I had my final visit of this series at Mayo on Thursday. I started at 7:30 am with a Mixed Meal Tolerance Test that lasted 5 hours and consisted of 30 blood draws.
After that was completed I had an appointment with the diabetic nurse and had a Continuous Glucose Monitor (CGM) placed. This is a device that is placed against the abdomen and inserted into the abdomen leaving a plastic piece with an adhesive patch on the outside skin. Then the sensor is placed and locked into that. It sends information to a device that looks kind of like an old style iPod. I have to keep this device with me at all times or within at least 20 feet of it to transmit the information. This device measures glucose levels based on interstitial fluid and has a 10-20 minute lag of actual blood glucose. It is set to alarm me at the first sign of a low glucose level and then I still have to check my food sugar with a finger stick to verify my actual blood glucose. Although in ways it is more for me to do to track my levels it has so far prevented me from dropping below 50 and that is amazing. It has also alerted me at least once per night and up to three times a night that my glucose level is low. I had no idea that I was having hypoglycemia during my sleep but the endocrinologist that I saw was pretty confident that I was and he was correct.
The huge benefit of this CGM is that it is preventing me from dropping to the 20’s and 30’s glucose levels. Over time my body has adjusted to the lows that I am having and I was no longer getting the symptoms of lows until I am dangerously low. The monitor that I am wearing now will last until Thursday evening and at that point I will remove it and mail it back to Mayo Clinic so that they can interpret the results.
After this was placed I met with Dr. Kudva. He felt that at the very least I will be prescribed and wearing a CGM forever or until something better comes along. He is also considering starting a research study based on my status of having no stomach and severe hypoglycemia. The study would consist of wearing the CGM as well as a glucagon pump to release glucagon when levels fall. We will explore this option more after all of my test results are in and if there are enough people without stomachs and severe hypoglycemia that are willing and able to participate. Dr. Kudva will contact myself and my local drs after he has everything evaluated and a treatment plan in place. I am feeling hopeful at having a better way to manage this hypoglycemia.
Although it is expensive to travel repeatedly to Mayo Clinic and see their physicians, they have truly made a difference in the quality of my life. My local physicians are all great, but I am not the typical patient that they see and are sometimes baffled by my various conditions. It is a blessing to be able to combine the knowledge and treatment of both.