My Diabetes Now vs My Early Years

Type 1 and LADA
1

From the year of my diagnosis in 1945, until the mid 1990s, I did not need any medications, and there were no diabetes related complications. That was approximately 50 years with no problems. How was that possible? Beef and pork insulins did very well for me, although common sense suggests my blood sugar must have been very high most of the time. The urine tests every morning showed very high blood sugar on most days. There was only one urine test each day until Tes-tape for easier urine testing was introduced a few decades after my diagnosis. There was no basal and bolus control, and no involvement of carbs in my daily routine. My meals consisted of hundreds of carbs, and there was no information about my needing to limit my intake of any foods, except those containing sugar. My doctors had very little advice for me. Despite all these factors, there were no diabetes problems. There may have been DKA on many occasions, but I did not know about DKA until the present century. So how did I avoid complications for such a long time? I think it may have had something to do with the beef and pork insulins I used for all those years. Several online friends agree that the insulin we were using did seem to offer us protection from the complications to our eyes, kidneys and our nervous systems.

When I started using synthetic insulins in the mid 1990s, things were so different. I was aware of the involvement of carbs at that time, so my eating habits had changed. My carb intake was greatly reduced, and foods with fast acting carbs were restricted to smaller portions. I counted carbs and determined appropriate insulin:carb ratios. That, along with my basal and bolus insulins, resulted in my having A1c's below 6.0 soon after the start of the new century. My A1c's before the mid 1990s were much much higher.

In the late 1990s I needed medications for cholesterol, blood pressure, and water retention. I was also diagnosed with carpal tunnel and ulnar nerve problems. Frozen shoulders, cataracts, and some mild spots of neuropathy occurred during that time. Several years later I was diagnosed with neuropathy in my feet. All of these things occurred after I stopped the animal insulins, and started using the synthetic insulins that are still used at the present time. How can this be? We know so much more about diabetes now, and we have devices, insulins, and medications that can improve our control so much. Indeed, my control did improve very much, but those complications and the need for medications did occur. Don't you think it would have made more sense for me to have complications in my early years, when I had so much high blood sugar, and almost none of the present day knowledge?

There are doctors who have told their diabetes patients that if they can avoid complications during their first 20 years with diabetes, then they are not likely to have complications later on. My complications began about 50 years after my diagnosis, so am I an exception to the rule? I really cannot fully agree with that 20 years rule.

I am certainly not unique. There are a few thousand type 1 diabetics in the US who have lived with diabetes for at least 50 years, and without any serious complications. Some of them have been diabetics for 10 or more years longer than me, and they do not have any serious problems that are diabetes related.

There is a study taking place at the Joslin Diabetes Center, in Boston. It began in 2005, and is ongoing at the present time. I participated in the study in 2009. The purpose of the study is to determine the factors that have enabled so many long term type 1 diabetics to live so long, and be so healthy. Maybe the reason so many of us had no complications during our early years will be revealed.

My having some mild complications in the 1990s, and not earlier, is still a mystery to me. Now, in the year 2012, I have no symptoms of any complications that really bother me. Some mild arthritis, some dizziness in the mornings, and occasional symptoms of neuropathy are all that are present now. I am so fortunate to be doing so well, but I will always be curious about how it has all evolved.

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This is the most recent blog from my blogsite:

http://www.almo0157.blogspot.com

2

I have had a similar experience. I was diagnosed (as a tween) in 1962. Beef and pork insulin were the only options. No blood testing at home, no HbA1cs, no pumps, GLASS syringes, for pete's sake! High BGs? I have no data, but am pretty sure I was off the charts until 2001. I just took the twice a day dose of Lente or NPH and went about life. Never saw an endo. Had my first A1C in 2001, and it was over 8, so I started to pay attention. What a life changing experience. (I so hate it!!!!)

(I would also interject that over 50 years of type 1 diabetes, the only complications I have had is retinopathy--excelerated quickly, but controlled by a FANTASTIC doctor.)

Life is now controlled by diabetes--testing, changing pump stuff and CGMs, preparations for travel (let alone international travel which now includes a HANDS ON BODY SEARCH), making sure I am prepped for lows at all times, staying awwake all night (in 15 minute intervals) because I cannot get my glucose over my present low number)(70 on the pump,) worry about how all this affects me mentally (not good, I am afraid) and most of all how it affects my wonderful husband.

I have also begun to take cholestral, thyroid, prilosic, as well as OTC such as aspirin. Was it better in the old days? Maybe I would have lived a shorter life, but maybe the end would be more fun.

Synthetic insulin? More tech? Who knows, Richard.

3

I think it's a little unfair for those who have been around for 30/40/50/60/70 years to count their experiences as typical. I think we're probably tending towards the exceptional.

I know in my hometown, two other juvenile diabetics slightly older than me but diagnosed maybe 10 years before me, died in their 20's, one with a couple of amputations. Heck, a big chunk of my "diabetes education" at my hometown hospital diagnosis consisted of being shown pictures of gangrenous limbs and amputated limbs.

A couple of years after I left for college, a high school age kid at my former high school died from T1 DKA before he was ever diagnosed. His mom was a well known nurse in town but she didn't see the signs before it was too late.

I was told every time I went to the eye doctor when I was a kid, to expect retinopathy real soon, because (and this was a quote from multiple opthamologists) "all diabetics have retinopathy within 10 years of diagnosis".

A couple of years after I graduated from college, a T1 student at my college died in her dorm room. Presumably a hypo or dead-in-bed or similar, but I don't know the exact details.

When I was diagnosed, "standard issue" to every juvenile diabetic was a little card explaining that if we're found wandering around or unconscious with ketotic breath, that we're not drunk, that we're really DKA and we have diabetes and we need help. This was de rigeur for carrying around 100% of the time everywhere.

All those things formed sort of my expectations for my life. Maybe they were not entirely typical, but they were a heck of a lot more common 30/40 years ago than they are today (and I'm still certain they're around today too just not at such a rate). I'm not trying to be a downer, but probably those of us who have gone 30/40/50/60/70 years and are still kicking, might be luckier or more exceptional rather than the norm, because the way I look at the statistics, I came out pretty dang lucky. I've had a couple of 911 calls/ambulance trips/ER visits for hypos but other than that I don't seem to be a lot worse for the wear. And the expectations for folks diagnosed today? The stuff we had back then looks like stone knives and bearskins. I get asked by younger docs and my insurance company all the time what my A1C was at diagnosis, and they look surprised when I explain that I wasn't diagnosed with an A1C, but by peeing on testape and having it turn jet black. I'm proud we were able to do so well with such primitive methods of regulation back then, but there's no way I'd ever want a newly diagnosed person to have to go without say home bg testing. Folks today have tools a zillion times better and few if any will go through the "typical" endings for juvenile diabetics in the 1950's/1960's/1970's.

4

Hi Richard! I tend to agree with u there. Although I've only had D for 38 yerars I seemed to do better b/f all the "new" things came out. The beef & pork insulin seemed to do me better than the synthetic kind. All this testing logging and such I didn't do til the mid 90's myself. I think that it's good in some ways and bad in other's.

5

Something happened to you besides the change in insulin. You got older.

6

LOL...that's a killer! I used to figure I wouldn't last until 40 so, @ 44, everything is GRAVY!

7

actually a fair comment that one. And now Richard you say you have no real complaints....so just how bad is synthetic insulin?

8

It is difficult to separate the person from the disease. When your problems started you were middle aged. Some of the troubles come from being older. It is difficult to point to they type of insulin, ( beef and pork insulins are still available btw )

It is a difficult study to perform since virtually all diabetics follow what ever is the standard care plan for the time. Who would volunteer to go back to injecting beef insulin with no testing just to prove a theory?

In order to prove that theory you would need two large groups to test it, one on current insulin and one on the beef or pork.

The reality is, that the complications of diabetes began just as insulin began being used.

You are an not usual. Most diabetics who were diagnosed in 1945 are dead. You must have something that is keeping you well. I wish someone could study you and others like you to find it out, I'm guessing it is genetic.

I am 25 years on Human insulin and I have no complications aside from a frozen shoulder that my non-diabetic brother also has. I'm therefore not sure it that it is a complication or not.

I know others who are only 10 years in and have had eye surgeries due to retinopathy.

9

I am exactly the same as you. My sentiments EXACTLY. I often ask myself "WHY"...??? for the first 50 years of my type 1 - I did exactly what you did. I am sure my blood sugars were constantly off the charts but we had no way of knowing.
All I can say is "AMAZING" and hope the next chapters of my life are uneventful!
Good luck to everybody out there with type 1 !!
Sheila
(58 years!!)

10

I don't know, there are so many people who died in those early days while using beef and pork insulins. I think you're really the exception, not the rule here. The mild complications you developed in the 1990s were likely due to the sudden change in BGs you experienced - it was around that time that you brought your BGs down into a more normal range, and this can cause some folks to develop complications.

It may just be that you have some sort of unique make-up that allows you to resist the damage that most people experience when their BGs are constantly high. Or it may be that while your BGs were high, they were consistently high so you didn't experience huge fluctuations, something that some believe can cause more damage.

The bottom line is that there's more to diabetes management than just a "good" A1C. Sometimes I think too much emphasis is placed on having a good A1C, and not enough emphasis is placed on things like BG fluctuations, exercise, diet, etc.

11

Spock, I agree with you. Life may have been more fun living the way we did back then as long as there were no complications. No worries, no fuss, just like a non diabetic....almost!

12

Tim, the doctor in charge of the study if long term type 1 diabetics told us that there is an estimated 2000 of us that have a natural protection against diabetes related complications. 2000 out of 3 million type 1 diabetics in the US is a very small amount. Maybe you and I are among them. They hope to determine the factors that have enabled us to live so long, without serious complications. Who knows where that discovery might lead us?

13

Yes Doris, I do agree!

14

Aw shucks, Lathump, you noticed, eh?

15

Tim, there is an ongoing study that began in 2005. 700+ long term type 1 diabetics with at least 50 years of type 1 behind them have participated. I participated in 2009. The study will conclude when they have 1000 participants. The purpose of the study is to determine the factors that have enabled us to live so long, and be so healthy. It is called the Joslin Medalist Study. You can research that for more details.

16

The Joslin medalists meet every two years in Boston. I attended in 2011, and will attend again in 2013. It feels so good to sit down with other long term type 1 diabetics and share stories.

17

Timmy, I had some years of frustration and mild complications that were very aggravating. It took a lot of work to get things under control. It was so much easier with the animal insulins. I feel that my life expectancy will be much better with synthetic insulins, but I was not thinking that way in the years 1995-2007. Starting pumping in 2007 is what turned things around.

18

Good for you Sheila!!! Will I get to meet you at the Joslin medalist meet-up in Boston next year?

19

Hi "busted", you have made some very good points. The measure of the amount of fluctuation in our BG's is called the standard deviation (SD). A good A1c, even below 6, accompanied by a large SD is not healthy. There was an article in the Diabetes Health magazine a year or so ago that said that situation can lead to diabetes complications, even when the A1c is very good.