Welcome to the group! Insulinoma diagnosis can be tricky. In brief, I was diagnosed in 2015 and it took around a year to get to the diagnosis. My first endocrinologist, after a long consultation, stated “you are not really hypoglycemic” and wanted to refer me to a neurologist. After driving with my 2 small kids (at that time) and not knowing where I was and a glucometer reading of 34, I got a second opinion. My PCP set up both endocrinology referrals. After a year of various testing, the second endocrinologist set me up for a 72 hour fast which is one of the better diagnostic tests. My blood sugar dropped around hour 38 and my labs pointed to an insulinoma. An endoscopic ultrasound revealed 2 and I had a modified Whipple in 2015. In 2017, I was referred to Mayo after hypoglycemia persisted and increased in frequency and severity. Prior to the referral - 2 MRIs and and endoscopic ultrasound did not reveal any additional insulinomas. However, after a week of extensive testing at Mayo, 4 more were found and an additional 5 were found during my surgery at Mayo. A month later the hypoglycemia recurred and after additional testing - Only through a test called a calcium stimulation test - have we discovered there are additional insulinomas in my pancreas and as of April 2023, my liver. None of them show up on imaging. All that to say, finding/diagnosing insulinomas is not always simple.
A couple of thoughts - Have you tried a different endocrinologist? What testing other than a CT has been done? I could talk all day on this topic and would love to be of any assistance I can 🙂
I truly understand the frustration! Continue to be your husband’s advocate! Continue to seek out the care you feel he needs, until you have answers you need! Please let me know if there is any additional information you feel would be helpful or if you would like to connect in conversation. I am happy to do so.
Best wishes in this journey - keep fighting!