I have had Type I Juvenile Diabetes for 56 years.

MCC…of course!

I get how the unpredictable nature of type 1.5 messes things up. Do they have any idea how much longer she will produce insulin?

I have read about a product called Smart Insulin that when injected determines how to balance the proper blood sugar level. I know it sounds bizarre, but I swear it’s true. I don’t know how far away from approval it is. I’m posting a link about it. If there’s a problem with it, will a mod please kindly remove it.
https://type1diabetesgrandchallenge.org.uk/news/new-smart-insulin-promising-step-forward-in-type-1-diabetes-treatment/

@jc76 hello again. I am the poster who mentioned “the diabetic rollercoaster”. Let’s talk more.

I’m sorry about your wife’s stomach surgeries and damage to the vagus nerve. The brain controls the operation of everything else all over the body by using the nervous system to carry messages. Diabetes can damage these nerves resulting in diabetic neuropathy. Damaged nerves that control internal functions is called autonomic neuropathy. This is usually the cause of gastroparesis. Gastro- means stomach and paresis- is like paralysis. Simply put it is a slowing of stomach emptying such that food does not move through the digestive system as it should.

Stomach surgeries aren’t typically the cause of gastroparesis or vagus nerve damage. It usually originates with uncontrolled diabetes.

I am sorry about your wife’s left eye damage due to her diabetes. This is another example of what uncontrolled diabetes can do. The A1C test shows how the blood sugars have been over a period of time. Non diabetics measure around 5. Controlled diabetics are under 8. Your wife’s team is concerned for her safety when they cancelled her eye surgery due to an A1C of 9. Uncontrolled diabetes increases risks of there being unpleasant complications during surgery and makes healing & recovery more difficult.

I’ve talked a lot about uncontrolled diabetes. You mentioned your wife’s lows going way down, having to drink glucose, then having highs into the 300’s. This is “the rollercoaster”!

At Mayo Clinic Connect we members should not diagnose. This is not a diagnosis. Your wife’s situation sounds very familiar from my own experience. We share our stories to offer hope and encouragement. Here’s mine. Low blood sugars are VERY scary and make you feel completely out of control. You can’t wait for things to improve and will do anything to get better fast. This can easily result in overtreating the low such as eating or drinking everything but the kitchen sink! That causes a spike in blood sugars, then the need for correction insulin, then you’ve gotten onto a never ending rollercoaster cycle.

When low I was taught to test blood sugar using a meter. (Some continual glucose monitors / CGM’s are not accurate with lows, less than 40 or highs, greater than 300 - 400’s.) If the test is low (my low number from my provider is 70 or less) consume 15 grams of carbohydrate and WAIT 15 minutes. Then repeat. This is called the 15 - 15 rule. I use 15 grams of fruit juice which is about 1/2 - 1 cup depending on the juice. Learn to read the carbohydrate content on the nutrition label. The liquid is quickly absorbed, no digestion needed which is helpful for gastroparesis. The waiting is really hard to do but prevents overtreating and the resulting spike in blood sugar then the rollercoaster. The only exception to this is that if the blood sugar is REALLY low (for me this is less than 40) start with 30 grams of carbohydrate.

I hope this is helpful and useful to you and your wife. We would be happy to welcome her to Mayo Clinic Connect. We love to support each other as best we can.

@cehunt57
Wow what can I say. Great information. I told my wife about the diabetic roller coaster from your previous post and we both said "yep that is her."

I am going to copy your response and send to her on an e-mail. The information you gave is excellent and I truly appreciate it. The information on the gastro perisis (spell) is so good for her to understand her diabetes is causing this.

You are right on it what she does to counter the highs and lows. Her Descom 7 just seems to not keep her numbers down. She just did another A1C and it is 8.7 so better than 9 but still can't have the surgery.

If you can provide some encouragement for her to join MCC I would appreciate it. I do try to use MCC for her as I am on it for several of my medical issues but have trouble confincing her such a valuble information source and inspirations from others.

It is good that your wife’s A1C is improving.
Please remember that the Dexcom 7 is a monitor. It is NOT an insulin delivery system and as such it will “NOT keep her numbers down”. It is NOT meant to. It monitors the numbers to provide information for her & an insulin delivery system device (if she uses one) to make good decisions about insulin dosing (basal, mealtime and correction boluses).
In a previous text I did say that your wife would be welcome at Mayo Clinic Connect. It would be way better for her to see for herself rather than getting second hand emails from you on her behalf.
In the meantime how can Mayo Clinic Connect support you? You are the member. How can we help?

@celia16 hello, I want to make sure I understand your diabetes devices. Is your Medtronic 780 G4 an insulin pump? What do you use to track blood sugars? I’m curious because I used a Medtronic insulin pump back in the late 1990’s early 2000’s. It was a pump with tubing that was not very user friendly. Now I am using a Dexcom G6 CGM (plus a meter for finger sticks) and an Omnipod 5 insulin pump. These were recommended by a Mayo endocrinologist and my local endocrinologist concurs. The pump is programmed to deliver basal insulin (24/7) plus I can add a mealtime &/or correction bolus as needed. The CGM tracks where the blood sugar is headed and communicates with me and the pump to suggest the appropriate mealtime &/or correction boluses. So the CGM and pump work together to help keep me on track. I am not aware of any one device that does the whole job but I’m sure research and development teams are working hard to invent something like this.