Thanks to each of you for the helpful info, I really appreciate your replies. I will definitely be researching Dr Liu to see what his experience with insulinomas might be. Allison, I would really like to chat with you and I will be in contact soon – thank you!
Teresa, you had asked how I am limited by my symptoms. Now that these hypos seem to be happening more frequently and can be so random it has had a huge impact on myself and my families lives. I had to stop mountain biking and hiking and basically exercising in general because it seems to bring on the hypos. Two weeks ago I caught this cold and cough that has been going around. I completely lost my appetite for about 4 days and boy was I in trouble. I could not get my BS above 50 for several days. I went to the ER at one point and they had absolutely no clue what was going on. They sent me for a CT (because I was also having some abd pain) but it was not set properly to have a chance at finding an insulinoma. The ER Dr told me that I needed to stop driving. One good thing that came from the ER visit is that I was able to get into the endocrinologist much sooner than my original appt which was 3 mos out :-(. In January my primary "ruled out" an insulinoma after checking my labs. The endocrinologist informed me that all of those labs must be rechecked when my BS is low and that none of the labs that my primary checked told him anything. So I was sent off last week for a 72hr fast in the hospital and those lab results are all pointing to an insulinoma. My husband has had to cancel business trips b/c I couldn't be home alone with our children and or safely drive them to school/events. I will say that after reading as much as I possibly can on insulinomas I do consider myself fortunate. I happen to be an RN and therefore familiar with symptoms of hypoglycemia. When my lips started tingling and I was getting diaphoretic and shaky I instantly thought hypoglycemia. I went and bought a glucometer the next day and waited for the symptoms to come back. The first time that I was symptomatic and was able to actually check my BS, it was 31!!! I couldn't believe it! It was extremely helpful to my Endocrinologist to have a log of all of my hypos for the past 3 mos but it has been extremely frustrating trying to find someone that knows anything about insulinomas or diagnosing me. I have an MRI scheduled for Tuesday…the search is on.
Thanks again for the info.