I have had Type I Juvenile Diabetes for 56 years.

@aschafer
I am on MCC for my wife who is a diabetic 1. She was diagnosed as a diabetec 1.5 about 4 years ago.

She had 3 stomach surgeries and one damage a vagas nerve which caused the pancreas not to talk to brain.

She is really in the uncontrolled status with her diabetes. One poster stated it is like being on a diabetic rollercoaster. Could not describe it any better.

She has the G7 system but constantly having to make changes as lows will go way down and have to drink glucose and then will have real highs up into the 300s and have to put insulin. She works with a endocronologist at Mayo but can't see to get it under control.

I think her problems are from the stomach surgery which caused gatrio perisise (spell) which she does not digest food the way she is suppose to.

Her diabetes caused damaged to her left eye causing double vision. After 6 months she was suppose to have surgery to correct it but was cancelled the day before (06/11/25) because her A1C test was 9 and they insisted it be below 8 to have the surgery.

Would be glad to hear from you as a diabetic 1 as most on MCC are 2s.

Hey @aschafer, that’s pretty impressive! I’ve been type 1 for about 24 years. I’m doing pretty well, but doubt I could offer you much based on your record. I will look out for any tips you might post.

What is MCC?
Type 1.5 diabetes can be very challenging. I’m type 1 and have used Dexcom cgm, but now use Medtronic 780 G4, which is an automated system that provides automated insulin delivery. I’m not sure if that type of treatment works well for those with 1.5. I hope you can find some helpful suggestions for your wife. Good that she’s seeing Mayo.

@celia16
MCC, abbreviation for Mayo Community Connect.

She is on the Dexcom 7 now with the programmed automatic insulin. I think the problem with 1.5 is the pancreas works sometimes and sometimes not. How do you program insulin if you don't know if the body is going to produce some.

I sure wish those rocket scientists would invent a new device that monitors glucose and can administer insulin or glucose as needed.

To aggravate her diabetes, she had 3 stomach surgeries which left her with gastroparesis. That is a condition where the stomach does not digest the food into the small intestine as fast as it should.

oh hi!! juvenile REAL diabetic since 1971!! yes, still licking, kind of. 68 now and i'm tired of it all. 3 transplants - kidney in 2002 and 2007, pancreas in 2009. that was the greatest thing in the world. only lasted 3.5 years but best 3,5 years in my life. birthday pancreas somehow died along with transplanted one so no pancreas at all for about 13 years, lots of pills though. i am old school all the way - vials of insulin 1/3cc syringes, bs machine and strips.

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/

@celia16
Thanks for the information. I am copying your message and sending this information to my wife.

I have not heard her mention smart insulin. I will ask her about it. I got to get her to come on MCC.

@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.

@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.

@cicinla hello from one “REAL” diabetic to another. I was diagnosed Type 1 in 1975 when I was 18 years old. (So you have 4 more years than me, but it is not a contest!) I am 68 years old now also. It does become tiresome doesn’t it? But we are still here.
I was particularly interested in your transplant history. I started mine in the reverse of yours. I had a pancreas transplant in 2005. I did this to save my kidneys and my vision. I was considered brittle diabetic and was starting to have diabetic complications such as mild - moderate kidney disease, peripheral & autonomic neuropathy and retinopathy plus hypoglycemic unawareness. My A1C was in the double digits (the worst hit 13). So I had a pancreas transplant. I was not “cured” of diabetes by the transplant (as some people thought would happen) but for the first time since diagnosis the diabetes was controlled. My A1C was 5.3! The hypoglycemic unawareness disappeared. The neuropathy and retinopathy improved. The kidney disease remained stable. That pancreas transplant was like a gift from God or my own personal miracle. It had a really great run for about 11 years before the function started to decline. My providers politely question whether there’s any function at all. But I like to point out that my A1C is still only 6.6 (well controlled) and they are happy with that.
In 2016 my kidney function had declined to stage 4 CKD and I started looking into kidney transplant. I was evaluated and approved for kidney transplant. I hope to find a living kidney donor and be transplanted preemptively before dialysis becomes necessary. I’ve been inactively listed because my eGFR is in the 30’s. In other words I’m too healthy for active listing (less than 20)! I guess this is a nice problem to have.

Back to you. 13 years with no pancreas at all! I’m not sure I follow. You’ve had no pancreas since 2012 or 2013? That is your current situation? You are living proof that it is possible. I understand “old school”. We are the same age and I’m a bit afraid of technology. I’ve got to admit that the high tech devices have been helpful in controlling the diabetes. Perhaps you will consider these when you get too tired of old school. You might be pleasantly surprised and I’m pretty sure you can do it since you’ve already endured 3 transplants. Transplants are not old school!