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NET - Insulinoma
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.
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gaylejean:I’m interested in any information about the mayo clinic as I have an appointment with an endocrinologist July 6 for insulinoma -ridgerunner also interested in how to handle hypoglycemia
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2 ReactionsThere is a group called best doctors that when given your symptoms they can help you locate specialist in the area that’s needed I believe you can find their number online and is usually available through insurance companies
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2 ReactionsKappie, I wanted to clarify that Mayo Clinic has 3 locations: Rochester, Minnesota where @ahtaylor sought treatment as well as in Phoenix, Arizona and Jacksonville, Florida. Perhaps the MN or AZ locations would be more convenient for you. You can always call the appointment office to find out more about our specialists and expertise in treating insulinoma. Here's the contact information for all 3 campuses: http://mayocl.in/1mtmR63
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1 ReactionI am also not familiar with the insulinoma work at Johns Hopkins. I can only speak to my experience at Mayo and in NC. I am fortunate that my symptoms are only associated with the hypoglycemia episodes. I am sorry to hear you have issues that are broader and associated with the insulinoma. My experience on flights, especially to Rochester, is they have means to take good care of passengers that have difficulty. I travel about 4 hours by plane to Rochester about every 6 months. For me, it is worth the travel for the care I receive at Mayo. I hope you are able to find a solution that works best for you. Please let me know if there is other information I can provide. Best wishes to you and in your journey.
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2 ReactionsHello @kapple
I'm not familiar with John Hopkin's work with insulinoma, however, I do hear good reports about Mayo Clinic's doctors.
If you are interested in an appointment at Mayo Clinic in Minnesota or another location, here is the website that will give you appointment information.
https://www.mayoclinic.org/appointments
They also have a concierge service that will help out-of-town patients with travel/lodging information.
Will you keep in touch and let me know how you are doing?
hi hopeful, My blood work was always within range however I suffered from Extreme fatigue and weakness, diabetes like symptoms even including neuropathy -a gallium 68 scan confirmed a small insulinoma which would explain a lot of my issues- I dread the thought of flying to the East Coast due to my condition however I will check into it thank you for the information- I have also heard of John Hopkins that deals with an insulinoma are you familiar with this hospital?
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1 ReactionHello @ahtaylor
Thank you for your response to both my question as well as responding to @kapple. I'm glad to know that the Victoza is providing some relief for your blood sugar drops. Any relief improves the quality of life
@kapple, I would like to point out that both @ahtaylor and @preeti have flown to Mayo in Minnesota as they both live on the East coast as I recall.
I have started the Victoza. While it has not stopped the hypoglycemia episodes, it seemingly has reduced some of the severity of the drops so they are not as symptomatic. This seems to be related to less variation in my blood sugar levels. Trying a dose change to see if it has more of an impact. Thanks for checking.
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1 ReactionTeresa,
Thanks for including me in the response.
@kapple - I am more than happy to share my experience. In the short story version - I have been a patient at Mayo Clinic for multiple recurrent insulinomas since 2017. I have a fantastic endocrinologist at Mayo who does specialize in insulinomas. His name is Dr. Adrian Vella. I am so very happy to be a patient at Mayo and know I am in great hands. My case is a bit complicated in that I had 2 insulinomas removed in 2015 in NC and 9 more removed at Mayo in 2017. I have 2 more that are inoperable so I continue to be under Dr. Vella's care for medical management of the insulinomas. I feel blessed to have been connected with Dr. Vella and Mayo Clinic. If there are any questions I can answer, please let me know.
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2 ReactionsHello @kapple, I would first like to welcome you to Mayo Clinic Connect. I'm glad that you found this online support network where patients give and receive support.
Finding a specialist who treats insulinoma is difficult. You are right that it is rare and you definitely need to see someone who specializes in this disorder. Two Connect members who have recently posted are @preeti and @ahtaylor. If you read their posts you will see that they have both travelled to Mayo Clinic in Rochester, MN for their treatment.
You posted that you were recently diagnosed with a small insulinoma. What symptoms were you having that led your doctor to look into this?