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Medicmom2.0

T1D question For Dr Hive

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I was hospitalized with terrible blood sugars again, and they ran the type 1 diabetes antibodies, which came back positive.  I’ve had PCOS and about two years ago my A1C skyrocketed and they diagnosed me with Type 2.  My blood sugar came down some but not much with the oral meds. I caught the flu in January and that seemed to really change something, because I’ve had to be hospitalized several times since then with uncontrollably high blood sugar.

Has anyone heard of becoming a type 1 diabetic as an adult?  As soon as they put me on insulin, I’ve stabilized to a place I haven’t been in years.  They think I’m still producing a small enough about of insulin to keep me alive, basically.

Is this crazy? I’ve never heard of it...but I feel a lot better. 

Edited by Medicmom2.0

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I'm no expert, but I do remember hearing about someone who was diagnosed in her 20s. Glad you're feeling better!

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I don't think it's particularly unusual for adults to be diagnosed with T1D. I know that those with RA (and perhaps some other AI diseases) are considered to be at higher risk. But I don't know of anyone personally. 

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My dad was diagnosed with Type I diabetes after my oldest sister was born, so about age 24 or 25.

ETA: It sounds like you have some autoimmune issues going on. Does anyone else in your family have AI issues? I have Hashimoto's, as do 3/4 of my sisters.

Edited by Martha in GA

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If we're only referring to insulin dependent versus non-insulin dependent, then yeah -- my dad had that, which he developed in his early 50's. He was active and nowhere near overweight. But it was long enough ago that AFAIK doctors didn't commonly distinguish between insulin dependent/non-insulin dependent or T1versus T2. It was back when all diabetes was usually referred to as "sugar diabetes."

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Yes, there is also a couple different types of what they call type 1.5 where you develop it as an adult, probably due to genetic issues.  MODY is one of them.  LADA is another.  I think there are a third and fourth type too, but I don't remember the details of those because they're very rare.  Like they've each been identified as genetic in single families rare.

Halle Berry developed it as an adult.  She thought she had type one, but she still makes enough insulin that when she eats VERY low carb she doesn't need to inject it, so it's probably MODY. I think she follows something like Dr Bernstein, far under 30 grams of carbs a day.

Most people in my dad's family develop diabetes before age 40, whether they are underweight or overweight.  I keep thinking someone should do a study of our family.

 

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It's not that unusual to be diagnosed with type 1 as an adult.  My former neighbor was diagnosed in his 30's I think.  And a few years ago HIS son was also diagnosed in his 30's.  It definitely happens.  It also happens that adults are diagnosed with type 2 and were actually misdiagnosed.  

There are also less well known/understood types of diabetes, like LADA, 1.5, MODY etc.  

Good luck to you!  

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The endocrinologist thinks it’s more like a 1.5.  I think the suspicion is that whatever flu I had in January(positive test for influenza) triggered the antibodies that are killing off my pancreas.  At least that’s my understanding. I do know that some type 2 diabetics need insulin, but that is not how this has been described to me.  Basically the bloodwork shows my pancreas is being attacked by the antibodies.

I do have a family hx of autoimmune issues such as lupus and hypothyroid, but I test negative for all of that.  
I am glad it appears this is solved, but I have been focusing so much on trying to reverse the T2D that it’s very frustrating to understand I won’t be able to reverse all of it.

My dad says that my grandfather’s pancreas failed in his 30s and he was insulin dependent after that, so there is likely a genetic component as well.

Edited by Medicmom2.0

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1 hour ago, Medicmom2.0 said:

The endocrinologist thinks it’s more like a 1.5.  I think the suspicion is that whatever flu I had in January(positive test for influenza) triggered the antibodies that are killing off my pancreas.  At least that’s my understanding. I do know that some type 2 diabetics need insulin, but that is not how this has been described to me.  Basically the bloodwork shows my pancreas is being attacked by the antibodies.

I do have a family hx of autoimmune issues such as lupus and hypothyroid, but I test negative for all of that.  
I am glad it appears this is solved, but I have been focusing so much on trying to reverse the T2D that it’s very frustrating to understand I won’t be able to reverse all of it.

My dad says that my grandfather’s pancreas failed in his 30s and he was insulin dependent after that, so there is likely a genetic component as well.

My father was diagnosed with Type 1 at the age of 77,  just last year. He has always been fit, trim and active and with no other health conditions. No type 2, no autoimmune issues, nothing.

Just like you, it followed the flu. My father was hospitalised for the flu and a few months later he was diagnosed Type 1 Diabetic. The doctors said it was VERY unusual to be diagnosed Type 1 at his age, and they said their best guess was that the flu led to his hyperstimulated immune system attacking his pancreas.

My father has adapted well to being insulin-dependent, and really, considering how acutely unwell he was, Type 1 diabetes was a 'good' diagnosis. They really thought he most likely had pancreatic cancer. 

I hope you find a treatment plan that works for you.  All the best.

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I am sorry to hear about your diagnosis. T1 diabetes is a difficult beast. It is not uncommon for adults to be misdiagnosed with T2 diabetes when they develop it as adults because the stereotype is that only children get it. It's whenever the perfect storm finally triggers your immune system to attack your pancreas and it has nothing to do with age.

My DD was diagnosed as 23 months old. She was "honeymooning" for the first year or so when her body was still making some of its own insulin. (Which was kind of a pitb because I never knew when her body was going to help out and make insulin) Then she came down with some virus and I could tell her honeymoon abruptly ended because her insulin needs went up pretty dramatically. 

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I also have heard of people being diagnosed as type 1 as adults. It's unusual, but it happens.

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