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Yesterday I went to see my endo, and he retyped me. Adult onset type 1. I have been on insulin from the beginning, but I don't need to go to the pump yet. I was wondering if this has happened to any of you?

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Hi latvianchick - same thing happened to me in the ICU except I wasn't conscious enough to reply 'what insulin?' But they later tested for antibodies and found none. To me it doesn't really matter what type as I was lucky enough to get the right treatment. Plus they found me a place on Dafne (carb-counting for those on insulin therapy) so all could be worse really!

It's funny, I was originally diagnosed as a Type II, and fell into such a depression when I found it was Type I from my endo. Now, 14 months later, I am proud to be a Type I.

Checked the wrong box....silly mistake.

Hi Jody,

When I was first diagnosed at age 28 a couple of doctors used the term "type 1.5" but when I settled in with a good endo and a strong mgmt team they later confirmed that I was adult-onset type 1. I think back then (13 yrs ago) the type 1.5 label was used more loosely than today. My understanding is that now it is used to refer to folks who have insulin-dependent diabetes and also suffer from obesity and metabolic syndrome. I've never had either of those issues. However, when I was first diagnosed my pancreas was still producing some insulin. Now, however, it is not. I didn't start the pump until 3 yrs ago, but could have started it from the very beginning as my insulin needs have always been significant.

Strangely, I was comforted by the type 1 label. I hate all the judgement and negativity associated with type 2 and I didn't want anyone to think I did something to cause myself to develop the disease. It's unfortunate that that was my thinking, but that's how I felt.
Hi Jessica. I believe 1.5, LADA, and Late Onset Type 1 are basically different names for the same type of Diabetes. I have actually never heard that 1.5 meant "obesity and metabolic syndrome". If this is now the new meaning (but I don't believe it is), I will have to immediately stop saying I have LADA/1.5 and just stick to saying Type 1.
Actually, I think now, people who have type 1 and who have insulin resistance (which may result in weight gain, increased blood pressure and other metabolic issues) have what is called "Double Diabetes." Generally, double diabetes occurs after many years. If you are dignosed with LADA, you may be insulin resistant and have some metabolic issues, but that is not a hallmark of LADA.

1.5 is a type (sub-set) of type 1. It just develops in adulthood, and the pancrease is still making a very small amount of insulin.

I am starting to believe that this might be me. I am going back to my doctor on Monday and presenting this.

Hi Type2Tommy: I have written several blogs on the problem of misdiagnosis; here is a link to the latest one. I also wrote a blog about misdiagnosis of insulin deficient diabetes. I hope these are helpful and good luck with your doctor.

Did any of you notice a big change in BG spikes after meals after type 1.5 diagnosis?

If you were on metformin and glyburide and insulin and now only insulin, did you notice how difficult it is to keep BG lower?

For me, the oral meds stopped working a few months before I started on insulin and my numbers were very high. So as soon as I started using insulin the numbers started coming down. But I think for people who get on insulin earlier they might see a spike in numbers because it takes awhile to get the I:C ratios, basal dose and ISF right and be using the right amount of insulin. (Not to mention learning to count carbs, and which things you just can't eat!). I think there is a steep learning curve to learning to use insulin, so it takes awhile before you get stable.

I am very confused... according to the doctors I am type 2. but from what I am reading is that I might be type 1 or type 1.5.So I am wondering if I should have it checked again? a little back ground. I have fought with my sugars my whole life was hypoglycemic as a child. About I have been on insulin for almost 3 years. my current doctor changed me back to the oral meds last summer because I was doing well my ac1 was down to 6.7. (last ac1 was 6.5) I asked to go back to the insulin because I felt better had more energy. I have done 2 half marathons and several 5ks and race between there. I love running mostly because it keeps my sugar under 200. most of the time. I am looking at doing a full marathon this fall and was looking to see what I need to do to stay healthy enough to finish without crashing on the course. So I found this site. now I have more questions about the big D in my life I want to control it not it control me. thank you for any help on this issue.

Hi Wayna: Misdiagnosis is really common. Sadly, I think that most adult-onset Type 1s to this day are usually misdiagnosed as having Type 2 diabetes. I have written several blogs on misdiagnosis, including A Field Guide to Identifying the Misdiagnosed Type 1 Diabetic and Bill of Rights for people with adult-onset Type 1 diabetes. See if those are helpful to you or you can relate. The way to find out if you have Type 1 autoimmune diabetes is via autoantibody testing (GAD, ICA, IA-2) and c-peptide is also useful. The important thing is that you are being treated with insulin. But a correct diagnosis can help you get better gear, including a CGM or pump.




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Melissa Lee
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