July and spent 11 days in the hospital. Approximately 3 months after my surgery I started to become symptomatic and with progressing symptoms since then, there is suspicion that there is another or a regrowth of the original insulinoma(s). Given the possible recurrence, I have been referred to Mayo. That is what brings me to your post. I see it is a post from about a year ago. I would be interested if you have any updates and/or experience with the insulinoma testing at Mayo. Thanks.

Hello @ahtaylor,

Welcome to Connect. This must be so distressing for you, but I want to assure you that you have come to a community where you will find much support and information

Here is a link to the Endocrinology Update magazine, where you will see a recent article related to hypoglycemia and insulinoma testing at Mayo Clinic: http://mayocl.in/2iWWW9p
You can also view the specific tests conducted on this Mayo Medical Laboratories page: http://mayocl.in/2iX2jp5

In the meantime, I hope @justkeepswimming, @sue1234, @Sensation, @lynnkay1956, will return with some insight for you.

@ahtaylor, what symptoms are you experiencing? How are you managing them?

@kanaazpereira

Hello @ahtaylor,

Welcome to Connect. This must be so distressing for you, but I want to assure you that you have come to a community where you will find much support and information

Here is a link to the Endocrinology Update magazine, where you will see a recent article related to hypoglycemia and insulinoma testing at Mayo Clinic: http://mayocl.in/2iWWW9p
You can also view the specific tests conducted on this Mayo Medical Laboratories page: http://mayocl.in/2iX2jp5

In the meantime, I hope @justkeepswimming, @sue1234, @Sensation, @lynnkay1956, will return with some insight for you.

@ahtaylor, what symptoms are you experiencing? How are you managing them?

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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.

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.

@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.

@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.

@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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