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 Devon on -
I'll go, as my misdiagnosis is literally 2 weeks old. I started out diagnosed as Type 2 at age 20. I then saw a specialist who diagnosed me as MODY (type 1.5). I then went to a CDE in the same office who told me I was Type 2 and then later said I was Type 1 with Insulin Resistance. I asked for Metformin and after lab work she said I was producing NO insulin and oral medications would do nothing for me. For the last 3 years I've been taking over 400 units of Humalog daily by 14-16 shots a day until 2 weeks ago I saw a new endocrinologist, who said I was Type 2 and put me back on Metformin. In 2 weeks I've gone from 400 units of insulin DAILY to about 60 units a WEEK. I'm still working this out, but I'd say there is some serious mis-communication going on there.
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Permalink Reply by The Diabetic Welfare Queen on -
Have any of these people bothered doing labwork?
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Permalink Reply by Leo2 on -
I think our bodies change. What may be true at one point is not accurate at another. And they change with management, too.
I diagnosed myself as diabetic with need for insulin (above 350 when I ate a piece of fruit). It was enough of a diagnosis for me to go to the doctor and plead for insulin. The doctor I went to thought I was Type 2 - for a month. Metformin, meanwhile, didn't work and I had a GI reaction. My initial management diagnosis had been correct. And I had some insulin resistance in there. I had arthritis at the time and a bit of Sjogrens.
I think there are management diagnoses and then there are the physiological diagnoses by which which we try to explain what's happening. In the beginning of an adult onset, the pancreas can be spitting out spurts of insulin, and the diagnosis is pending.
What works over time and what shows itself over time allows one to say yes, I'm LADA. I have these other manifestations. I'm Type 1 with autoimmunity. But when I get down the carbs so there's never a spike over 140, for me, there are no more autoimmunity manifestations, no Sjogrens symptoms, and I'm just a regular Type 1. No frills. Ask me next week!!!
And did the doctor do lab work? Only fasting BS and A1c. It was enough for me.
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Permalink Reply by Mike Ratrie on -
Kelly,
Good on ya!
I have been simply amazed and angered over the number of people on TU that were mis-diagnosed. I wasn't, but that was almost 37 years ago and I assumed that with the increased #s of diabetics over the years that doctors would have it figured out by now (yeah, I know "assume" makes an ass out of u and me...)
Who are you going to contact once you have your 50?
Fair Winds,
Mike
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Permalink Reply by Bagrat Mamasakhlisi on -
That is good.
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Permalink Reply by Kelly on
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The CDA and ADA first because they set the guidelines that the endos and family physicians follow. Keep the stories coming!
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Permalink Reply by Susi (Ladalife) on -
Just call me Miss Misdiagnosis.
33 years as a T2 only to find I'm LADA. Don't ask how long it took me to get them to test me for LADA. I did, however, get an apology from the Endo, who said I'd been right all along. This was the same one who for 3 years said, "Impossible! You're a T2!". All I wanted was an insulin pump with subsidized supplies (Australia), which I got because I'm now classified as T1.
It had been yet another long and frustrating medical adventure to get tested for LADA, and when I got the results, all I wanted to do was to slap someone REALLY hard.
Add another 8 years of "it's all in your head", until I got a Lupus & Fibromyalgia diagnosis from a Rheumatologist who said she didn't understand why the first two didn't get the Lupus because my blood tests were off from the get go.
I've got stories like this that would fill a book!
I truly hate most doctors and rarely bother going these days unless it's for a script or if I'm half dead from something. Is it any wonder? The hour or so docs get at medical school on diabetes is shameful! On the other hand, my docs now know that when they are absolutely sure it's T2, it isn't always!
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Permalink Reply by Bagrat Mamasakhlisi on
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Tht is right.
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Permalink Reply by Don on
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"I truly hate most doctors and rarely bother going these days unless it's for a script or if I'm half dead from something."
I feel the same way. Ditto, dealing with insurance which is a big part of managing a chronic disease.
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Permalink Reply by Brian (bsc) on -
Well, I don't "hate" doctors, but I do have what I would term "trust issues." Today, after two years of requests, I finally had my GAD65 test. When filling out my paperwork, I was informed that Labcorp did not do MRIs at this location. They had looked up the CPT code and found the first one, happily marking me down for an MRI brain scan with gadolinium for contrast. I was able to correct them, and then I made the nice phlebotomist point out to me the full listed test on her paperwork and show me that she was using a separate blood tube for the GAD65 sample. I have "trust issues." I also haved mixed feelings about knowing the result.
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Oh no! Does this mean that you have to wait longer for the test?
btw - I saw my family doctor yesterday and she's quite accepting of my diagnosis from the endocrinologist. She did say that my antibody test is still not back yet. Can you believe that? My blood was taken on December 21, 2009 and still no dice. Luckily I got my proper diagnosis without waiting. This is one of the reasons why I'm lobbying the CDA. Four months wait to determine your type is completely unacceptable!
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Permalink Reply by Brian (bsc) on
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Not only do I have to wait for the test, but my endo is a control freak. He won't allow test results to be released to me over the phone. I'll find out at my appointment at the end of the month. I'm really surprised you've not gotten your test results. At least you have appropriate treatment.
I've had better blood sugar control over the last three months with the increase to three medications. Once I saw some improvement in my numbers, I buckled down. I've been following Dr. B, exercising more and doing intermittent fasting. I've lost 2-3 lbs since January. It may not seem like much, but it is a difference. I've been able to actually see an occasional two digit blood sugar readings.
Coming up positive would presumably resolve the course of my treatment, but I also realize it may well be negative. Who knows, maybe I am just a type 2 who does not respond well to medication and has progressed rapidly. In either case, I see insulin in my near future.
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