Diagnosing or Ruling out Insulinoma
Fairly new to this forum as I navigate the slow process of diagnosing or definitively ruling out an Insulinoma. First visit with an endocrinologist last week believed my frequent episodes hypoglycemia (non-diabetic) is caused by a a combination of Zepbound/Mounjaro (that I had discontinued several weeks ago) and a pancreas that doesn’t function well with carbohydrates. They suggested I follow a low-glycemic/post-bariatric surgery diet and return in 4 weeks for a follow-up. I have never had bariatric surgery, not diabetic, do not abuse alcohol, discontinued Zepbound/Mounjaro (for weight loss), no exogenous insulin, etc. I lost 55 pounds over 2.5 years while on Mounjaro and am/was very fit until I started gaining weight in May. I will add I was on Mounjaro while starting to gain weight. I have had frequent/almost daily episodes of Hypoglycemia with 1 episode requiring an ER visit and 2 in the last week that were refractory and lasted over 10+ hours, going in and out of hypoglycemia with a resolution period anywhere from 45 minutes to 2+/- hours with 30g carbs each episode. It was the last “refractory” episode that prompted my endo to prescribe Baqsimi (glucagon nasal powder) which I have read in the insert is contraindicated if you have an Insulinoma. They would like to order a 72 hour fast but was required by insurance to order an 8-12 hour initial blood fasting test which I had today: glucose (value was 93 mg/dL), insulin (value 10 uIU/ml), and c-peptide (still waiting on). Worried insurance will not approve the hospital stay and what my next steps should be.
My questions are:
Are refractory episodes of Hypoglycemia a strong indication for an Insulinoma?
Has anyone with an Insulinoma been prescribed Baqsimi for emergency use?
How to find “best” Dr./hospital locally with experience with Insulinoma. I live in Denver, Colorado. Not opposed traveling to a Mayo Clinic for testing if warranted. Which location is best for diagnosing/treating Insulinoma?
Thanks for your help!
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Have you had CT, PET scans or an MRI?
Hi Zacharycat
No scans yet. No 72 hour fast scheduled as of yet. No word from my endo on initial blood work that all came back in range (no surprise there). Feeling very anxious waiting for answers or next steps to be taken.
I did have an initial call with Mayo Clinic yesterday and had 2 conversations. One was with the endocrinology dept and was told they would review my case and let me know in 5-7 days if they will take me on. This was after I was told by the initial person I spoke with at length that my case sounds like I would be able to automatically schedule with an endocrinologist at Mayo.
The anxiety of not knowing what is causing my frequent and sometimes prolonged episodes of hypoglycemia while having so many unanswered questions is unnerving.