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 Kady on -
Unbelievable.!! Sorry Kelly!!! That is horrific!!!!
I again want to point out you can order your own GAD65 test and take it to labcorp, where they have the blood picked up and sent to the lab for testing and you get the results via email within 2 days!!
http://www.privatemdlabs.com/lp/GAD_Autoantibody.php
Sorry I should have put this up before!!!
K
Patience and persistence will pay off!!! Hoping and wishing for you all!! Its hard having to WAIT...I know, that is why I went ahead and paid $98 out of pocket to get my results!!!! Can't wait to hear the results for you and bsc!!!
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Permalink Reply by Brian (bsc) on -
Kady, thanks for the pointer. We had actually talked about this before (http://www.diabetesdaily.com/forum/introduce-yourself/39206-have-di...). While I know I can do this, it has become a matter of principle. My doctors should do their job. I should not have to do it for them. I pay good money for competent medical advice and I want them to order it and I want them to have to read the results. And you better believe I am going to discuss this with them. If I come up positive, all my doctors who have refused me this test are going to have to listen to me discuss this issue with them. I'm going to make them write all over my chart what the findings were and make notations about this. I want them to reflect on the care I have gotten and change their behavior.
Of course if it comes up negative, I really don't know what I'll do.
thanx for your suggestions tho.
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Permalink Reply by Kady on
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Awesome..as you should. And don't worry if the test comes up negative. I read on one of these forums...I think the ADA, that a girl once took the test something like 12 or more times before it came up positive!!! So no worries!!
Have you had the C peptide test done?? I am wondering if I might ask my NEW fabulous doc, who is an endo, if I could have it done to see what my pancreas is doing...just for my own knowledge, now that we KNOW I am LADA!!!!
I love that so many of us are fighters..fighting the long fight...I know it really STINKS we have to be fighters and that some docs are just stubborn...BUT GOOD FOR US!!!
I really can't wait to hear about your results!!!!
K
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Permalink Reply by Kelly on
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Kady -- I live in Canada, you can't have testing done on your own if you don't agree with your doctors.
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Permalink Reply by Kady on
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WOW...that is pretty terrible. DO they have an estimated time when you will get your test results.. and do they have a reason WHY the test results aren't back yet???
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Permalink Reply by Brian (bsc) on
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It would be nice to have a conclusive test for autoimmunity, but even having all four antibody tests is not absolutely certain. I had a c-peptide, it came in at 1.8 ng/dL with a blood sugar of 133 mg/dl. So low normal, but according to my endo it did no mean anything. I got another one with my GAD.
In the US, although you have a right to order your own tests, it does not mean that companies won't have their own policies to deny you access. My local labcorp refuses to accept orders unless requested by a doctor and they have refused to release the result of my own tests to me. Talk about stupid rules.
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My doc and my endo said "they" don't like to do it because it's expensive and it's not even done in my province (it had to be sent to Quebec). They said it takes 3 months minimum.
Again, and another reason why I'm doing this, it's because in Canada they don't recognize any need for this test because Type 1 diabetes should be apparent at diagnosis. Antibody testing is recommended only in teens who may be difficult to distinguish type or adults who've exhausted all oral med options. (That's according to the CDA, and I've been told the same by several people). -
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Permalink Reply by Melitta on
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I was misdiagnosed as having Type 2 diabetes, when in fact I have Type 1 diabetes. In early 1995, I had two back-to-back colds and never really recovered. I was 35 years old, and a life-long athlete. I was losing weight, eating a lot, peeing a lot, and was extraordinarily fatigued. I tried to make an appointment with my doctor and the earliest appointment they would give me was one month out. I kept calling to see if I could be fit in, if there was a cancellation, to no avail. Finally, my weight loss was so extreme (I was losing 3 pounds a day at that point) that a co-worker insisted I get help immediately. I went to my doctor without an appointment, and my doctor's nurse told me I had diabetes and told me about the progress in the treatment of Type 1 diabetes. When my blood test results came in, 619 mg/dl, I was told to go to the hospital immediately (in Walnut Creek, California, USA). It was there that my problems with misdiagnosis began. After hydration, I was given IV insulin. My blood sugar came down so quickly (I am and always have been extremely insulin sensitive) that they had to give me IV glucose. I briefly went into DKA in the hospital. I was seen by an endocrinologist who was a medical school professor at University of California San Francisco. Although he said I was in the "gray area" of diabetes type, in my chart he put NIDDM (non insulin dependent diabetes mellitus, now called Type 2 diabetes), took me off of exogenous insulin, and discharged me from the hospital with a prescription for glyburide. I was sent to Type 2 diabetes education classes. The nutritionist I saw said that glyburide didn't usually work on someone as thin as me, but she didn't explain why not. I read everything I could about diabetes, and it was very clear that I didn't fit the description for someone with Type 2 diabetes but that I did fit the description for Type 1 diabetes. I spoke with the endo about it. The glyburide had no effect and my blood sugar was extremely high. One week after I was hospitalized, I had an appointment with my endo and angrily confronted him and told him I believed I had been misdiagnosed. After some heated discussion, he agreed that in fact I did have Type 1 diabetes and he prescribed insulin therapy. I later confronted the CDE and nutritionist that I had seen during the week of misdiagnosis, and they basically said they knew I had Type 1 but wouldn't disagree with the endo. I was upset that I had not been given appropriate treatment, but thankful that it was only one week that I was misdiagnosed. Since that time, I have met MANY MANY people in the same situation--they were misdiagnosed as having Type 2 strictly because they were adults, when in fact they had Type 1. For a number of the people I have met, the misdiagnosis had severe impacts on their health and resulted in rapid onset of complications. The diabetes medical community clings to the myth that Type 1 diabetes is a childhood disease, and many people are misdiagnosed as a result of the medical community's deeply flawed approach to diagnosing and treating those with adult-onset Type 1 diabetes.
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Permalink Reply by Zoe on -
Type is not always apparent at diagnosis, far from it. If this were the case so many of us wouldn't have been misdiagnosed. When you add to this most PCP's lack of knowledge of diabetes, it is very often missed if it is not obvious. When I walked in the door at 58 years old with a blood sugar of 325 and all the symptoms (but NOT in DKA), still a bit overweight but losing rapidly they said Type 2. If they had noted the weight loss, my previous diagnosis of thyroid disease and then gone on to test antibodies they would have picked up my Type 1 status. Testing is the only conclusive way to establish Type.
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Permalink Reply by AngelaC on -
>> I was upset that I had not been given appropriate treatment, but thankful that it was only one week that I was misdiagnosed.
I wish that had been my case. And I wish I could have gotten an apology from the losers who refused to give me insulin while I was dropping 40-50 lbs on a 4'8" frame in a mere 6 weeks. It took more than 15 years before I got a proper diagnosis. If it weren't for the fact that I was extremely compulsive about my diet and exercise routine, I do not think I would have survived.
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Permalink Reply by Mila on -
Angela, what a horrible story , 15 YEARS ?????.
Luckily you knew how to take good care of yourself.
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Hi AngelaC: I am so sorry for what you had to go through! I do hope that by sharing our stories and teaming together we can change this insanity of misdiagnosis. BTW, the endo I saw in the hospital had the guts to apologize to me. I was shocked, but I do think it allowed me to readily forgive him, and we moved on. He was my endo for years before an insurance change (to Kaiser) meant I switched.
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