How can newly-diagnosed Type 1s be approached to be in studies? Once they are 10 weeks past diagnosis, the opportunity to study the progression of their disease goes away!

I am doing some research on this problem. I know that the family and the patient are in a state of shock with all that they must learn and process just to take care of the disease, but the patient still may have a few functioning islets. Researchers may be able to preserve them, or at least study their distruction to help find a cure or treatments. Once they have had Type 1 for 10 weeks, such studies are nearly impossible.

How might these families and patients be approached? What might work?

How could doctors and nurses be encouraged to suggest that they consider participating in studies?

If you have had diabetes for a while, what do you wish someone had told you at the outset that you found out later? What would have helped if you had known that information right after the diagnosis?

Any responses would be much appreciated.

I think many diabetics look back at the days, months and years leading up to their diagnosis and in hindsight realize that their medical team consisteted of a bunch of “Keystone Cops.” I think this happens with both type 1s and type 2s. If you arrive in the ER in DKA with a BS of 1000, it is just too d*mn late to ponder the progression. If you arrive at your doctors office with an “elevated” fasting number, at best you will be diagnosed as a T2 and told to go on your way. At worst, your doctor will tell you nothing and check it next year at your annual physical. Not exactly conducive to a study of the progression, let alone any efforts to slow the progression of onset.

So my suggestion. Educate medical professionals so that they are “competent” to diagnose diabetes. It is not unreasonable to spend a couple hundred $$$ on every diabetic who walks through the door with any marker for diabetes and get a proper diagnosis. I am talking a full panel, including a c-peptide and antibodies.

I was in a study for newly diagnosed T1s, tracking the honeymoon period. The study was for the first two years after diagnosis. I’m trying to recall what tests they did to confirm I was a T1 in my honeymoon period but I can’t honestly remember. I was invited to participate a good 3 months after my diagnosis.

I wish I had been referred to a more competent endocrinologist from the outset. I was a 20 year old military dependent “diagnosed” at a military clinic. Since I would no longer be a dependent at the age of 21, they decided there was nothing they could do for me. They gave me my medical records on the spot and told me to check myself into an emergency room. The hospital I checked myself into gave me a list of internal specialists and I had to make a blind decision on who to see.

I was lucky that the researcher who was conducting the study was actively searching for participants and got my contact info from the hospital records. I ended up under his care for the next twenty years. Those first few weeks and months, though, were the suck.

I understand your frustration. I had experienced a “complete physical,” including bloodwork, just two or three weeks before getting hit in the face with a pitch while batting in Little League. I went into the hospital for “overnight observation.” They told me the bad news the next day.

The best hope for finding a cure is to study those people who still have some islet cells, just not enough to have a “normal” blood sugar. We can test ways of stopping the progression. How can we get through all the shock and confusion to help these folks understand that the window of opportunity for study is very short and they must act? Obviously, getting the medical community to diagnose and recommend study participation is key, but how do we get the diabetic or the parent of one to act, in the midst of learning how to give shots, test blood sugars, etc.?

Can you name a couple of things that you wish someone had told you when you were diagnosed, that you learned much later?

Thank you for your response! Your tale appears to be very common. It seems as though the patients often know more about Type 1 in a short while than the doctors who treat them, unless the patients seek out someone who specializes in diabetes. How did the researcher convince you to participate, or were you easy to convince?

I was diagnosed with Type 1 two years ago at the age of 49. I was very interested in participating in any type of study of new Type 1s, but all were restricted to newly diagnosed people age 45 or younger. At the time, there were no studies which would accept a newly diagnosed Type 1 patient my age.
I was contacted by a Minimed rep the day after my diagnosis. Both my primary care physician and endocrinologist recommende Minimed, and I was so focused on trying to adjust to hypos, meals, and boluses that I did not research pumps. While I really like my Paradigm pump, I wish I had realized that a tubeless pump is available.

The nurse practioner from the study who contacted me told me that my initial hospital stay, tests, supplies, medication, and any costs associated with the study would be covered by the research for the next two years. There wasn’t much convincing to do after that.

The nurse practitioner was supposed to be the only contact person and she was supposed to work closely with my existing Diabetes care team. They were really supposed to be just running tests and tracking the progress of my Diabetes. After about a month,though, she took me aside and explained that she was about to commit a serious violation by strongly suggesting that I seek a more competent doctor and team, preferably an endocrinologist specializing in diabetes management. Up until that time, I had only talked to my doctor and had been on oral medication. The care was atrocious.

So, a couple of months into the study, I met with the P.I. and came under his care. He put me on insulin immediately, with all the training etc covered by the study grant. I’ve been using, pretty much, the same team ever since except for the endocrinologist who retired a few years back. I’m still a subject at the research clinic he founded.

  1. When the docs insist you’re Type 2 b/c of your age, there’s really no way to get into a study before that 10-week period. Most of the time it takes longer to wear down the doc and finally test you for T1.

  2. The thought that after the 10-week period all of a T1’s islet cells disappear is whack. I was diagnosed 3 years ago, and I haven’t gone about ~275 since I got on a basal/bolus regimen. I have had some serious binges which should have shot me through the roof and have had bad insulin issues, but never did I even see a 300-something reading. I’m thoroughly convinced I still have a decent (relatively speaking) amount of insulin production, but the researchers wouldn’t have me.

You produce islet cells throughout your life, even if you have had T1 for 50 years like me. I understand that your stem cells in the pancreas keep producing islet cells, and you keep destroying them. Analysis of cadavers of 50±year diabetics show us that - there were still stem cells and islet cells in the pancreas! The most promising studies involve T1s that are newly-diagnosed, where there may be a way to stop and maybe reverse the destruction. In any case, these are the patients who are needed for critical studies. How can we convince them to participate? How can we convince their docs of the importance of participating quickly?

As I’m sure you know, much of what goes on with blood sugars is a mystery. You can do exactly the same thing for two days (food, exercise, dosing, emotions) and get very different blood sugars. If you don’t like or believe what your doc says, have you ever asked for a second opinion?

about a month and a half after i was diagnosed, about two years ago, i went into my honeymoon period, and for about a month i didn’t take any insulin except for a couple units of lantus a day. now granted, i was eager to learn as much as i could about diabetes, and readily absorbed all the information my amazing endo’s office gave me, but had i been approached by any medical researcher about joining a study that might have significantly prolonged my honeymoon period, i would have eagerly joined.

Chris, you answered your own question.
T1s who are middle age or old age are thought to be T2 immediately by the internists/family doctors/nurses, so they won’t encourage these patients to immediately join studies for T1s. The only T1s who could be studied would be children/adolescents.
Newspaper and media ads letting the public generally know that people are being diagnosed as T2s who are middle age and elderly but are really T1s, are needed. Furthermore, media ads letting the public know about studies, where they are, what the contact phone is, etc., would be needed. In other words, target the public so they know before they’re diagnosed with T2.
When the public generally knows this diagnosis of T1 is happening everyday to older people and that tests are needed immediately, it might bring awareness. Then when a T2 diagnosis is given them, the patient himself, will insist on tests immediately & recognize the possibility of joining studies.
I think the time lag for teaching physicians/nurses is much too long to ever think we will have a generation of professionals current on diabetes in my lifetime.

Media is expensive, especially enough media to make people aware, especially people who have no connection to diabetes when they see the media ad. I was hoping there would be a way to work with endocrinologists to get the patients very soon after diagnosis. Thousands are not needed. Recently-diagnosed Type 1s are few and far between. A media blitz to reach about 2 million T1s nationwide, with very few of them recently-diagnosed, feels a little like taking a huge mallet to kill an ant. There has to be a better way. In any case, thank you for your response!

If you are a Type 1, what would you have preferred someone tell you recently after diagnosis that they did not tell you? What would have been helpful to know right away that you found out much later?

This is one aspect of the research that needs patients to volunteer: extending the honeymoon period, perhaps indefinitely? How could we have approached you, if not through your medical support team?

What do you know now that you wish someone had told you back when you were diagnosed? What would have been helpful?

I am another LADA who was diagnosed at age 53. 3 years later I’m still in my honeymoon, producing plenty of my own insulin. I do take insulin when I eat more than 20 grams of carbs at a meal, but can manage just fine on a low carb diet and exercise. I would have loved to be in a study, but they don’t take us older folks. I had to do all my own research and educate my providers, including my endo who says she learns more from me than I do from her.

Your tale about the endo appears to be fairly common. It sounds as though she listens to you, which is a positive sign. When you think about it, wouldn’t we all like to learn enough to know a lot about our own brand of diabetes?

What do you know now that you wish you had been told right away?

I had frustration in this area. I discovered a T1 study in Ft. Worth - near enough to our home - that was open to patients dx within the previous 90 days, I believe it was. We were at day 110, and she was ineligible.

Logic tells me that the number of functioning islet cells is NOT related to day of dx. In my daughter’s case, she was dx during a routine well check. At that time, she was only at 300 and was barely showing any signs of D. She could have been dx one month later in extreme DKA, but still have been eligible for the research study. As others have said, because of denial, medical insurance, mmisdiagnosis, etc., not everyone is dx in the same progression of their diesease.

I believe there is a test the indicates how actively the body is in producing its own insulin. If I am correct, THAT would be the way to screen patients for participation in the study - how efficient are their remaining islet cells?

That said, I have not answered your question, Chris. I think that most of us, at least the T1s, are hospitalized upon dx. It would be nice if the staff at the hospital or the CDE was aware of possible studies. At Dell Children’s in Austin, the D patients are in their own area with the same nursing staff day after day, plus a handful of CDEs. In addition, our endo does rounds at the hospital every day. She, too, could have been a source of info.

It is frustrating to barely get on your feet with this disease and then discover that some doors are already closed. God forbid my other child should be dx, but we’ll be in the car on our way to Ft. Worth before you can say Humalog if that happens.

I replied above, so I apologize if this is repetitive. I was diagnosed with Type 1 (not LADA) two years agos at age 49. Unlike some others, I was not misdiagnosed. Within 3 weeks, I had my first visit with my endocrinologist, who was also diagnosed with Type 1 as an adult. Both my primary care doctor and my endo were very knowledgeable. I asked about studies of newly diagnosed Type 1s. I also searched online. While there were many studies available for newly diagnosed Type 1s, none would accept participants over the age of 45. For many of the studies, the upper age limit was much younger. So, in my case, the problem was not that I was unable to learn about the studies or unwilling to participate. The problem was with the guidelines of the studies themselves. When I was diagnosed, I was very surprise at the lack of information available for, and quite honestly even the acknowledgement of middle aged adults diagnosed with Type 1. Yet we do exist. Kind of like the elephant in the middle of the room.

I understand your frustration. I am not a medical professional and do not have the answers to your questions, I have just had the disease for 50 years. If I were to guess, they have to set a benchmark somewhere that is easy for the docs and nurses to know who might qualify, so they pick 10 weeks or so. The researchers might argue that everyone at that point would be helpful in the study, whereas later, you might go through a lot of trouble to find out you don’t meet their criteria. I understand your comment about possibly being diagnosed a month later. I know it is frustrating.

How should someone approach you in the hospital, with all that is going on? Would it be critical for the nurses and/or doctors to be well enough informed to approach you? How could we help them?

What have you learned since the early days that you wish someone had told you then?

Thank you for your response! By the way, there is a test available to detect the antibodies in your blood, your husband’s, your other children. This test can predict whether diabetes may be in someone’s future. If you have other children, or if you want to be tested yourself, have that test done. It is NOT a fingerstick, they must draw the blood. By the time you show up positive on a fingerstick, you are diabetic. As I understand it, the destruction of the islet cells may take place for months or years before you have high blood sugars. The evidence of that destruction can be found in your blood up to ten years before you would be diagnosed. Close relatives to a Type 1 can be tested. This program, if it is still available, was called Trial Net. Some people would rather not know it’s coming. However, there may be interventions once the antibodies are detected. A friend of mine showed evidence of the antibodies, did the interventions (things like taking fish oil, taking alpha lipoic acid, etc.), and has not yet become diabetic, six years later!

I have listened to a Pediatric Endo , who works at a Children’s Hospital, here in Canada ; when ever he is a Speaker at Educational events , he mentions the Type 1 Trialnet studies . I have learned about these studies, while attending Canadian Diabetes Association’s Annual General meetings and visiting the Expo’s …Yes, too late for me to learn about personally participating, however as PWD we just may have a chance to mention these trials to parents of newly diagnosed children and adults , that we come in contact with .
I thought some of the trials will include within 100 days of diagnosis ??
Mentioning your question on Facebook worthwhile ?
Encourage Health Team members to share this by contacting their Associations ?

I got a big 'ol heap of info in the hospital - a lot of which I did not want (well, I didn’t WANT any of it). Info about a research study would just be another component. My endo does participate in Trail Net, but about a month ago, I was told that the approval for the study hadn’t been renewed yet, so my younger child could not be tested.