Question about Adult T1 Diagnoses

In the States, family members of type 1's can join the Trialnet Natural History study and they test for antibodies to type 1. Some people have them before they get diabetes. But some people have the antibodies and never get diabetes too. But it does show who's at risk. I don't know if something similar is over there. Do you come to the States to visit much with your younger kids? If you do, I wonder if Trialnet would test them. I don't know if there is a residency requirement or not, but might be worth looking into if you come back anytime soon.

Even for siblings of type 1 kids, the odds are still pretty low for getting type 1. I'm sure someone knows the odds for children of type 1 parents, but I don't think it's very high. You know what symptoms to watch for and it's unlikely any of them will get it. If you're ever in doubt, you've got a meter and you can always test your kids if they show symptoms. But do remember that the odds are in their favor that they won't get it.

 

My mom dx'd at age 17. Carson dx'd at 9 months old. I was dx'd at age 30. We are a genetically screwed up family!

 

I'll have to do a search and see if TrialNet is available in the UK. Thanks for the info!

Smiles, Char

 

I was diagnose at age 46. My PCP diagnosed me as a Type II and put me on Metformin. I was sooooooo sick at that time I stayed glued to the sofa all day long for months. Finally, she sent me to an Endo and he ran the C-Peptide and Antibodies test on me and it came back positive as Type I. I'm not sure how she could misdiagnose me because the blood test showed that my urine glucose was over 1000 and I had very high ketones. I was in DKA and should have been in the hospital. I felt like I was dying and I guess I almost did!

 

didn't realize I had already posted on page 2.. I feel silly

 

Misdiagnosed

Hi Sarah,

I was also misdiagnosed as a Type II when I was diagnosed with diabetes at age 37. There is an assumption that you are a Type II or something else, such as your gestational diabetes diagnosis when you are diagnosed as an adult for some reason, even though I understand there are way more Type I's diagnosed as adults than there are children. I was diagnosed late June and didn't start on insulin until April of the following year after I lost 20 pounds and was almost in DKA. It wasn't until the following August that I finally saw an endocrinologist who ordered a c-peptide test and mine was a 0.4 or Type I. He took me off the 70/30 insulin I was using twice a day and started me on two shots of long-acting insulin in the morning and at bedtime and regular Humalog with meals, five shots/day. I've since tried an insulin pump for 4 years and recently used the Freestyle Navigator CGMS although I'm not using that any longer. It really is frustrating that there are so many caregivers out there that don't understand diabetes and the different types. To them it's all the same. Take care.

Sheryl
Type 1 12 years (1997)
Levemir and Novolog