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: