Friday, June 30, 2017

My Joslin Medalist Study Particiation

My Joslin Medalist Study Participation
A few weeks ago I received a letter from the Joslin Diabetes Center saying a smaller group of the previous participants were going to be tested again. They wanted to see some of us who had been tested at least five years ago, and determine how we are doing after that gap in time. My first participation at Joslin was December, 2009. I completed my second participation in the Joslin Medalist Study this week on Wednesday, June 28.
I fasted for ten hours before the testing began. I had not taken any bolus insulin during that ten hours. I entered the testing room at the Joslin Center at 7:30 AM. After several blood samples were taken I was told to suspend my pump so there was no basal insulin. Then I drank a big glass of a glucose mixture. After drinking the glucose my blood was tested every 30 minutes for the next two and a half hours. At that time it was 10 AM and my BG was 406. I felt very sick. Then I was told to take a correction bolus. The reason for the GTT ( Glucose Tolerance Test) is to see if there is any reduction in the blood glucose level during the 90 minutes after drinking the glucose mixture. Many participants did see their levels reduced during that time. This indicated some insulin was being produced within the participant's body. That did not happen with my GTT, my BG kept increasing, so I do not produce any of my own insulin.
My wife and I walked the halls and rested during the next ninety minutes, while waiting for my appointment at the eye center on the first floor of the building. The eye study began at 11:30 AM. My BG was still very high at that time, and I was not feeling good during the eye examination, but I don't think that influenced the outcome. This eye exam was much more thorough than the one given during my first medalist study participation in 2009. The results were great! The eye specialist told me that my eyes are amazingly good for someone who has been type 1 for 71 years.
I do have some bad neuropathy in my feet and legs, but my eyes, kidneys and heart are in good shape.
There were 1020 participants in the initial study (2005-2015). After the first 500+ participants had been tested, it was found that more than half of them were still producing some of their own insulin. Those individuals were producing only small amounts of insulin, but any amount might be helpful in helping to prevent diabetes complications. They are still insulin dependent, and type 1.
It has also been found that some medalists who were not producing insulin on the first visit, as shown by the glucose tolerance test, were then producing insulin during their second visit. This suggests that some of us have a "sporadic" or an "on again-off again" situation with insulin production. I was not producing insulin on either of my visits.
I am very grateful for having the opportunity to participate in the Joslin Medalist Study on both occasions. The study was free since it is part of the research being done at the Joslin Center. My hotel stay for the previous day was also paid by Joslin. It was an easy four drive from our home in Kingston, NY.
I applaud the Joslin Diabetes Center for doing this research. Dr. George King, head of the Study, hopes that the factors will be found that have enabled so many of us long term type 1 diabetics to avoid any serious diabetes related complications. Such a find might result in a treatment that would help younger type 1 people to live a long life without any serious complications.

Saturday, June 24, 2017

Participation, Joslin Medalist Study

I will be participating in the Joslin Medalist Study for the second time on June 28. There were 1020 participants in the initial study that ended in 2015. Now a smaller subgroup of those participants are invited to return for follow-up testing. The follow-up visit "will confirm the ongoing presence of the protective factors against diabetic complications and the ability for the body to continue making insulin." Those are the words from Dr. King, head of the Study. My testing in 2009 showed I was not producing any of my own insulin, but many of the medalists are producing a significant amount of insulin. They are insulin dependent, but the amount of insulin they are producing must certainly help explain why they have such good diabetes health after 50+ years of type 1. One interesting fact recently received from another medalist who has completed her follow-up visit is that some participants were not producing insulin during their first visit, but they were producing insulin during their second visit. That is why I will be having a GTT (Glucose Tolerance Test) and a C-peptide test for my second visit. If I am still not producing any insulin during my second visit, my good health must have some other explanation. I will get a very thorough examination, with many blood tests, heart exam, eye testing, etc. This is a free testing routine being done at one of the best diabetes centers in the world, and it will last about seven hours. I will receive a report of the results at home several days later.
The picture below is a seasons greetings card. Participants receive those cards each year in December. The picture shows some members of the Joslin Medalist research team. Third and fourth from the right are Drs. George King and Hillary Keenan, who head the study. The other people shown are doctors, researchers and staff members. Maya Khatri, second from the right, will oversee my study participation on Wednesday, June 28.
We are packing for our four hour drive to Boston. We will be meeting some of my Facebook friends while we are there.

Thursday, June 22, 2017

Joslin Medalists...Video

I recently posted that I attended the Joslin Medalist Meet-up in Boston in 2011 There were approximately 120 Medalists there, all of whom had been T1 for 50 years or more. One man there had been T1 for 84 years, and was 90 years old. Kerri Sparling was there as a guest, and she prepared this wonderful video after interviewing several of the medalists.

Sunday, June 18, 2017

Joslin Medalist Study....Part 2

In June, 2011 I attended a meeting of more than 100 medalists at the Joslin Diabetes Center. Drs. George King and Hillary Keenan head the Joslin Medalist Study. Dr. King presided over the meeting on Saturday, June 4, 2011.
The picture of the more than 100 medalists appears below. If you look in the back row, in the middle, at the guy standing taller than the rest, that is me. I am 6' 2" and towered over almost all other medalists. There are several younger people in the picture who are not diabetics. They are doctors and staff members who were attending. The following link gives some details about that meeting, and some things said by Dr. King.
There are common themes among the more than 650 people in the Joslin Diabetes Study. According to Dr. George King, Joslin’s research director, these survivors are typically:
* of Northern European ancestry, which tends to correlate with high socioeconomic status, high levels of education, and good health care and nutrition.
* nonsmokers.
* physically active.
* children of parents who took control of their diabetes when they were very young, and they continue to do a good job of keeping their blood sugars low and stable.
* children of parents who were long-lived — on average, 76-77 years.
* matter-of-fact about their diabetes: They see it as an annoyance, but not a curse.
* willing to participate in medical research about type 1 diabetes.
* have a pancreas that has continued to make insulin-producing beta cells.
These themes were flashing on the screen as we entered the auditorium where the meet-up was held. I satisfy every theme but the last one. My C-peptide numbers on three occasions show that I do not produce insulin. Many of us gave short talks during the meeting. When I spoke I pointed out the fact that I do not produce insulin, and concluded that there must be factors other than insulin producing beta cells that explain longevity and good health for some of us.
Some of the things I carried away with me are as follows:
** The number of cases of type 1 diabetes being diagnosed in children under six years of age is rapidly increasing.
** There are approximately 2000 type 1 diabetics in the US who have lived long and have the protection, to varying degrees, shown by the medalists being studied. There are roughly 2 million type 1 diabetics in our country, and I'm sure many of the millions of younger type 1 diabetics will become Joslin Medalists and will be found to have this protection too.
** The medalists have protection against complications in their eyes, kidneys, and their nervous system, however, this does not apply to their hearts. We were told to take very good care of our hearts.
"Clues to this protection may be found in analyses of a family of proteins called advanced glycation end products (AGEs), which are increased by high blood sugar levels. In the study, subjects who exhibited two specific AGEs were more than seven times as likely to have any complication. But this study also demonstrated for the first time that a combination of two other AGEs is associated with protection against eye disease."
Dr. King told us that these proteins, and many others as well, will be carefully examined in the next phase of the Medalist Study.

Saturday, June 17, 2017

Joslin Medalist Study...Part 1

There is a major research project going on in Boston called the Joslin Medalist Study. The Study began in 2005, and is now in its thirteenth year. Every participant in the Study has been a type 1 diabetic for 50 years, or more. I have been type 1 for 71 years, and participated in the Study in 2009. They hope to find the factors that have enabled us long term diabetics to live so long without any serious complications. If found, that could lead to a treatment that could be used by young type 1 diabetics, so they could have long, healthy lives, too. The Study is ongoing and is funded by JDRF and NIH.
I participated in the Study in 2009. It was very thorough, and detailed. During the days before my wife and I drove to Boston, I was required to fill out many pages in a report describing my background, and my physical condition. In December I turned in my written report, and was given a very thorough physical examination. Many blood samples were taken. The examination took almost seven hours, starting at 8 AM after fasting overnight. I was told to take my basal insulin, but no breakfast and no bolus insulin before the examination began. I was required to drink a large glass of a glucose mixture for a GTT (Glucose Tolerance Test). My blood sugar was then determined every 30 minutes for the next two hours. My BG reached a high in the 300's. I felt very sick since I had not seen a BG that high for many years. At that time I was allowed to take a correction bolus. Some participants showed a drop in their BG after two hours, showing that they still produce some of their own insulin. It was obvious that I was not producing any of my own insulin. A C-peptide test helped confirm my lack of insulin production. I was then given a very lengthy eye examination. It took until late afternoon for my BG to reach a normal level. We left the Center around 3 PM, and we had dinner early that evening. That was the first food I had eaten since the previous evening. We drove home the next day. I did receive a report giving the results of my examination. It was a good report, but it included my having some neuropathy in my feet. I had been previously diagnosed with neuropathy by my neurologist in Kingston, NY. No other significant findings were in the report.
In 2010 it was reported that some medalists still produce some of their own insulin. The following link gives the details:

Tuesday, June 13, 2017

Adult Onset Type 1 Diabetes

This article offers a very good discussion on Type 1 diabetes diagnosed in adults.

"....the medical community has been slow to recognize this, and Type 1 diabetics diagnosed as adults are still treated as abnormalities and frequently given inappropriate treatment for the disease they have. All too often, they are diagnosed with Type 2 diabetes, which is a fundamentally different disease not only clinically but genetically.... and the methods of treatment for the two diseases are also different. The misdiagnosis typically results in under-treatment, and causes needless suffering."

Sunday, June 11, 2017

Is Type 1 Diabetes Always Autoimmune?

I had always assumed that all T1 diabetics are autoimmune, but is that necessarily true? Have any of you diagnosed with T1 been given the GAD65 test for autoimmunity? I am not aware that I ever had that test, until last year. I asked my endocrinologist to have the test performed. I had that test last year, and I am autoimmune. My diabetes was diagnosed when I was recovering from chickenpox and mumps when I was 6 years old. Those diseases probably caused internal damage to my pancreas. I do not have any relatives who are/were T1, so I feel my T1 is not genetically induced.
Here is the link to the GAD65 test:
I have a Facebook friend with idiopathic diabetes, also known as Type 1b diabetes. "This form of type 1 diabetes is not autoimmune in nature, and tests for islet cell antibodies will come up negative. People with type 1b have an insulin deficiency and can experience ketoacidosis (a high blood sugar emergency), but their need for insulin injections typically waxes and wanes over time." My friend's blog about her type 1b diabetes appears below:

Wednesday, June 7, 2017

Good Health After 71 Years of Type 1, How Is That Possible?

In one of the diabetes support groups I was asked if I attribute my good health in my early years to my sugar free diet. My doctor, when I was diagnosed in 1945, told my parents that I should not eat anything sweetened with sugar. That was the only advice I had to follow for many many years. I was scared of sugar, and I followed that rule very carefully. We thought that as long as I avoided sugar, I would be fine! There was no mentioning of possible diabetes complications. There was no stress during those years, just aggravation with the lows I would have when I exercised too much, and the occasional seizures I had while sleeping. My mother prepared wonderful desserts sweetened with saccharin. I did not feel that I was missing out on anything important. I did eat a lot of food that had fast acting carbs, but I did not know that carbs had anything to do with diabetes until 1988. I think that avoiding sugar did help, but all the bread, milk, cereals, fruit and those desserts mother prepared were causing very high urine sugar. Those foods did not contain actual sugar, so we thought they were okay for me.
I did not have a meter to measure blood sugar until the mid 1980's. That was 40 years of not knowing my BS (blood sugar) numbers. I felt very good, and was very healthy, with no diabetes complications. In 1970 I saw my first doctor who was a diabetes specialist. I was given a blood sugar test when I arrived at his office building. They were able to do an in-office test on the blood sample without having any device like we have now. When I entered his office he told me my BS was very high, and he handed me a book. He told me to pay attention to a particular page. My visit with that doctor was no more than five minutes. I was out the door and leaving a big waiting room filled with patients. I sat in my car and looked at the page the doctor recommended. The page had two columns. On the left was the age at diagnosis, and on the right was the estimated age at death. My life expectancy was very alarming! That time was 24 years after diagnosis, and the book suggested I would die while in my 40's. I felt I had another 10 years to live, but maybe not much more than that. That was the first time that I was depressed because of my diabetes. I took the book home with me, and showed it to Anita, my wife. We had a long talk that evening. I was so healthy after 24 years of diabetes, and there was an estimated 10-20 years of life left for me? We had two boys at that time, one less than a year old, and the other 3 years old. I thought I might be leaving my young kids without a father, and my wife having to support them. I did not sleep much that night. My wife and I decided that that book was giving me false information. Given my very good health, it could not be true. I tossed the book, and never read the rest of its content. I think that there may have been other bad news in the book, possibly a discussion of the diabetes related complications. That would have made me even more depressed, so I am glad I tossed the book.
We moved from Virginia to New York that year, and I started teaching math at a community college. Life was great, and we loved New York. The book I tossed was of very little concern to me then, I had no worries about dying in my 40's. Well, maybe a little, but I did not discuss it with Anita anymore. We were making mortgage payments on our home, and I thought we should have mortgage insurance. A local insurance company had me see a doctor for an examination. He was a very old, retired doctor who saw people who wanted insurance with that company. The doctor told me to pee on a test strip in the office bathroom. The strip was a very dark green, almost black. That indicated very high urine sugar. I had been using strips of that tape for many years at home, and the dark green color appeared very frequently. The doctor said he could not approve me for the mortgage insurance. That decision was made based on one urine test. Really? So ridiculous! The doctor followed me to my car, parked in front of the building. He told me about a former patient who had very good health with diabetes, and then the following year he had terrible kidney problems and died. The doctor said that blindness and kidney problems happened with that patient in that year. He told me that I should prepare my will ASAP. He knew I had a wife and kids, so I suppose he was actually giving me good advice. I told Anita about my day, and we did not let it bother us very much. The earlier experience with the previous doctor made coping with this situation much easier. The next day I visited the local office of Metropolitan Life insurance. They got word from my local doctor, and realized I was in good health, with no diabetes problems. My mortgage insurance was approved. Our mortgage was paid off in 1995, and I was still healthy, with no complications.
I have often wished that I had not seen the doctor in Virginia, and that Metropolitan was the only insurance company that I asked for mortgage insurance. Things would have been so much better!!
Now I am 77 years old, with 71 years of type 1. I have some neuropathy, and my neurologist says it is severe. I feel some numbness in my feet and legs, but very little pain. I do not need any medication, so I do not think it can be severe. A misdiagnosis? I take long walks and workout at a gym, with no problems. I do not consider my neuropathy to be a significamt problem. I do not have any other diabetes complications.
So what has caused me to live so long, and have such good health? I do think good genes has a lot do with my good health. There are many long term type 1 people like me with good health. Some of them have lived 75-80 years with type 1, and they are in very good shape. Most of the 1000 participants in the Joslin Medalist Study have been found to have good health after 50+ years with type 1. I attended a Joslin Medalist meeting in Boston in 2011. Dr. King, head of the Study, announced that many of us have a special inner protection that helps prevent problems with our eyes, kidneys and nervous system. He also said that our hearts are not protected in that way, and that we should be very careful with our hearts. I had a nuclear stress test a few months ago, and my heart is in great shape. Will this last for many more years? Dr. King and his research team are still looking for the source(s) of that special protection that so many of us, and so many of you have. If the source is found, maybe it will provide some kind of treatment that will prolong the lives of young type 1 diabetics, and enable them to live long healthy lives. 

Monday, June 5, 2017

Joslin Diabetes Medals

The Joslin Diabetes Center offers medals to people with type 1 diabetes who have completed 50, 75 and 80 years. There is also a certificate for 25 years.
Here is the link for applying for these medals. A printable form of the application appears on the link page.

Lilly Diabetes Medals

Lilly Diabetes offers medals for completing 10, 25, 50 and 75 years of Type 1. The program is called "The Lilly Journey Awards". The link below gives access to the form for applying for these medals.

Friday, June 2, 2017

Banting House in London, Ontario

Here we have Michael Hoskins on, giving a wonderful report about his visit to the Banting House in London, Ontario. This report is a well done description of the interior of the Banting House, with many very interesting tidbits about Dr. Banting's past. The pictures are great. Thanks, Michael!!