Type 1.5 for more than 20 years

[Outlawe]

Hello - finally decided to get on line and connect

 

[Antje77]

Hello - finally decided to get on line and connect

Hi @Outlawe , and welcome!

 

[michita]

Hello and welcome to the forum. Please tell us more ! 20 years as type 1.5 are you now now on insulin??Are adult onset type 1s any different from other type 1s in a long run?

 

[Outlawe]

Hi - sorry for the delay in replying. I was initially diagnosed in my 30s as a Type 2 but I didn't have any of the usual signs and I already had one other autoimmune disorder (thyroid) and autoimmune disorders are very common in my family. Initially treated with Metformin (yuk) I went onto insulin (long acting and bolus) but categorised as a Type 2. After many years, really by happenstance I changed to a different diabetes clinic who did the now common tests for Type 1 and my categorisation changed. The main difference is that as a Type 1 (in my area at least) there has been much more support, particularly from a great DSN, access to a carb counting course and adequate test strips (I used to buy my own supplementary supplies). I'm now on Tresiba and Humalog. Not sure what the difference in the long run between an early diagnosed and a late diagnosed Type 1 might be but I guess everyone's journey to diagnosis is different and hence who knows how our bodies/metabolisms have coped (or not) along the way.

 

[Sgathach]

Wow 20 years!
Can I ask, did you ever get any c peptide tests done and were you able to keep some of your beta cells?
I am asking as I was just this week confirmed as type 1 (or 1.5, still got some insulin) and I am currently on a low dose of lantus/basal only - and I have hopes to keep it that way for as long as I can

 

[Outlawe]

Hi - Good news that you've still got some of your own insulin. I think the CPeptide tests are a fairly recent thing. There were never any of these or the GAD tests done during the time the consultant insisted I was a Type 2. Eventually (with a change to a different hospital) a new consultant decided that maybe with a family history of autoimmunity my suspicions that I was really a Type 1 might be right and he asked my GP to organise GAD tests.... then (story of my diabetes really) there were further mix ups and I eventually got the results a year later!! To be honest once I went onto a basal/bolus insulin regime (way back in 1999) it began to feel like I could cope and beat this thing and the 'Type' didn't seem to be an issue. It was only the new very helpful consultant who pointed out that categorisation as a Type 1 would give me access to better support that opened my eyes!!