Enough ignorance to go around

Okay, deanusa… Here’s a few links: It’s called the Joslin’s Medalists Study.

https://forum.tudiabetes.org/topics/discussion-with-dr-king-of
https://forum.tudiabetes.org/topics/two-studies-of-long-term
https://forum.tudiabetes.org/topics/the-joslin-medalist-study-will
https://forum.tudiabetes.org/topics/joslin-medalist-study-update
https://forum.tudiabetes.org/topics/joslin-50year-medalists-give
https://forum.tudiabetes.org/topics/the-most-recent-report-from
https://forum.tudiabetes.org/topics/cpeptide-helps-prevent

You can search “Joslin Medalist Study” in the search bar, under forum discussions, and there are lots and lots of links… Mostly from Richard157. The study might still go on till April 2011, or even beyond, it seems.

We’re all “different”, eh? Each in our own unique way.

I hope I do better than my HbA1C predicts, too. Yow!!!

But I’m working hard to bring it down, just in case.

but, but I’m special! LOL!

As for that HbA1c You can do it! I did (after a year of being 8.2 then time b/f last 8.9) I got it down to 7.0. After 37 years of this crap I’m glad to see something that runs almost right! (well for me anyway) LOL!

thank you. lol i should have asked richard also. he has been a great fount of info.

there were are some interesting things in the post articles posted by richard. which for some reason i had not noticed before while reading them.

"Genetic studies are underway to determine whether these extraordinary survivors have typical type 1 diabetes or a different, yet unknown type of diabetes. "

hmmm. thats a good news bad news thing

"The results showed that as a group, Medalists have controlled their blood glucose levels very well for many years. In addition, hemoglobin A1c, a measure of chronic glucose control, does not seem to correlate with the various complications described above. "

i couldnt find anything relating to when the good control started or what the definition of good control is. the a1c is a personal number. i have found that going into the 5 s is not good for me. having lived in a time with no number i do believe we need it. but it just cant be the judge the jury and the executioner. and of course i like the quote because it highlights what i think so im hardly unbiased!

“The risk of complications for the eyes, kidney and nervous system is mainly related to glucose control for the non-Medalist diabetic patients. Thus, the type of diabetes is not so critical but the glucose control after getting diabetes is very important.”

and from richard

“Many of them have not had a history of good diabetes care. I ran very high blood sugar for most of my life, until modern times, but I do not have complications. I gather that most of the Medalists have a similar history. There was no guide to good diabetes control during most of their lifetimes. It seems clear that there has to be some explanation for their success stories.”

that seems to be contradictory?as others have stated and i think richard is correct in assuming that others for that time did not have good control by today s bench marks.
lol once a month blood testing was a pretty crappy way of controlling your diabetes!
the one thing i wish is that there was a “way” for us all to control instead of it being a ymmv thing.

For me, it’s those graphs! I would much rather be on the part of the graph with lower risk. Your number can still come up at the lower A1C ranges but your odds are much better. Even though you could get hit by a truck anyway, I would still prefer to stack as much in my favor as I can?

Ron Shandler’s Baseball Forecaster has a lot of interesting stuff that sort of looks at baseball that way, with odds and percentages that can differ from traditional baseball statistics that are flawed in many ways. I agree that there are also flaws with both BG testing (inaccurate meters) and A1C (snapshot of long time, skewable with agressive lows/ highs?) but as part of a bigger picture of health, that’s what we will have until they develop a robot to follow me around and keep track of what I eat.

Diabetes, Deanusa, IS a ydmv type of thing. I am type one diabetes 43 years and I have no major complications. I do not know why,other than grace and mercy of God.

I too, never had any home blood glucose testing nor glucometers prior to the DCCT in 1992, In the 80"s insurance would not pay for them, and they were VERY expensive and very big, like the sizreof a “C” encylopedia. I took one NPHshot a day from 1967 until 1993… and was not on true MDI until around 1999-1998. Went on a pump in 2003…I did have pretty good doctors and medical care, but have NO Idea what my a1c was from 1967 to 1992. I think it was tested in the 1980’s but I frankly do not remember the outcomes. I do not recall any of my medical professionals making a big deal about it, so I guess I was ok. I was young and active and pretty healthy outside of my iron-deficiency anemia, and bi-polar II ( now that’s another story, it bothered me 10x more than the diabetes ever didi!!!) and never had hypounawareness episodes and only in DKA once when I was hospitalized for Pnuemonia in 1981. From the late 1990’s on I have hovered in the low to mid 7’s a1c’s( both pre and ppost pump), but have been as low as 5.7 if I am being really diligent and mindful of not going too low, too often… Around 6.5 now and I want it just a bit lower, say 6-0 to 6.2.



All this is to relate is that diabetes is SO VERY individual that we just cannot say why some people get complications and why some do not… I believe, that in addition to help from the above and good genetics, that the c-peptides in the old animal insulins( beef/pork) we took for such a long time may have had some protective value against complications. I may be wrong, but Richard has links to that info as well.



Hope this helps.



God bless,

Brunetta

I did not start getting any sort of “control”…until the early 2000. I always used to eat whatever I wanted. I did one shot a day for the past 40 years. I used to mix the NPH with about 10 units of “quick acting” insulin…“regular” insulin. I know by evening time I was running on “empty” but still ate dinner etc. And never did another shot. I am not proud of the fact that I didn’t conform to a good diet and a good exercise regimen. I honestly do not know why I am still around and complication free. ? Is it genes ? I used to drink alcohol - not too excess - and I used to have the morning “lows” and just treated them. I always only had my body telling me low symptoms and I used to eat something sweet, drink OJ or something. My “low” symptoms always used to wake me up at night and I would treat. Back in those days, we never had anything else to go on. I vaguely remember my mother teaching me what it felt like to be “low” by witholding food and letting me purposely go “low” so I would recognise the feelings. ? Wasn’t that slightly “barbaric”…??? Equally so they let me eat candy and withheld insulin so I would know what the symptoms of “high” felt like.
I am so glad that we have survived, obviusly, but there is always that nagging question “why” ??? Is it faith? or luck? or a higher power telling us we have a purpose in this life? Or just good old genes ??
No-one else in my family has diabetes, so no-one else to compare “genes” to !!!
Sheila

I definitely got into habits of timing meals so I would run low at mealtime, eat to catch up and then go up and down and up and down all day. It was a lot of work and while I had decent results most of the time, enough to suprise some docs who were very skeptical of my sketchy medical history, I spent a lot of time either zonked out of my gourd, recovering from being zonked out of my gourd, on my way to being zonked out of my gourd or mysteriously not zonked out of my gourd but being somewhat apprehensive the next time would turn up soon enough anyway.



I don’t think that it’s too barbaric to test drive a low under controlled conditions. I recall once in high school, when I hadn’t had that many problems, that I decided I needed some ice cream for a low (this after the OJ, of course…) but it was too frozen so I figured the broiler would thaw it out quickly except the phone rang and while blathering I smelled the carton on fire. Ooops! Fortunately, no one noticed or I explained it as ‘burnt some toast’ or something like that?

I am always amazed by survival too although I am pretty devoid of faith and have this charming tattoo:




listening to you all talk here is a wonderful thing!! the emotions and the humor!

concerning the c pep its confusing to me because are we saying it was enough back then to protect us even now? its been many years since anyone had any.

im very appreciative of those of you who willingly share the bad with the good.

For me it is an eye-opener to hear the stories from the old-timers about what it was like in the past.

I have diabetes genes so it was always a question of ‘when’ my D-number would come up, never ‘if’. I remember being a child in the late 1970s/early 1980s watching my T2 grannies dipping sticks into their urine and thinking diabetes management was mainly about not eating sugar - but then dying an early death from kidney failure anyway. We were all so ignorant then - but then we didn’t really know any better did we?

The good thing about ignorance is, it’s curable. :slight_smile:

Well, well, well! Dean, I see you have finally tapped into the site where there are people who do their research and make so many well informed and intelligent replies! TuD is the best place on the web for this kind of conversation. That other site, where we have known each other for a long time, may have more than twice as many members, but this one is vastly superior in many respects!

The Joslin Medalist study has been going for several years. It is being funded by the JDRF and the NIH. They have now received the necessary funds for extending the Study for a few more years. I asked about that on Facebook, in the Joslin Diabetes section. A Joslin rep responded. You can ask questions there too. I get much good information from Facebook. There is much more there than you might think, but you have to look for it.

The person in charge of my participation in the Joslin Study, in 2009, told me that there had been more than 500 participants at that time. Some of them admitted that they had not taken good care of themselves, but they did not have any serious complications. Some DID have complications, but nothing especially bad. The group mentioned here was very small though. A few exceptions to the rule does not imply that we should just eat whatever we want and let luck carry us through with good health.

I had no complications during my first 55 years (1945-2000). I had stopped using the animal insulins with the C-Peptide in the late 1990s and I was diagnosed with mild retinopathy and neuropathy. The little spots of retinopathy would appear and, two months later, they were gone. It was a “now you see it, and now you don’t” problem. It never progressed very much, but it was there. My neuropathy was worse. It appeared in one toe on my left foot and and on the side of the same foot. I did not have any neuropathy elsewhere. The pain was so bad some nights that I lost a lot of sleep. It felt like surges of electrical shock running through that toe. I actually thought about having the toe amputated. Then I started pumping in June, 2007. A few months later my range was in the interval 70-130, 90% of the time. that is my comfort range and it is still that way. The neuropathy and retinopathy symptoms disappeared. Tests still show I have neuropathy, but I do not feel it anymore. That is why I still called myself complication-free at that time.

In my book I gave a lot of credit to the C-Peptide in my early years. Pumping gave me tighter control and essentially compensated for the lack of C-Peptide in the synthetic insulin (Humalog) that I have used since that time. The C-Peptide must have protected me. Look at my A1c’s 1980-2010:

https://forum.tudiabetes.org/topics/my-a1c-history

My A1c’s in my early years were not good, but there were no complications. Then my A1c’s were great at the turn of the century, but I had complications. How else would you explain that? I will always think it was the C-Peptide that protected me from 1945-2000. Many people still use pork insulin. It is sold in Canada and in some European countries, however, I have heard that the C-Peptide has been removed. Too bad!!

There are many doctors who tell their diabetes patients that if they can avoid complications for their first 20 years, and they continue taking good care of themselves, then they are unlikely to ever have complications. I think that is only partially true. I had no complications for 55 years and then had the retinopathy and neuropathy, even though my A1c’s were below 6.0. Was I was an exception to the 20-year rule? I don’t have much confidence in that rule. I had to work very hard with my pumping to get rid of those complications, and the neuropathy is still present, but no more pain.

The Joslin Medalist Study hopes to find the reason why the participants have no serious complications after 50+ years of type 1. If the factor(s) resulting in their good health can be found, then they might find a treatment that will help prevent complications and extend the lives of younger type 1 diabetics. I have talked to Dr. King, the doctor in charge of the Study. He is optimistic that very important results will be found. 750 participants were supposed to have been examined by April of this year, but the Study is ongoing. Let’s keep our fingers crossed that the conclusion of the Study will reveal some very significant results.

Great post Richard. I always prefer science to politics and emotions. Our other favorite site does have too much of the latter. Your evidence for carb reduced diet is air tight. The suspicion that C-peptide may be essential is also strong. If this is true then it is tragic that we are deprived of it. I will ask the Doctor if he is willing to prescribe a test I will try to do it non fasting and with no bolus insulin to hinder my pancreas from producing if it still does. If it doesn’t I will try harder to maintain BG in a normal range maybe even go Dr.B all the way. I do not understand the ADA 60% carb diet and cannot see how you can maintain normal BG doing that. Hope the JDRF study comes up with something.

lol! thank you so very much sir. yea i appreciate not being" linked" and “lectured” to death here. the other site has become to high and mighty and just wants to argue with everyone. real people with real problems are ignored in favored of debating the politics of school lunches. and to many people have “advice” on things they have never had and never will. lol but im 110% guilty of partaking in and starting emotional talks!

so it could be a combination of the c pep and making it past 20 yrs? 50 yrs with using c pep cant be argued with.and whats interesting about that is with it could we have more room to play with in our care?
i did notice your a1cs from that time and i suspect that was me or more than likely i was worse.
also i note that a lot of us here and other places and from the study were not “perfect” yet nothing is wrong. but we all are doing more care wise than before. i have to give credence to the c pep.

thanks very much much richard.

Here we want to inform not lecture. There’s no reason for anyone to be judgemental here b/c as most of us oldies know somewhere, sometime every diabetic messes up!

I haven’t really experienced any ignorance (knock on wood). Diagnosed in August 2010, I don’t really go many places but with my family and friends so I don’t get many looks because I try not to cause any attention or I try to hide it.

There was one time I was at a McDonald’s with some friends and I was at the table checking my blood sugar and an old man walked by and said “are you diabetic?” I said yes and then he said I know how that feels. then the rest of the time we were there he was reallllllly annoying. He was just asking questions like when I was diagnosed and just random stuff about diabetes. I was going to say something, but he finally shut up then we left

I think that she’s responding to the original post which seemed to imply that someone was “ignorant” although, at least to me, the antecedant was a bit murky so I tried to ignore what could perhaps have been construed as negativity? I do wonder though about someone who’s not paid any attention to their control for almost as long as I’ve been alive however it’s not my problem and, given the murkiness of the original post or posts, I was not quite sure to what I’d be responding?