A subject dear to my heart because I was misdiagnosed for over 8 years. I even asked if I could be a type 1 to my pcp and my endo at the time and was told no and never tested. All sorts of drugs were tried on me to no avail. After 5 years I was put on a basal insulin only and kept getting worse. I finally switched doctors who added a bolus insulin and was sent to a new endo when she was hired, who tested me without me even asking and I found out I was positive for the antibodies and zero insulin production. Knowing the proper diagnosis changed my whole care. I already swam 75 laps a day, ate a really healthy vegan diet, but I thought my body could cope with skipping insulin sometimes as a type 2and I was nonchalant about doses used. I had been told to increase my insulin half the time because of highs part of the day, but never taught carb counting or proper dosing or even about hypos as a type 2. The type 1 diagnosis made me understand that I needed insulin for everything I ate and that it needed to be adjusted when I ate and for what I ate.
Part of the problem of misdiagnosis is drugs and lifestyle changes can work at first because you still make some insulin for a while, until you reach the tipping point. Being properly diagnosed means a clearer understanding of needing insulin and absolutely having to have it at some point. What you eat is important to everyone, not just diabetics. Healthy food versus unhealthy food. But as a type one it's about learning to dose for whatever food you do eat. And what exercise causes in lessening insulin needs, what stress causes in BG levels, that to carry hypo treatments everywhere because our body decides to change it up because it's a little hotter outside, etc. Being diagnosed as a type 1 in the US, means being able to get insulins, insulin pumps and CGM's of your choice. Although they are now starting to also okay CGM's for type 2's.
While most type 1's have a positive antibody test. The GAD test is the most commonly used, but it is not the only antibody test that can be done. Some Type 1's don't test positive but don't make insulin and they don't know why yet. That is where a C-Peptide is also useful. Low or low normal is a sign of being a type 1, high or high normal is a sign of being a type 2 because as a type 2 you try to make more insulin to compensate for being insulin resistant.
The figures are all over the place. But a couple a years ago they announced that over 38% of type 1's were still being misdiagnosed still as type 2's at first. "
A study found misdiagnosis of type 1 common, with half of those misdiagnosed still being treated as though they had type 2 diabetes 13 years later. In May 2019 The results showed that twenty-one per cent of participants with insulin-treated diabetes who were diagnosed after age 30 met the study criteria for type 1 diabetes in England." " A study from the Diabetes Alliance for Research in England (DARE) found that 38% of type 1 diabetes patients diagnosed over age 30 were misdiagnosed with type 2 diabetes and did not receive the required insulin4. Testing for anti-GAD antibody and C-peptide is the first step to differentiate type 1 diabetes from type 2 diabetes. While up to 30% of patients with type 1 diabetes will be antibody negative8, a low C-peptide can help clarify the diagnosis9"
"In the U.S. as well, the National Institute for Health and Care Excellence (NICE) doesn’t recommend rigorous testing to differentiate between type 1 and type 2 diabetes. We know that providing type 2 treatment of tablets for those with type 1 diabetes is not effective, as they need insulin."
And still to this day Type 1 is often thought of as a childhood disease by the general population and the medical field. But 50% of people get it after the age of 30.
I know that my care and health changed for the better with the proper diagnosis of type 1. It became about learning to properly use insulin, that I had to have it to be healthy and stay alive.
(1)
https://www.verywellhealth.com/diabetes-misdiagnosis-6745378
(2)
https://www.diabetesincontrol.com/m...A6rm-woyL2x2QBIYDL2lv6ftQGOtGoJza1MeLASQIpogo