Type 1 diabetics diagnosed later in life

hi. anyone get diagnosed with type 1 later in life? i got it at 32 yrs old. it hit me fast.within a few months i lost about 20lbs...lost most of my eye sight...couldnt remember anything. so exhausted....thirst beyond belief.....it was a huge adjustment b/c i lived 32 yrs without it. i felt like i litterally started my life over. it was so overwhelming. id love to hear from ppl tht got it even in their early 20s. ive only had it 5 yrs so it took me til now to finally get things under somewhat of control. i am very outgoing n always felt very insync with others...now having diabetes i find a part of me feels very "alone" even though im not. even when i explain what im going threw at times..i know tht ppl dont really get what im goin threw. wld love to hear from ppl in the same boat as me. :))

Hi Jessica, I was 39 when I was diagnosed with T1. It was a total shock to me, I really knew nothing about the disease. I educated myself and took some diabetes education classes. That was 13 years ago. I am a very strong willed person, and once the shock of this thing wore off I decided that it was going to be a part of my life, but not something that would control me, I would control it. I guess for me it was more of a mental mindset that I adopted and that works.

That is not to say that there aren’t times where I am totally frustrated and annoyed with diabetes, but those feelings won’t make it go away. You are not alone, there are so many of us out there. You have found this place, and it’s a great place to vent.

Personally I am glad I waited so long to develop this disease, I had all those years prior not having to deal with it. I feel badly for children with T1.

I hope this helps a little, your feelings are very natural and you are not alone. Stay strong…

Sandy

Hi,

From my perspective, you were diagnosed as a youngster! I was hit by Type 1 at 57 just about 5 years ago. It is very hard for people whose body works well to understand the effort in managing blood sugar. I don't let it worry me anymore but then I was always something of a loner and I have a very understanding spouse.

Poeple on TuD have been great and being able to discuss the minutia without having to worry about eyes glazing over is very freeing.

Take care,

Maurie

Maurie and I are almost diabetes twins. I was diagnosed at age 58; it will be five years on 7/8. However, due solely to my age, I was misdiagnosed as Type 2 and because I have LADA, (slow onset) I was able to manage for 15 months on oral meds. Lots of adults are misdiagnosed and I can only hope that's gotten better.

For me, I too am glad I got diagnosed later in life, if nothing else because I was one month from retirement and I've had the time and lack of stress to focus on getting my correct dosage, starting on insulin and managing the whole mess!

I wasn't shocked at all with my original diagnosis as I recognized the symptoms. My "second" diagnosis, oddly enough, was a relief as it explained a lot and I knew what I had to deal with.

I have nothing but extreme respect and admiration for those of you diagnosed in childhood or young adulthood. because you have so many other things to deal with at the same time.

Hi Jessica - While a T1D diagnosis is most likely to occur between the ages of 10 and 14, there are plenty of people like you. I was diagnosed at the age of 30. I was diagnosed in January, way back when, and I remember losing weight through the Christmas holidays while still enjoying all the holiday food treats. It was my eyesight going blurry that sent me to the doctor. Before that I had the classic frequent urination and a thirst that wouldn't stop.

I've also found diabetes socially isolating. If you don't have it, it's hard to "get it" and really understand what we are up against. I've made peace with that idea. Nobody can really know what's going on in another person's spirit. Just as I can not, for instance, identify with what someone is going through that just received an Alzheimer's diagnosis.

But I have found a few non-diabetic people with abundant empathy that seem to glimpse the difficulties that we T1's face every day, every meal. That, combined with trying to connect with other T1's, has helped me to positively shape my perspective.

Attitude is important but for me, but the persistent quest for knowledge about T1 diabetes research and treatments is the thing that keeps me going. The old adage, "Keep your friends close and your enemies closer," applies well to my relationship with T1D. Diabetes is my mortal enemy and I want to know everything possible about ways to tame it. It's a wild thing that will never be dominated until and if there's a cure.

Good luck to you!

A few months ago I was diagnosed with Type 1 at age 35. My dad had Type 1 and I worried about getting it when I was younger but after age 30, I assumed I was in the clear. Nope! I agree- most people have no idea what diabetes is like and many assume it's not that serious. I was in my last semester of grad school when diagnosed, and most of my professors didn't give me much of a break! My biggest pet peeve is when I tell someone I have diabetes and they say, "well, it's easy to manage." WTF? Diabetes care is like learning a new subject that changes every day- and my life basically depends on consistently giving it the attention necessary to stabilize my BGs. Still, I'm also really grateful that I didn't develop it earlier.

Igot it in my 40s. In fact, Manny is LADA too – he was in his 30s. You should check out the LADA group here.

You can get T1 at any age, up to and including 100. I got it at 42 and diagnosed myself with some BG and ketone strips I had gotten from a diabetes meeting. Was working in the field of diabetes, even.
As someone else said, you are a young'un! You have plenty of company. Lots of folks who got it in their college years and your age range inhabit the forums. But most of the people on here don't interact by age but by their diabetes issues. It is a diverse group of people, in my opinion.
You will learn how to take care of yourself if you want to and have the foresight to recognize that what you do now will affect how your diabetes and any complications progress. If you keep your A1c at 7 or below (lots of people here are lower than that) you should get few if any complications. There is evidence that the "cut point" for complications is 7.3. Per my endo, though I have not seen the studies, if any. Of course, each person has a different kind of diabetes, even within T1. It depends on whether yours is fairly easy to manage or not or in-between. Mine is hard to manage but I still have stayed below 7.4 for a number of years. No complications other than some neuropathy that is not debilitating. Eyes only have normal aging issues, no diabetic eye disease. Good luck!

I was diagnosed 12 years ago at the age of 34. My mom was a Type 1 also (who was diagnosed when she was 34 too!). It came on suddenly, like yours did. I've been thin my whole life, but lost 25lbs in about a month. Because of my age, I was treated as a type 2, even though the CDE didn't think I was. Protocol, I guess. Was on oral meds for only a month. Seven years prior, I had gestational diabetes and had to take insulin then too.

I was diagnosed in 2008 at age 31. I was actually in DKA--in the hospital for eight days (five in the ICU--probably longer than it could have been because I went in on at Thursday, and nothing of substance happens over the weekend). At dx, they did a c-peptide to determine type, and because I was really low, the official diagnosis was T1. This year, a new endo made me take a GAD antibody, which confirmed it.

I educated myself about diabetes as much as I could, and asked lots of questions online, which has helped me not feel so overwhelmed. I do let people around me know--it's enough part of my life now that I talk about it with different people off line. But I try not to complain unless I'm here, because the people around me just don't get it sometimes.

Actually, it is a myth that most Type 1 diabetes is diagnosed in childhood, and a dangerous myth indeed because then so many adults with Type 1 are misdiagnosed as having Type 2. It has been documented for at least 70 years that new-onset Type 1 diabetes is more commonly seen in adults, not children. In 1934 Dr. Elliot Joslin noted that the incidence of diabetes in lean individuals was relatively constant in each decade of life, but that diabetes in the obese was related to older age. A book published in 1958 (“How to Live With Diabetes” by Henry Dolger, M.D. and Bernard Seeman) that states that “[Type 1] diabetes is almost three times more frequent among young adults than among youngsters.” Today, with antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), insulinoma-associated (IA-2) autoantibodies, and/or zinc transporter), the same statement is proven true. A 2008 book, “Type 1 Diabetes in Adults: Principles and Practice” (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27). So Type 1 in adults is not rare, but unfortunately has been ignored by the United States medical community, whose focus has been children with diabetes.

Maurie: I love your line, "being able to discuss the minutia without having to worry about eyes glazing over is very freeing." So true!!! Thanks always for your words of wisdom.

Hi Jessica: You are in good company here on TuD, because so many of us were diagnosed with Type 1 diabetes as adults, including TuD founder Manny Hernandez. And just think, Mary Tyler Moore was diagnosed with Type 1 at age 33. The LADA group here is a good place to vent or ask questions or not feel so alone. Even though you are 5 years post diagnosis, maybe my top ten tips for the newly diagnosed Type 1 would be useful?

I was diagnosed with Type 1 at age 35, and I am now 17 years into this ride. Keeping motivated can be challenging. I have found the TuD and events like DiabetesSisters can be really helpful. I also attend a local Type 1 women's group that meets once a month, and that is such great support and bonding and sharing of experience.

Why thank you Melitta. A compliment from you means a lot - I consider your posts "must read". I had missed the "top ten tips" when they first came out as I was buried by work at the time. I'm glad you linked to them below so I was able to get a second chance.

I cannot agree w u more! its so fustrating but when I read ur post n others I feel so validated n understood. The most compassionate of ppl stil cnt relate to our evday bullcrap tht we deal with with diabetes. Its such an isolating feeling at times. but hearing similar stories HELPS SO MUCH ty very much for ur kind words n understanding n if u ever have to vent feel free! I’m all ears! :wink:

God it's hard to read your posts, Jessica! I'm sure you have lots of good things to say and it would be easier to understand them with out all the text message abbreviations!

I got it a month before my 17th birthday just 7 weeks ago. Although that's still pretty young, other diabetics gasp when I tell them because they are used to seeing it diagnosed in young children. Also for whatever reason it's a little less common in my town of 24 000 people. Out of the two high schools (both of which I have attended) and 1800 students between the two of them, I am the only type one diabetic. :(

I was diagnosed at 53. Talk about a surprise!

Yes, I too won the diabetes T1 lottery when I was 32 years old. Life definitely changed because up to then I was partying with the best of them, eating whatever I wanted,etc. After shots and pens I've been on the onmipod pump since Dec 2011 with the best control since being on the pump.

Hi:

I got it at the age of 59, three + years ago. Initially diagnosed as T2 because of my age, but after my test results were in I was told I was T1. Other than my health care team, I've only told two people that I have it. Don't want to deal with all the "advice" from folks who don't have a clue.

Sue