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.
This is the most recent blog from my blogsite:
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.
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.
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.
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 !!
Good for you Sheila!!! Will I get to meet you at the Joslin medalist meet-up in Boston next year?
Would Love to meet you. Every year I try and get there but unfortunately finances are a problem. I will try again this year I would love to meet everyone. Like you, I am just constantly amazed how we keep going. I think a lot has to do with sheer determination, not letting diabetes "get-to-you".
Sheila, the medalists meet every two years. The next meeting will be in 2013.
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.
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.
Yes, a previous endo I had did not accept this, and that was one of the reasons I changed endos a couple of years ago. I know that I feel so much better if my SD is less but I have an A1c that's a little higher. Right now, my A1c is hovering in the mid to upper 7s. For me, that's about as good as I can do without serious hypos. But my SD has come down and I feel better overall (when I compare myself to about a year ago). And feeling better has to mean something, right?
If you take small steps and make gradual changes you can get your A1c below 6.5. That greatly decreases your having complications later on. I do agree that feeling better is very positive!
I was diagnosed in 1965, and had eye complications in late 1980's , also after getting in better control. I couldn't believe it when I was later told, yes, that often happens. Then why didn't they tell me to make improvements more slowly, as some suggest it's the drastic change to improved BG that triggers it. But my eyes are very stable now, and vision is 20/40.
I started on 1 shot / day of animal Lente, and didn't do MDI(NPH+R) until 1985, and pump in late 1990s. I started the pump with Regular, then later changed to Humalog, so I never used Lantus or Levemir.
I'm wondering if in 1945 you did multiple shots of Regular ? My understanding was Lente was first available in 1960's. They thought it was 'great' to have to do only one shot/day, but I wonder if doing multiple Regular had advantages, or if combinations were being used in 1960's. There was no way I could be anything but 200-400 all day with 1 shot of Lente each morning. I would eat cereal in the morning, minutes after injection of Lente.. I now need to wait 20-30 minutes for Humalog, and can still easily zoom up with white carbs !! On the other hand, for 20 years, it mostly felt like I didn't even have diabetes, and very fortunate to have never been in DKA or hospitalized since diagnosis. My Mom suspected I had a bladder infection, and took me to the doctors, where I was then directly sent to the hospital for IV fluids and insulin.