I came across TUdiabetes about eight months ago when I was looking to understand diabetes and why I had it. With the help of my online friends, I learned that I was right to question my diagnosis. In the end, I was correctly diagnosed with LADA and I’ve been living on insulin happily ever since.
But this story does not have a happy ending because through TU I’ve met so many diabetics from all across the world who have been misdiagnosed or who question their diagnosis and are perhaps not receiving proper treatment.
This phenomenon is something I believe leaders in the diabetes community need to be aware of and need to address. I’m appealing to you to share your stories of misdiagnosis in an effort to show that this problem is widespread.
If you’ve been misdiagnosed or you question your diagnosis, please share your story here. It can be as brief or descriptive as you’d like. You don’t have to identify yourself, but I would like you to at least say what state or province you’re from and what country. If you’ve already told your story on another discussion thread or on your profile, please cut and paste it here. I’m interested in any story of misdiagnosis you’ve had (e.g., Type 2 to LADA, gestational to Type 2, Type 2 to MODY).
I’m hoping to collect at least 50 stories that I can send to these organizations to draw attention to this issue.
I can identify with your frustration. My first Endo mentioned a test for LADA but never performed one. My levels would swing badly, to 400 and then back down. I experienced frustration because there was no remedy advised since my A1C was acceptable. I have been told by other doctors regarding LADA "There is no such thing.", "LADA, what is that?" from my PCP and my levels are hitting 500+...meanwhile...my appointment with the Endocrinologist was 2013. I questioned how much damage my body would have before I could get my glucose levels- leveled out. God blessed me by allowing my request to be on the cancellation list for the Endo to be moved up in front of 50 others. Now I have care from a Dr. that has listened intently, running a battery of tests and tells me not to worry, "we will get it under control". I am under an angels wing of care and knowledge now and although I still have terrible spikes sometimes, I feel I will be able to control it. How can we make medical professionals more receptive and compassionate to LADA? I am scared for LADA folk that get lack of care or misdiagnosed due to the 'old school ways of thinking'.