Friday, April 27, 2012

The Joslin Medalist Study, 2005-2012

The Joslin Medalists are individuals who have received medals for having lived with type 1 diabetes for 50 or more years. These medalists have not only survived, but have avoided most of the more serious diabetes related complications. This group is a natural for a study that would seek the factors that explain the longevity and good health of so many type 1 diabetics in the US. If these factors can be determined then there might be a treatment devised that could help younger diabetics to also have long healthy lives. So the study began in 2005, and is headed by doctors George King and Hilary Keenan at the Joslin Diabetes Center in Boston.

A different Joslin study in 1981 found that, among people diagnosed with  type 1 between 1939 and 1959, only 48 percent of women and 34 percent of men were expected to live to age 55. Many of these individuals, however, lived on and were free of many of the complications that so often occur among people with diabetes.

An examination of the first 351 participants showed that 43% were free from any serious diabetic eye complications, 87% from kidney disease, 39% from nerve disease, and 52% from cardiovascular disease.

I participated in the study in December, 2010, at which time there had been approximately 500 participants.  I received many pages in the mail requesting information about my past. I supplied information about genetic, environmental, psychological and physiological factors of my first 64 years of living with type 1 diabetes. I was also asked to provide a listing of all my A1c's that had been determined. My doctor provided a list that began in early 1980 and concluded in late 2010. Some of the A1c's were missing from my doctor's files, but the list was accepted, with no problem. When I arrived at Joslin on the morning of my participation, I submitted my list and then went to a room where many blood samples were taken. A glucose tolerance test showed an increasing BG level for two hours. The fact that my BG steadily increased from the 90s to the 300s showed there was no insulin in my body that would lower my BG. Some participants had a decreasing BG during the second hour after the test. This suggested they were producing some of their own insulin. I was then examined for neuropathy, and taken to the eye center where a thorough examination of my eyes was given. Pictures were taken of the backs of my eyes. I received the results of my study several days later. There was mild neuropathy present, but no other complications were found.

For the first 500-600 medalists examined  "...about 40% did not have serious eye disease even after 50-80 years of type 1 diabetes and less than 10% of the Medalists have any kidney problems. From a complications point of view, these findings are very exciting since they showed that 40% of the Medalists have factors or genes, which are protecting the Medalists from developing diabetic eye disease." It was also shown that over 66 % of the medalists who had participated appeared to still produce some of their own insulin, even after 50 or more years of diabetes. Several participants had volunteered their bodies for study after death. Post-mortem studies confirmed that these individuals had been producing some insulin. It seems that many type 1 diabetes patients have protection from beta-cell destruction.  Cells containing insulin were found in all of the 19 pancreases willed to the Joslin study.

There was a meeting of more than 100 medalists at the Joslin Diabetes Center in June, 2011. My wife and I attended and we met many wonderful people. Doctors King and Keenan were the speakers that day.

“We are on the cusp of identifying protective factors for eye and kidney complications,” Dr. King declared. “We’ve made huge progress in the past year.”
It was announced that the number of cases of type 1 diabetes among children less than 6 years old was rising rather rapidly. This was very alarming to all of us. Let's hope that the Joslin Medalist Study will produce some significant findings that will help these children to live long, healthy and happy lives, without serious complications.

The study is funded by the Juvenile Diabetes Research Foundation, the National Institutes Of Health, and private donations.

My wife and I will attend the next medalist meeting in 2013. I am very anxious for that occasion.

The following links are the references for this blog:

Sunday, April 22, 2012


C-peptide was discovered in 1967. The first actual use of a C-peptide test was in 1972. In more recent times, C-peptide has been found to have an effect on microvascular blood flow and tissue health.

Type I diabetics typically have very low levels of C-peptide because most of their beta cells have been destroyed. This has been seen in the development of long-term complications such as peripheral and autonomic neuropathy. I have experienced both kinds of neuropathies, but neither type has proved to be particularly problematic after 66 years of type 1.

C-peptide has been shown to significantly improve nerve and kidney function. It has also been reported to have anti-inflammatory effects as well as aid repair of smooth muscle cells.

"Several physiological effects have been observed in several Phase 1 and exploratory Phase 2 studies in almost 300 type 1 diabetes patients, who lacked endogenous C-peptide. Improvements were seen on diabetic peripheral neuropathy, nephropathy and other decrements associated with long-term complications of type I diabetes. So far, dosing with C-peptide has shown to be safe and there were no effects of C-peptide demonstrated in healthy subjects (who make their own C-peptide)."

"Newly diagnosed diabetes patients often get their C-peptide levels measured as a means of distinguishing between type 1 diabetes, Maturity Onset Diabetes of the Young (MODY), Latent Autoimmune Diabetes of Adults (LADA) and type 2 diabetes."

The pancreas of a type 1 diabetic does not usually produce adequate insulin, so a decreased level of C-peptide is expected. Some secretion can still be present during the honeymoon stage for type 1 diabetics. C-peptide levels in type 2 diabetics are normal, or even higher than normal. Determining the amount of C-peptide in people who inject or pump synthetic insulin "can help to determine how much of their own natural insulin these patients are still producing, or if they produce any at all."

The results of a C-Peptide test can vary from lab to lab. So different labs may have different "normal" ranges. Doctors will sometimes evaluate your results based on your health and other factors. A C-Peptide value that falls outside the normal range may still be normal for you. The C-Peptide and blood glucose levels are measured at the same time to give a better evaluation.

A normal C-peptide level may be indicated as – Fasting: 0.51-2.72 nanograms per milliliter (ng/mL) or 0.17-0.90 nanomoles per liter (nmol/L)

The 725+ participants in the Joslin Medalist Study were tested for their C-Peptide levels. That test along with a glucose tolerance test showed that more than 66% of these long term diabetics do still produce some of their own insulin. My C-Peptide level was less than 0.1, showing that my good health after 66 years of diabetes has to be explained by factors other than insulin secretion.

"Persons with LADA typically have low, although sometimes moderate, levels of C-peptide as the disease progresses and high blood glucose levels.
The most common MODY syndrome may also have normal fasting C-peptide results because the flaw in this case is in the secretion of insulin in response to rising glucose and fasting secretion is still near normal. Their postprandial C-peptide however is below normal with elevated blood glucose.

Low levels of both C-peptide and blood glucose are found in liver disease, a severe infection, Addison’s disease, or insulin therapy."

I have believed for several years that C-Peptide present in the animal insulins I used for 50 years may have protected me against certain complications. It may help explain the longevity and good health of all the Joslin Medalists. Today's synthetic insulins do not contain any C-Peptide. I have experienced several minor complications since starting synthetic insulins, but none of them have been particularly problematic. I asked Dr. King, head of the Joslin Medalist Study, about this. He said he does not think that C-Peptide is a factor in explaining the longevity and good health of the medalists. Maybe he will have changed his mind when the study concludes.

The link below is my reference. It discusses C-Peptide in much more detail.

There is a company that has produced an injectable form of C-Peptide. Stage 2 trials have been held, and human subjects have been helped by these injections.

Monday, April 16, 2012

The Joslin Medalist Program

Dr. Eliott P.Joslin  "....most often referred to as 'EPJ' is considered the pioneer in diabetes. He was the first doctor in the U.S. to specialize in the disease, and this distinction is the one of many 'firsts' associated with him. Everyone who works in the diabetes field at some point learns about EPJ. What makes him unique is both his early interest in a little known disease and his vision as to how to treat it." The link below gives his story.

Dr. Joslin once stated, "If a diabetic with his disease can live longer than his neighbor of the same age without it, I consider that he has attained a distinction, and should be recognized as outstanding." The Joslin Diabetes Center in Boston awards medals to type 1 diabetics when they have completed 50 and 75 years with their diabetes. The first medal was for 25 years, and was awarded in 1948. Other 25 year medals were awarded, but it eventually became commonplace for people to live 25 years with type 1, so now there is a certificate awarded, but no medal. There are both certificates and medals awarded for 50 and 75 years. These medals are presented to type 1 diabetics all over the world. An 80-year medal is currently being designed, and the first recipient is expected to receive that medal in June, 2012.

Since 1970, several thousand 50-year medals have been awarded. There have  been 50 distinctive 75-year medals awarded for the  years 1996-2012. Medals have also been presented to type 1 diabetics in Australia, Brazil, Canada, England, Hungary, Japan, the Netherlands, Pakistan, the Philippines, Russia, South America, Spain, Sweden and Switzerland.

I was diagnosed in 1945 and was eligible for the 50 years medal in 1995, but I had never heard of the medalist program at that time. It was not until 2006 that I first heard of the program. I found information on my computer and thought I could not apply since proof of my date of diagnosis was required. My parents and the doctors from my early years had died, and the hospital does not keep patient information for more than 10 years. Then a medalist read my message online and sent me an email. She explained that I could have people who knew me from my very early years write letters, and that would be accepted as proof. The letters told things they remembered about my diabetes during those years. My sister and a first cousin sent letters to me, and I included the letters with my application. I received my medal in 2009, and will be eligible for the 75 year medal in 2020. My 50 year medal is shown below.

One of the most rewarding benefits of having the medal is getting to attend meetings with other medalists in Boston. It is so wonderful to be with other long term diabetics who have lived through the same experiences that I have had. The most recent meeting was in June, 2011. There were more than 100 medalists there that day. The picture shows the medalists at that meeting. I am the taller fellow in the middle of the back row. The younger people in the picture are doctors and others associated with Joslin.

I have met many long term type 1 diabetics in the online support groups, and on Facebook. I am pleased that I was able to make many people aware of the medalist program, and was able to help them with the application procedure. So many people have not heard of the Joslin medalist program. More should be done to advertise these medals, the application procedure, and the wonderful meetings that are held in Boston every two years.

Another benefit of being a medalist is that it makes them eligible to participate in the Joslin Medalist Study. The purpose of the study is to determine what factors make the medalists different. What has enabled these long term diabetics to live so many years with type 1 diabetes, and remain healthy with no serious complications? I will be blogging about the study in the near future.

Monday, April 9, 2012

My Diabetes Today vs The Early Years

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  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.

Thursday, April 5, 2012

Urine Sugar Testing, 1940s and Beyond

I was diagnosed in 1945, when I was 6. There was no blood testing device for home use at that time, so my father tested my urine every morning. That was the only test done each day. Benedict's solution was placed in a test tube and 8 drops of urine were added. The tube was placed into a tin can containing about two inches of water. The can was placed on a burner on the stove, and the water was boiled. The tube was then removed from the can, and the color was observed. The picture below shows the possible colors that might have been seen. The original color of the Benedict's solution was blue. If the color was still blue after the boiling, then there was 0% sugar in the urine. If the urine contained sugar then there was a progression f colors that could appear. Blue-green showed a trace of sugar. The higher sugar levels showed green, yellow, orange, and red. Red was the color I always hated to see because it represented very high blood sugar.

Urine testing was a very poor indication of the amount of sugar in the blood. I usually had a lot of urine sugar before breakfast. My doctor did not suggest testing urine sugar at any other time of day. We should have been given instructions to test my urine before each meal, but more frequent testing could have been misleading. If I did not pass any urine between breakfast and lunch,   there would still be sugar in my urine if the morning test showed a significant amount of sugar. The urine test would have shown high sugar, but the blood sugar might have been low due to the effect of the insulin taken that morning. There was usually very poor correlation between the amounts of sugar in the urine and the blood at any time of day. 

Later on there was a better way of testing urine, called CliniTest. It involved placing a tablet in a test tube containing water and urine. The mixture would fizzle and become very hot. Then the mixture would show some color. Comparison of the color with a chart provided the estimated amount of sugar in the urine. The picture below shows the apparatus used in performing the CliniTest procedure. 

No doctor ever told me about CliniTest, so I continued using the Benedicts solution and boiling the mixture on a stove. It was not until the mid 1980s that I bought my first glucose meter to test my blood. My diabetes management became so much easier, and more accurate, with the actual blood sugar levels being revealed several times each day.

Sunday, April 1, 2012

Falling Asleep While Driving

I worked at a supermarket to earn enough to pay for my tuition and college expenses. During my first year of employment there, on a Saturday night, it was my turn to stay after hours to help with the mopping detail. Every aisle had to be clean and bright before we went home. Being so tired from the day's work made the mopping very difficult for me. On my way home that evening I thought my strange feelings were due to my fatigue, but while making a right hand turn at the first intersection, I collapsed at the wheel. The next thing I knew my parents were standing over me and a crowd of men were behind them. Several cops were there too. My wheels were not straightened during that right hand turn due to my hypo and my car went off the road and down a steep embankment into a creek bed.
My car had passed between two vertical posts that were supporting a huge bill board. Some people were measuring the distance between the posts and the width of my car, and they said the opening was about two inches more than the width of the car. My car had passed between the posts, but did not touch either one of them. I was not hurt and the car did not have a scratch on it. The guys standing in back were from a bar across the road. They had seen my car leave the road and they found my parent's phone number in my wallet.

Everyone but my parents thought I was drunk. There had never been any alcohol in my life at any time. My parents told the cops about my diabetes. I don't think anyone there believed their explanation. There was no ticket though and a big wrecker pulled my car up the embankment later that night, or on Sunday. It was like the whole thing was just a bad dream. There were many hypos during my early years during my sleep or after a lot of exertion. There was no way for me to test my blood sugar before starting home that night.

Glucose monitors were not available until many years after that. My feelings and urine testing were my only clues to possible oncoming hypos. My parents thought that God had protected me and that was why I was not hurt. It was wonderful that my car was in good shape. I was 18 and in my freshman year at the college. I felt very lucky to be able to attend classes Monday morning.