11 Avenue de Lafayette
Boston, MA 02111
Phone: 617-892-6100
Email: admin@t1dexchange.org
Ā© 2022 T1D Exchange. All Rights Reserved.
Originally diagnosed TYPE 2, but understandable I guess. Obese; 5’6; 255 lbs; heavy eat and drinker; workaholic. After a week on shots, 6 month of meds, three years diet alone levels went crazy (lost 105 lbs). Medical trials determined I was a TYPE 1 25 lbs underweight: 21 years on insulin.
I was 19
At age nine, 57 years ago! š
At age 10 for me, 56 years.
April 3, 2008, eight days before my 24th birthday
My T1D was brought on immunotherapy cancer treatment! Talk about adding insult to injury! LOL
Primary care doctor diagnosed me as type 2 at age 54. Having zero success with oral meds I visited an endocrinologist who, after several tests, diagnosed me as type 1 and began insulin treatment. Well controlled using a Tandem t:slim x2 and Dexcom G6 combination.
I was dx’d in 1983, about a month after my 28th BD. Probably triggered by a virus–I’d had a nasty cold in October that took a few weeks to get over, but then these other symptoms started that didn’t seem to relate to anything. Hunger/thirst/peeing, headache/nausea all the time. Fortunately my MIL had medical training and got my wife to take me to a Dr. Fortunate for me, the Dr was up on current knowledge and I wasn’t misdiagnosed like a lot of people out of their teens. He told me about the whole “T1” “T2” nomenclature change, and why it was going to help break the erroneous association between age and diagnosis, but it hadn’t been formally adopted yet, so my dx still says “juvenile type.” Funny thing is the T1/T2 thing obviously hasn’t worked as intended. You just get people being dx’d Type 2 because “you’re too old to have Type 1,” which is hilariously ironic in terms of linguistics but not so hilarious from the p.o.v. of consequences for the patient.
Oh yeah! Now if we can ever get the insurance side of things to recognize the reason for the “new” nomenclature. I still get “you’re too old for T1D (I was 30 when Dx’d -finally correctly” with T1D, and have been thrivnhg for 40 years with it. If my health plan has to change, I am told “to old”. So I remind them that there is a reason for the name changes, that 40% of new T1D Dx’s are adults, and if Dx’d as a child, and you have access to what you need to take care of yourself, you get to grow up to be an adult with T1D. And BTW, I remind them there is no cure.
I was diagnosed 47 years ago at age 27 and never encountered any doubt that I was T! until I started getting kit under Medicare — the protocol says I have to have the C-peptide test thing annually. OK, it is probably there to help prevent fraud (docs and patients reselling stuff), but surely they know once you have had that test with an ‘undetectable’ result a few times there cannot be any doubt that you have T1, something with no cure!
48. Initially misdiagnosed as T2
April 22, 1962. Day before my motherās birthday. āHelluva birthday present!ā Age 12, sixty years with T1d.
Age 23, July, 1977.
Just a very few days before my 19th birthday.
In June of 1990 at age 26.
1960 @ age 3
Only after a viral infection took out my pancreas and it was not Covid-19 related two years ago
I was diagnosed at the age of twenty one years in 1971 and my whole family was very shocked as I was the first diagnosed with T1 on both my Dads and my Mums side, my mums brother RIP said he thought it could have been on my father’s side of the family but that statement came back to bite him big time as he got type 2 about when he was 65 years old and two of his grandchildren got it at the age of 9 years and the other got i about three years ago at the age of 24 years, so from those two diagnosis diabetes came from my mother’s family side. I have it for 53 years next month and I feel in great health overall with regular blood tests proving that’s on an ongoing basis and with compliments being paid to me by my clinical health team members. I run an average of 25 to 30 kms on a treadmill weekly as well as doing physical activities like sawing wood and plenty of garden work like doing garden drainage work to sort out garden drainage problems.
Diagnosed with juvenile diabetes in 1980 at age 32. My doc was genuinely surprised that someone my age with nothing prior, including diabetes in my family as far back as anyone could go, to indicate this would happen. Over the years, I’ve met several people who were diagnosed at a similar age so I’m surprised it’s just 10% in this sample so far.
I was 28, 1983, and basically the same story as yours, except my doc, fortunately, was aware that age wasn’t a factor when it comes to “juvenile” even though the nomenclature hadn’t changed yet. I’ve also met a number of people who were dx’d around the same age as I was, so I was kind of surprised too, though it’s up to 15% now š
At 36 after dx of thyroid cancer
I was fourteen. And thought being a teenager, even in the fifties, was hard enough. The embarrassment factor was probably the hardest part!
I was 35 when diagnosed. 30 yrs ago
I have monogenic T1D and was diagnosed at age 18 months.
Heart emoji ā¤ļø
Husband was 66 but, fortunately, has never had problem with anyone who matters confusing his condition with T2.
At 14 when I was recovering from jaundice.
Diagnosed as Type 2 at age 46. When the honeymoon was over, a C-peptide showed that I was Type 1.
54 years old!!! I had other autoimmune problems as child and Hashimotos thyroid at 21. So felt t1 was in cards. Always remembering those who developed t1 in youth. My hat is off to those survivors!!!!
i would be interested in seeing the same question asked with smaller intervals for the age range of 8 to 19. It has often seemed to me that lots of us join the club around age 10, myself included.
At age 30, 48 years ago.
I was dx. in 1955 at the age of 8.
One- and one-half years out of the US Navy.
Fifty-four years ago.
I was 5.
I was in the hospital for a month (no clue as to why I was there so long).
At 65, primary care doc insisted it was T2. Fortunately, my sibling is a doc and INSISTED I get GAD-65 tests. Primary care doc finally gave in and tested which showed result off the top of the measurement scale.
I was 22. It was discovered shortly after I left the British Army. (I used to be tested once or twice a year whilst serving having informing them, when I ‘signed up’, that I had a brother who was also Type 1. I guess it was never ‘picked up’ as I used to be something of a fitness freak. i.e. I used to be in the boxing team; I practised Martial Arts; I regularly used to be out training for upcoming sporting events as I used to run long distances.)
My 40th birthday present ā misdiagnosed by my GP as Type 2. Corrected five years later when I started insulin.
Diagnosed at age 4 in 1956.
at age 8, about 41 years ago
Age 4 in 1951, I know no other life. Life expectancy then was 20-25 years. Being an optimist I chose 25. Exceeded the mark a tad. Now I have to stay healthy to take care of the better half. Hope she makes it.
The “Woe is me” people just don’t get it. Real life, real people, real challenges brilliantly disguised as problems are for those of us up to the challenge. And most of us are engaged and doing it. Good job, guys! Keep it up. š
The world would have been for the worse off if you had gone at age 25. Congratulations, and keep going.
I was given 10 years when I was diagnosed, 45 years ago.
Age 8, almost 60 years ago in late December 1962.
4
5yrs old.
My 29th birthday present was Type 1 diabetes. I passed out (don’t remember) and ended up in the hospital with BS of 700+. 2 weeks of recuperation in hospital.
Age 6. I had German Measles and double-side mumps within 18-24 months prior to the T1D diagnosis
Misdiagnosed in 2018 as T2D in the ER at age 57. I was in DKA. I have always been treated with insulin. My PCP felt vindicated that she had treated me as T1D from the start due to the rapid onset, when the tests came back positive for GAD65 antibodies.
I was diagnosed at age 2 1/2 years.
I was 12 years old, my father had a urine test kit. I tested one day, just playing around with his kit and it came out bright orange which was the highest reading, went to Dr wound up in hospital to start insulin, my father never developed diabetes, my self and 2 brothers did, all type 1, forth brother never did, he is 73 now I am 76.
Already answered at top, I was 12 years old,
See comments at top