Almost 1 year in and still questioning diagnosis

Hello everyone, been a while since I have posted here but need some of your thoughts.

I am coming up on 1 year in as a type 1 at the age of 57. All the tests showed I had the GAD Antibodies and C-Peptide below normal, Islet antigen was normal but according to my Endo at Joslin he said that is to be expected in anyone over 30 with type 1.
Type 1 runs in my family, 2 cousins have it but were both diagnosed as kids.

Here’s the thing…yes at the beginning my numbers were high! I was put on bolus and basal insulin and struggled for months to get things down. Then I quit my job (long story, bullied by boss) and since I have been home my numbers are amazing! My A1C is down to 6 and my monthly average is around 127. I tend to eat a relatively low carb diet and my numbers are so low I tend not to need the Novolog during the day. The only time might be dinner if I am having pasta or pizza etc (or God help me Chinese food!). I take 6 units of Triseba at bed.

I know I should be grateful I am controlled but I can’t help but wonder. I mentioned this to my endo the last time I saw him. Told him could it be wrong? He just shook his head and showed me the lab results again. My diabetes RN said she thinks I will probably always be well controlled.

I find it weird that now that I am out of work my numbers dropped. Does stress play a factor? Although, now that I am out of work with no insurance I have a stress of a different kind!

I am sorry to sound whiny when so many of you might be struggling but just wanted some insight.

Thanks

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Stress is bad for all living things, so removing lots of stress will definitely help you during what sounds like a honeymoon period.

The honeymoon can come with its own uncertainties and frustrations, but if you’re truly T1, you can figure on a slow but steady progression to greater insulin requirement. I miss the days when a half unit of bolus made a real difference!

Stress definitely plays a big role – I see that in my numbers (big time this year!).
My case is not all that different from yours – I was diagnosed at 50 and, though I did not test positive at the time for GAD65, my c-peptide was low and continued to drop. I, too, have a somewhat easier time maintaining reasonably good numbers, especially on a lower carb diet.
My Dx was Type2 at the beginning, but my endo has since changed my diagnosis to Type 1. I do use more insulin than you do, but did well on a lot less for a while – I’m almost 6 years from diagnosis now - and I did see a change in that along the way.

Stress is a huge factor in diabetes management so yeah not having that job anymore probably made a big difference. When I was in school I was unable to treat my own diabetes properly (school policies) and as a result my BG’s were terrible. When my mom finally took me out of school and I could start treating myself the way I was supposed to my BG’s stabilized. Is it possible you were having a similar situation? BTW you are probably in an extended honeymoon so enjoy it while it lasts :smile:.

Your diagnosis is not that unusual… many in the same boat get diagnosed as T2 and then eventually get corrected to T1 when someone orders the antibody tests. That was the way I was for over 10 yrs, with a very long honeymoon. More recently, I’m on a tighter insulin regimen (Tresiba+Afrezz), but for some the progression may take quite a bit of time. YDMV

I was diagnosed with Type 1 at the same age and have been well controlled since getting stabilized which took about 6 months. An A1c of 6 is excellent for someone with diabetes but it’s not something a civilian would want to see and you’re maintaining that 6 using insulin. While it might be possible that you have another “flavor”, it wouldn’t make a difference. You’re getting good results with a drug that is easy to self-manage. There isn’t going to be a better course of treatment.

Maurie

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