Joslin Type 1 Diabetes Study....Update

The Joslin Diabetes Center in Boston is studying long term type 1 diabetics to determine the factors that have resulted in their having long lives, without serious complications. If these factors can be established, then perhaps a treatment can be found that would enable younger and newly diagnosed type 1 diabetics to also have long, healthy lives. The following links give some history of the Study, and some of the discoveries made thus far:

Hi Richard: This is amazing. Thanks so much for posting this. :slight_smile:

So most of the medalists still produce some insulin? I wonder what this means for us that are c-peptide negative…

More than 60%, as I recall, produce a small amount of insulin. That amount is considered to be significant, and may help explain their longevity and lack of serious complications.

I have no insulin production that can be detected. My c-pep was less than 0.1. I have been T1 for 65 years, and have no D complications, except for some mild nerve damage. There has to be another reason to explain long healthy lives for people like me who have no insulin production.

Richard, you need to thank your parents for giving you good genes!

Just curious what your HDL is. One of the links you posted mentioned some of the T1s having a high HDL. Mine is normally in the 90s and low 100s. Maybe I will get a long life regardless of the complications!

Hi Kelly, my most recent HDL’s have been 72 and 55. There were medalists at the Joslin Medalist meeting in June who had complications, but all of them (more than 100 were present) had survived at least 50 years since being diagnosed. We were told that we are protected against the more normal diabetes complications, except for our hearts. We were told that we should take very good care of our hearts. Several medalists attending had bypass surgeries.

Kelly, I’ve had diabetes for about 39 years. My most recent HDL was 69 and my LDL was 79. I’m jealous of your 90s number!

Have you had any issues with complications? So far all I’ve had is frozen shoulder. Some eye damage, but appears to be due to ashtma meds.

Richard, I have read that you get plenty of exercise. Personally, I think that is key. And not just for blood sugar control. Type 1s have much greater cardiac risk. Regular exercise helps keep the heart healthy as well. Re the low carb diets: Because of the cardiac risk, until it could be proven otherwise, if I did go low carb, I would go low carb, low healthy fats, not the low carb, high fat version of the diet.

Bernard, I do have neuropathy (both peripheral & autonomic) and gastroparesis. I was diagnosed Jan, 84. I had retinopathy back in 95 & 96 but haven’t had any problems with my eyes since then other than cataract surgery. Since finding the DOC 3 years ago & learning all the good tips, I have been able to do better with BS control and hopefully that will help keep the complications from getting worse. One of the other studies Richard posted last year said that 17 years seems to be the magic number to get past with eye problems and then you shouldn’t have anymore – I have 2 more years to go with that. I was just at the eye doctor last week & my vision is 20/30 in both eyes.

Richard, I somehow missed your response last week. Good to know about our hearts. I always worry about that more than anything even with good HDL. I have flunked a couple stress tests and had 2 heart caths, but both came back clean. No one will say why, but I am guessing that neuropathy screws up the stress test.

Hi Richard, is this the full study (correct authors)?

If it is, then they are counting anything “detectable” as levels of 0.03 and above, and are including anyone with detectable insulin production in the 67.4% who “produce some insulin.” Only 7.5% of medalists produced c-peptide levels of 0.1 or higher. So it is really minimal levels, but it did note that those with levels in the higher ranges were associated with better control.

It does note that they found insulin in pancreases even of people who had undetectable levels of c-peptide, so they might still produce a minute, undetectable amount.

With such a high proportion of Type 1s seeming to have at least a few live beta cells, it could mean a possible cure if the immune system could be taught to stand down and the cells allowed to regenerate on their own.

Jen, the posts and links I have given is the extent of my knowledge on the medalist study. You have found a link that I had not seen. Thanks! I did hear the doctors heading the research speak on June 4 at Joslin.

The content of your last paragraph is definitely one thing they are hoping can be accomplished. It is also hope that a treatment can be devised that will help younger type 1 diabetics to also have long, healthy lives. They are looking at so many potential factors for explaining our success. Things like our environment, our family life starting in our childhood, our diets and exercise, occurrence of T1 among our relatives, and many other things I have probably forgotten. I filled out 20 or more pages of forms answering questions about my background , before traveling to Boston to participate in the study. They also requested a copy of all the A1c’s I had done during my lifetime. Lol! My doctor cooperated and dug them out of his files. Some of them were missing but they started in 1980 for me.

Jan, I workout at a gym for 75-80 minutes per day, 3 days per week. I use the machines with weights attached to build muscle all over my body. I have much better stamina and strength now. I am also climbing ladders and sanding and painting two side of my house this spring/summer. I get plenty of exercise…I also spend too much time sitting here with this laptop.

I eat an average of 130 carbs per day, and avoid most fast acting carbs. I am currently 3 pounds overweight, but I have insulin resistance and have to take a T2 med along with my insulin. I have good control of my BG’s and my A1c’s have been below 6.0 for almost 10 years.

Thanks for keeping us all updated. I find these studies extremely interesting and hope that they lead to some breakthroughs in diabetes. I’ve had Type 1 for 20 years now with no complications. If there isn’t a cure within the next 30 years, I hope I’ll be able to participate in a study like this one!