For people who've had Type 1 for a long time

I was diagnosed a little under 15 years ago. I wasn’t always as careful about my diet nor as disciplined about getting regular exercise as I am in more recent years, but I’ve always done a decent job in the past of behaving myself, and my A1Cs have been kept under 7 since diagnosis. So far, I’m complication-free, and I hope to keep it that way.

Some of whether or not you eventually develop complications is always going to be up to luck, but certainly maintaining a healthy lifestyle and “following the rules of diabetes” (for the most part anyways – we all fall off the wagon every now and again!) will have the greatest impact on your health.

Hi Natalie @natalie_b_148, a Warm Welcome to TypeOneNation Forum! I hope you enjoy and profit from what you will see here - and please contribute your thoughts and questions freely.

“Diabetes Complications” is a term not easily defined, and many of those conditions are experienced by people who do not have diabetes. That said, I will agree that people with autoimmune onset diabetes, currently referred to as TypeOne, may have an increased probability for developing certain “complications”. There is an ongoing Joslin Medalists study [published findings at joslin.org] of people who have lived with diabetes for more than 50 years that has found many participants who have Not developed complications.

I’m in my seventh decade living with diabetes and I’m experiencing some of the complications, two of those which are very probably caused by complete failure to manage my diabetes in the early years - I learned my lesson the hard way but too late to avoid retinopathy which was diagnosed in 1966. In those days the prognosis was total blindness within two years, but thankfully I volunteered as a guinea pig with a LASER and my vision was saved.

My kidneys are still working wonderfully, according to lab-tests and my doctors. Atherosclerosis, narrowing of blood vessels, is another story. I needed two artery stents inserted LAD four years ago, and according to the surgeon who inserted the “child size” stents the narrowing wasn’t caused by cholesterol [I’ve been eating 'healthy now for many years and keep my total cholesterol below 120], but rather by anatomic nephropathy, a narrowing of passages, which has been seen [only] in people with long-term diabetes.

Hi, Natalie @natalie_b_148,

So, why the interest in this topic of “diabetes complications”? Are there specific concerns you have, or is this just general concern?

Similar to @Dennis, I was diagnosed with diabetes in “the dark ages.” And, like Dennis, I am familiar with laser treatment of retinopathy. But after 60+ years with this wretched disorder that’s all I can report as being a problem.

This “complications thing” is generally considered to be a consequence of less-than-optimal diabetes management. But, and it’s a BIG BUT, there are some people who develop complications in spite of managing their diabetes pretty well. (I have a physician friend who began laser treatment of retinopathy about ten years after me; his diabetes had been very well-managed since his diagnosis.) But the data demonstrate that more complications are seen in people who do not manage their diabetes well. So there is an impetus to manage, manage, manage. Life with Type 1.

Tell us more about your concern, please. Then we can share information that might be more useful to you.

Bill

Relatively good A1Cs all my life, but diabetic retinopathy, macular edema, and other eye problems.

I am T1D for 66 years and am now 87 years OLD… Eye Doctor said last month, he MAY see a small dot on retina… Other wise NO so called D complications… I have been mostly on one shot a day, and never used a pump…

I developed T1D at age 4 in 1954 and am now 70 and doing well. I went through all of the early procedures, including test tube testing of urine, glass syringes. test strips and now pumps and CGMs. At age thirty developed retinopthia and had lazer treatments and doing fine but with tunnel vision and floating dots, I can still drive. Had heart attacks with narrowing arteries at age 45 (2 stents), at age 61 (1 stent), and age 68 (1 stent). I grew up with T1D so the extra procedures, diet, Dr. appointments have always been part of my life. And I think it has helped. Keep working to follow your Dr. and Diabetic Educator’s suggestions and remember you achieve anything you wish, don’t let any employer tell you that you cannot do it.

I have had type 1 diabetes for 56 yrs. I do not have complications.

Anita

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Hi, I was diagnosed 42 1/2 years ago at the age of 10 1/2. I have retinopathy in both eyes that is being watched but to date no action has been needed (I go to the eye specialist twice a year).
I have had some non-traditional complications over the years that may be more common in diabetics such as 3 trigger finger surgeries and some hair loss on my forearms, beard and eye brows (I was told that this is an auto immune issue more prevalent in type 1 diabetics). Other than that I am happy to say no other complications. I have been pumping for 15 years and with a CGM for 11 years, get plenty of exercise and eat a healthy lower fat, lower carb diet. My A1C is usually between 6.3 and 6.6.

I’m right there with you Anita…51 years and no complications. But I have always been careful and watchful. Except for a bulimic blip in highschool/college.

Hi Natalie, I 've been a type 1 for 66 years and no complications–Kidneys are great, eyes are perfect, am an amputee but not due to the diabetes, no complications. It has been my experience or from what I’ve seen that type 2’s seem to have more complications than us type 1’s, don’t now for sure just an observation. Hope this helps, Bye Jan

I recall having hypoglycemic events back in 1982 (1 year before officially getting a diagnosis in 1983). I was in third grade and just thought I was hungry! Years later and much more wiser… I know it was true hypoglycemia.
Of importance to this group discussion, I developed more autoimmune complications rather than T1D macro/micro complications. I learned early on to be aggressive with protecting what counts: ability to see, feel, digest food efficiently and awareness of my physical being I.e., TO NOT LOSE blood sugar control. (Especially low blood sugar).
While I have NO T1D complications at all, this have developed:
Hashimoto’s Thyroiditis
Dupuytrens Contracture (I obviously don’t drink EtOH)
Alopecia Areata

Yes. I’ve had T1 for 59 years, partial limb loss-RBK, neuropathy, kidney function is reduced a little, retinopathy thus eye surgeries but not blind. Since using an insulin pump & a CGM I control my glucose level pretty well now, last A1c was below 6.0.

I have noticed that as well. I think it’s because it’s harder to change your lifestyle the older you become. For most type ones, this has been a way of life earlier on. Also type 2’s sometimes don’t take it serious, maybe because they are not faced with life and death hypoglycemic or DKA events when only on pills.

January marked 20 years for me. No problems so far. My grandmother got diagnosed at 18, she is now 71. No problems for her either. When I was a kid I got a lot of stares in school because of my pump. One school year I had a girl call me “diseased person” for the whole year. I didn’t take care of myself back then (I was embarrassed to let people see me checking my sugars or bolusing). Doctors always tried to scare me into caring for myself (you’ll lose your feet and hands when you get older, your organs will fail, you’ll lose your eyesight)… I’ve gotten better as an adult and I’m happy to say I’m problem-free so far, and I even had a baby and a very successful and healthy pregnancy.

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Sounds good…This is a best motivation ever i heared. Thanks Justyne.:innocent:

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Hi Natalie. I’ve had T1D since a child (42 years). No serious complications yet other than cataracts, which may or may not been related to my diabetes. I’m on blood pressure meds to protects my kidneys, but don’t have high blood pressure (yet). My pregnancies were very challenging in the first trimester. Most of issues have been with severe low bs, which is very scary. I’ve almost died a few times due to lows.

Hi Natalie,

I’ve had diabetes for 54 yrs, 10 months and have no complications.

Pam

I was diagnosed in 1945, when I was 6. I have mild neuropathy in my feet and legs, but that is the only diabetes complication after 73 years with type 1.

Been doing this since 1964 and have no complications. My biggest problem has been with low blood, several near death ones. Have lived all my life on sail boats most of them having no inboard engine. Also have never had any type of refrigeration and most of that time has been spent in the Bahamas. Just remember the only reason you are still diabetic is because of the massive profits that are gained from anyone with a chronic condition, sad but true.

Have had type 1 since 1964 and also have no complications, except for the ones related to low blood. Have only been under the care of a doctor for part of my first year, till I figured out what for the most part their game is. Fortunately I am not completely illiterate and can of coarse read anything a doctor can. Don’t take any prescription medications and never have. Have always lived on sailboats and try not to get involved with the US medical industry.