I was diagnosed in Jan. 1983 at age 42 1/2 ; put on insulin next March ...the norm then was one shot daily ...I recall the summer of 1983 , vacationing to the US with bicycles coming along ; we peddled a lot ...all I needed was 2 units of insulin daily , no other meds .My Specialist shared several years ago that a 65 year patient of hers was diagnosed with type 1 .In my circle of friends/acquaintances not unusual to be diagnosed in mid forties and later .
I actually didn't say that "most Type 1 diabetes is diagnosed in childhood." I said that the most likely age of diagnosis is 10-14. These are two different things.
Your response sent me back to research info on this topic. I found that T1D diagnosis in the under 20 population is at about 19 per 100,000 per year. Unfortunately, I could not find the same data regarding adult populations.
It makes sense that T1D diagnosis in adults outnumbers childhood diagnosis since the number of adults is much greater than the number of children.
I don't believe my comment contributed to a "dangerous myth." In fact the gist of my comment was that I, like many of the responses in this thread, were diagnosed as an adult.
I understand your sensitivity toward medical reluctance to diagnose an adult as a T1 simply because they are not children. I was lucky enough in my diagnosis at age 30 to not be treated this way. Perhaps I was lucky because I was not overweight. I was immediately given the correct T1 diagnosis and put on insulin.
I share with you the the outrage at T1's misdiagnosis and subsequent mistreatment due to this medical community bias.
Hi Jessica, you're in good company here! I was diagnosed at the age of 27. I was first diagnosed with Gestational Diabetes through a Glucose Tolerance Test. When I delivered my baby girl (she's now in grad school), my bg returned to normal immediately. Shortly thereafter the horrible symptoms you describe returned with a vengance - weight loss of 25 pounds in a few weeks, unquenchable thirst, constant urination and the most extreme fatigue I've ever felt in my life. Then diagnosed Type 2 by my primary care doc at the time and started on a parade of oral meds, which did nothing.
Finally made my way to an endocrinologist who diagnosed me as Type 1. My endo says the early misdiagnosis was probably because I was honeymooning so there was still some insulin production. After 25 years of injections, I just made the move to a pump (OmniPod).
I went through more than a few years of denial, anger, and grieving when I was diagnosed. Then it hit me that this was my new normal and I better get on with it. Once I accepted it, everything just became more routine.
I completely agree with you about feeling bad for the children with Type 1. I'm glad that I at least had a childhood free of these worries.
Stay positive, girl, no matter what. It makes things easier. :)
I was diagnosed at 50 during a routine physical. I attributed my symptoms to my age, working full-time, having young children, keeping a clean home, etc. Classic super woman nonsense.
Welcome to the club. You are most definitely not alone. I was diagnosed with T1 last year at 50! It *is* a lot to learn, but the folks on here are very good to learn from and are inspiring to me in the level of control they achieve and how they don't let diabetes stop them from what they want to do.
The good news is it soon becomes 2nd nature and you just deal with it and keep on keeping on. Is it frustrating at times ? Definitely... but so are most things.
Make sure you get a good health care team that supports you in your personal goals. You may have to try several different Dr,s or educators to find people who can help you the best. Ultimately , you have to control diabetes, don't let it control you. Read all you can : "Think Like A Pancreas" , "Using Insulin", and "Pumping Insulin" are really helpful.
I know what you mean, Shawnmarie! I was 58 and just thought I was tired all the time because I was working two jobs stashing away money for retirement and getting ready to move to Guatemala. Then it hit me, stress does not make you pee a lot, drink water...and unfortunately, it doesn't make you lose weight - especially at my age! Boing! The light went off in my head and I knew!
Thanks for clarifying Terry, and I apologize for leaping so swiftly on my soap box! If all the adult-onset Type 1s are included in the stats for T1, and since the vast majority of new-onset Type 1 is over the age of 20, it is probably not true that the "most likely age of diagnosis is 10-14." I have read that there is a peak at age 10-14 and also a peak at ~40. Anyhow, again, thanks for clarifying and we are certainly on the same page, and I appreciate your comments.
I'm amazed that you were tough enough to work two jobs before diagnosis. I was so out of it that I could barely concentrate. The first CDE who saw me gave me a very good pamphlet put out by one of the pharma companies on matching food to insulin written at about 7th grade level.
Sorry that Guatemala didn't work out. Hope your new home in California is bringing you everything you need from a place to live.
Maurie
I got my diagnosis almost 3 years ago now, 2 months before my 30th birthday. Had all the symptoms you mentioned except for really the exhaustion, I still tried to mountain bike although I really hurt my leg muscles on one ride a while before I went to the doctor, took a week before I could kneel down without pain.
I'm actually more glad I developed it later after I matured, I've seen the struggles of younger kids in my hometown and a college aged co-worker while attending the university, a handful of times we found him in the backroom/breakroom conscious but unresponsive and had to call for an ambulance on two occasions. I was more acutely aware of the dangers and took it on myself to educate myself as much as possible which I don't think I would have handled as well in high school or while still at the university.
Melitta - Thanks for the reply. I think we're dealing with a matter of semantics here. The incidence or rate of T1 diabetes diagnosis (number per 100,000 per year per limited age cohort) is probably the highest in the 10-14 age group. Comparing absolute numbers, I agree that the number of adult T1 diagnoses outnumber child diagnoses. In that context, I still think that ages 10-14 is the most likely age of diagnosis based on the rate of diagnosis for any given year. We may be splitting hairs here but I think we've illuminated some important points. I appreciate your response.
Just to further pick nits: I think the stats that are out there are skewed because "new diagnosis" numbers would include people like me who were initially misdiagnosed type 2 due solely to age. I'm sure nobody went back in and corrected my initial diagnosis for the purpose of "initial diagnosis stats". Since about 10-15% of newly diagnosed type 2's are actually type ones that would be a large portion of adult diagnosed type ones who don't correctly appear in the type 1 stats.
I just looked at a website for a Type 1 support organization in which the old outdated stat is still being repeated."Type 1's are about 10% of the population of diabetics". Nope. Including the misdiagnosed type 2's that figure rises to nearly 25%. I wonder how many years it will take for the stats to catch up with the reality?
Ah Jessica, I was 71 when diagnosed. I get other ppl into it by telling them what I'm doing and what's next if I eat such and such, and when I'll test next (since they're in the car and I'm driving)! There's a whole bunch of things I do to get my friends actively thinking with me. Every person on earth has an "alone" part of them. If it isn't T1, it's something else. I'm usually with much younger people than I am and they're always surprised by the routines I use to keep me remembering to test, to substitute lower carbs, and on and on. They're also surprised that insulin doesn't cover everything I might put in my mouth - and that insulin has to cover carbs, not just sugar! So, you are NOT ALONE! Keep talking here, and you'll never be alone! I thoroughly enjoy life with everyone - it's a WONDERFUL boat!
Hi jessica- You are a young'un, dx'ed at only 32. I was dx'ed 13 years ago at age 55. There was no question that I was a type-1. My BG was 500 and ketones were over 400. I too am glad I was dx'ed in later life. I do feel for the children dx'ed so young. They have so many more years to have D than I will. This site is so great to be with people who really "get it". When you feel alone, just come to TuD and you will find a friend.
Thanks, Maurie. I definitely felt that I was crawling towards the finish line for retirement. Are you retired now?
I love (and miss) Guatemala; it just wasn't too practical to live there. Yes, I'm happy in my mountain home now. No place is perfect, though and I have been way too ready to pick up and go if a place had some missing parts to it. Now I'm working on making my life here and if I want to "go" I can just take a trip!
Diagnosed at 41; a couple of years ago. I find that people really have no clue what it's like to live with diabetes. I try to explain but I watch their eyes glaze over after a few seconds. People tend to focus on the needles but lose sight of the big picture.
I think part of the difficulty is that a lot of people with Diabetes look perfectly healthy. It makes it hard for people to see the difficulty with it.
I'm still working Zoe. A pleasant but "misspent" youth will keep me plugging away until 70 if my health holds up.
Yes...I was 29yrs. old. Hit me gradually after the birth of my daughter. I knew the symptoms because my Mom was Type 1. Went into DKA in 1995 and almost died. LONG road of recovery and acceptance. Almost 20 yrs now and it is still hard at times. It did get alot easier than in the beginning. I feel "Alone" at times too, and this website really helped me fit in. With other people/family/friends most try to understand...but, unless you have it you really don't get it. If I can help in anyway please let me know. I have found that Life is worth fighting for, so I may get down for a little while but not for too long.
hey robyn...yeh i had a long recovery too. i def feel a little better about it now then 5 yrs ago when i got it...but its still fustrating. noone gets what i feel from day to day but evone on here. im thankful i found this site. ty for ur reply. we will stay intouch :)
yes ppl dwnplay it n act like eating right is all we need to do. it pisses me off. diabetes is a job thts 24 hrs a day..no vacas no breaks.
Diagnosed at 26--6 months ago...Lost weight, all of the normal symptoms. It has been a big adjustment for sure.