Seeking stories of misdiagnosis
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.
Tags: 1.5, LADA, misdiagnosis
Replies to This Discussion
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Permalink Reply by drsoosie on -
I share the same story as everyone here. Was told I was Type 2 even though from everything I had read I did not fit the profile. Further I am an autoimmune person with Grave's Disease. When I broached my doctor with my suspicions he told me there was "no way you could be a Type 1...and don't ever ask me again." I switched doctors to an endo who said that I had a 20 percent chance of being Type 1. I knew right then and there I was correct. Of course the GAD came back positive and at that point I had dropped 15 pounds in two weeks. I was happy and sad all at the same time. Happy that I was right and would now be treated correctly...sad that I would be insulin dependent the rest of my life. It can be a lonely and isolating disease.
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Permalink Reply by Brian (bsc) on -
Thanks for sharing this. I know that you have started a similar discussion over on DD (http://www.diabetesdaily.com/forum/type-1-diabetes/40067-how-many-t...). You have an interesting perspective on this being a medical professsional yourself. Conservate estimates of diabetes suggests that at least 10% of the adult US population is diabetic, and with that rate one would reasonably expect even the front line family physicians would be competent to diagnose and treat diabetes, just as most of your patients depend on you for common dental problems. But apparently that assumption is too optimistic. I'd like to think that could be changed.
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Permalink Reply by drsoosie on
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Yes...it seems logical that any doctor treating someone for diabetes should be familiar with the different types and possibilities. It perplexes me that so many do not. I don't expect the lay person to know anything about diabetes but medical professionals should. It is epidemic in the US...the third leading cause of death. There must be a solution to this lack of education. I am just not sure how to go about it.
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Permalink Reply by Don on -
I encourage you to write a letter to your former doc and explain your correct diagnosis.
The more docs get with the program, the less this will happen.
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Permalink Reply by drsoosie on
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Funny...he is my patient...or was I should say. He knew exactly my correct diagnosis because I made him give me a referral to an endo when I was sure he was treating me incorrectly. We have spoken since and he never offered an apology or anything. All he would say is."you still need to go very low-carb and exercise twice a day" even though at the time I was emaciated and so ill from DKA. His arrogance would not allow him to see the bigger picture and learn from his mistake. I make mistakes all the time and I hope I learn from them. I am not afraid to tell my patients I don't know the answer to something. They actually appreciate it.
It is not called a medical or dental PRACTICE for nothing!!!
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Permalink Reply by 1DebY on -
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'.
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Permalink Reply by Susi (Ladalife) on -
If everyone diagnosed with diabetes in the world could send/give some kind of Diabetes Diagnosis Fact Sheet to all their local doctors, that would be great! Not really possible, but...
If we just get the people on TuDiabetes, who are from all over the world, to help, it could have some interesting results.
That's one way to make this misdiagnosis issue go viral!
If only 5 more doctors change their assumptions, great. If 50 more change or 500 more... imagine!
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Permalink Reply by drsoosie on
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I think the Diabetes Association should represent us by sending the word out to the doctors. Maybe we should start there with some kind of formal letter or something. Just a thought!
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Permalink Reply by mother4peace - Christine on -
Please keep us posted with the progress of this task. I would love to deliver something like this to the Diabetes Center that I attend. They are the ones who properly diagnosed me, but perhaps if they saw something like this they could take it a step further to bring awareness to it.
Here's my story: (sorry for the length...but writing it was a long time coming for me)
http://www.tudiabetes.org/profiles/blogs/79and-thats-not-a-bs-my
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Permalink Reply by drsoosie on
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All of you and your stories have given me much food for thought (not carby ones though LOL). I am going to figure out something and present it here soon for your opinions!
Susie
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Permalink Reply by Kady on -
Can't wait!!! Should be great Susie!! Carby thoughts...LOL...too funny!!!
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Permalink Reply by mother4peace - Christine on
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Glad that some good comes from my story. :) Will be waiting to hear yours. (btw..."carby ones" is funny!)
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