Oh wow. When I read that the mean age to be diagnosed as T1 is 14, I just assumed it to be a nice skewed gaussian distribution and diagnosis at older ages would be exceedingly rare. Probably because of my engineering background.
I believe that too. I have bean reading about a lot of futuristic treatments for diabetes. Many of them look promising (Stem cell research, Artificial pancreas, The City of Hope’s Diabetes and Metabolism Research Institute pledging that it would cure T1D in 6 years, etc.). As I’m young, hopefully, I will be able to have one of these treatments. If I don’t die with young with diabetic complications, that is!
I was 54 Talk about a curve-ball in middle age!
Our community was founded 10 years ago by @askmanny, whom I believe was 32 when he was diagnosed (after initially being misdiagnosed as a type2).
You might find this discussion interesting
Welcome Spacepirate! The majority of new-onset Type 1 diabetes is seen in adults, based on the stats from the US CDC, and then quite a few people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 and not included in the Type 1 stats (about 10% of “Type 2s” test positive for the autoantibodies indicative of Type 1). So new onset in one’s 50’s is not rare at all.
Guess I believed the myth that T1D is a childhood disease.
That is an interesting read. I believed the myth too. And my source is ADA.
The ADA website is not up-to-date on adult-onset Type 1 diabetes, and it still promotes the myth that Type 1 is a childhood disease. I am trying to change that, but ADA is a slow changer! [BTW, JDRF did change their website.] However, their book The Type 1 Diabetes Sourcebook (ADA/JDRF 2013) addresses the fact that the majority of new-onset Type 1 is seen in adults and that ~10% of “Type 2s” are autoantibody positive, have been misdiagnosed, and actually have Type 1 diabetes. And ADA’s scientific/clinical journals have long documented the prevalence of adult-onset Type 1 diabetes. Here is a blog that I wrote about the fact that most new-onset Type 1 is seen in adults. Time to bury the dangerous myth that Type 1 diabetes is a childhood disease, as misdiagnosis is very dangerous and can be deadly.
Thanks for that substantial documentation of a myth that refuses to die. I recently was in a GI doctors office and he asserted that my age 30 T1D diagnosis was unusual. I told him that that understanding was a myth. He didn’t take kindly to the correction. I wish I was better armed with a definitive citation at the tip of my tongue.
When we can’t get this reality straight with medical professionals, it’s no wonder that the myth continues.
Thank-you for your persistent work on this. I was lucky at the age of 30 to receive the correct diagnosis and immediately put on exogenous insulin.
Edited to add: The Medscape article you cite on your blog contains this startling symptom of a confused medical practitioner cohort:
And Dr Owen noted that in the United Kingdom even people who develop type 1 diabetes in childhood or adolescence are often recoded in their medical record as having type 2 when they become adults.
Thanks, Terry, it has been a lot of work to research adult-onset Type 1 diabetes; I started researching shortly after I was diagnosed with T1D at age 35, misdiagnosed at first, then discovered that my situation was not rare at all. Then I documented it, because whenever I would say that most Type 1 is diagnosed in adults, I would get challenged! Often quite vehemently! But “nevertheless, she persisted”!
But yes, it is a huge problem in that medical professionals are not aware. They are taught so little about Type 1 diabetes in medical school, and even the medical textbooks used today say that Type 1 does occur >30 years but is rare, which of course contradicts the scientific studies.
I have come in for more flak (some of it quite intense) than I can readily recount for comments about the deficiencies in medical training. It’s often interpreted, knee-jerk fashion, as criticism of doctors. It isn’t; it’s criticism of the way they are educated (or not educated), which leads to misconceptions and mistaken understandings, which lead to misdiagnoses, which . . . . you get the idea.
I think the reason these education gaps stick in my craw as they do is that these are the people who are, literally, the health care system, and who are supposed to know better. Grrrrr.
I was diagnosed with T1 January 2016 at 55. Can relate on what you are feeling. The denial and “why me” period are still present. Trying to learn and deal with the new reality. Some days are better than others. Thanks for sharing!
Hi Bev, I was diagnosed at the age of 62 (3 yrs ago this Sept) coming here was the best thing I could have done. Glad you found TuD also! Will never forget my first serious low late at night…very scary. I came here (while treating it of course) and went to the chat room. A couple of people helped me get through it a little more gracefully than I might have otherwise. The daunting learning curve one goes thru with this diagnosis is quite steep, however, it then becomes second nature the majority of the time. Yes, there are burn out days; there are roller coaster days; yet after learning what our bodies do as individuals, we are better equipped to handle the bad days. It’s important to also remember to keep on living…keep the things and people that bring us joy.
Welcome Spacepirate…an engineer will get through this in fine style!
My approach is more intuitive and my management is good to excellent. Nice to see you are regaining weight…it took me several months to get back to normal…which is thin like you. My diet is vegetarian, and has worked very well with T1. I have a pump - no cgm. What I do have is a glucose meter that communicates with the pump…the meter can be used to upload data. It is made by Bayer. I use the site that Medtronics provides for uploading. I find once every 2-4 weeks works well. Can run a variety of reports to track trends. The visuals actually make me remember exactly what was happening and give me information for making corrections. Recently made minor corrections to basal settings. So with all those words, if you can at least get a pump using meter like mine may make a difference. you won’t “love” it cuz you are an engineer, but it helps. Again, welcome the group.
I just find that training for a type 1 is horrible. I went to the recommend classes and yes they talked about carbs. I was the only type 1 in the class. There was no talk about insulin, or how to correct a high, no correction factor or sliding scale given. I was on my own until I finally asked the PA for something at my 6 month checkup.
I have been on this site reading a lot and that is how I have gotten through a lot.
Thank to everyone here
I’ve found that the most valuable lessons were those learned here combined with reading several books about how to use insulin. The real experts are those who live with diabetes 24/7. You will live with diabetes for the rest of your life so learning all you can is a worthwhile investment. You’ll be surprised at how fast your knowledge accumulates as you add a bit more information every day.
Greetings from the USA. If you can afford it I would get a pump. It has made a big difference in my life. Good luck
Oh Bev, don’t get me started! I was dx’d in Jan 2016 well into middle age with an A1c of 17.8. Clueless doesn’t begin to define how i was! I remember the nurses testing my bg & wondering why it was high. I said well, maybe it’s the slice of white bread, glob of mashed potatoes, fruit cup & juice you guys are feeding me! I bullied my dr into discharging me early because i knew even clueless, i could do a better job of managing T1D at home. Would you believe i learned how to test my sugar at 7:00am the morning after discharge by reading the little folded sheet in the glucometer box?! I kid you not. i received NO education! It’s a wonder i lived through that first night home LOL
Ok…deep breathing now…climbing down from the ledge Thanks for letting me vent
I only joined yesterday but when I googled TI, I was brought to this site and a post you write. I was so happy to read your posts and all the information you presented. I was on this site reading for two days and knew I had to be part of this!