Wall Street Journal on the problem of Misdiagnosing Adult-Onset Type 1 as Type 2 diabetes

The Wall Street Journal has published Wrong Call: The Trouble Diagnosing Diabetes. Finally a mainstream newsmedia source sheds light on the problem! They do get some things wrong, such as making it seem "rare" that an adult is diagnosed with Type 1 or that this is something new, but this truly is progress.

Wrong Call by WSJ

Great article on the problem but I'd say it comes up a bit short, in that they seem to shy away from saying "you need a C-peptide test to tell the difference" which, of course, would lead to demand for tests, which might affect the bottom line of WSJ clients like insurance companies?

The WSJ has done a fine job of reporting the story. Textbook journalism really. What is surprising is how the medical community seems to shrug their collective shoulders at developing an adequate solution.

The initial part of the story asks a question that is not answered. Why should it be so hard to get a proper diagnosis, when it isn't hard to do so?

Actually it does say that you need antibody testing to determine Type 1 which is more definitive than c-peptide (though c-peptide is useful as well as additional information).

Yep, Melitta is right and I winced when it said type 1 in adults was rare, or something new and that type 1's are 5-10% of the population, when, if you include the misdiagnosed ones it is closer to 25%. But it is definitely a step in the right direction. I hope there are corresponding articles in medical journals read by PCP's that go into more detail about correct diagnosis procedures (and correct stats!)

A couple of the stats that I don't recall seeing is how many T2s are adults, since more and more kids are getting T2; of the adults that are T2, how many are misdiagnosed and over what time period? Are those sort of stats available anywhere?

I'm glad that there's some interest in educating the public about the different kinds of diabetes. It's a shame that they continue to buy into the notion that a Type 1 diagnosis in adults is rare. Also a shame that they push the "low carb equals low energy" stuff about diet. Even so, this is progress.

One thing that sheds light on how many misdiagnosed Type 1s there are worldwide are studies in which antibody testing is performed on supposed Type 2s. Fairly consistently, in studies all over the world, about 10-20% of the "Type 2s" are antibody positive, have been misdiagnosed, and in fact have Type 1 diabetes. That's a massive number of misdiagnosed.

Reading something like this makes me very grateful my PCP did his job right and what all doctors should do when someone, anyone, presents with diabetic symptoms; he ordered the necessary tests to verify the correct type. Then again I don't fit the type 2 physical stereotype so that may have worked in my favor as well, but it gives me more confidence in his abilities for sure. He said quite a few times that I was likely a Type 1, but can't be absolutely sure without the tests. He went ahead and put me on Levemir to gradually bring down my numbers.

I can't even begin to imagine the frustration of being misdiagnosed and wondering why things are getting better when you (supposedly) know what the issue is. Our doctors need to be better educated and the public definitely needs better education so they know to ask for/demand the proper tests in situations like this.

You know it's funny. I was lucky enough to have the tests done without even knowing to ask for them because I didn't fit the typical profile and had experienced a rapid change in readings. I came back ICA positive. Unfortunately the doc (an endo) who did the test and confirmed I was LADA let me know she was leaving the practice the following week when she gave me the results over the phone. The doc who took over doesn't believe an adult can get type 1. I've since changed endo's and my new one while he doesn't discount that adults can have type 1 feels "you're not type 1 until I've seen you in the hospital for DKA". Looking for a new endo now, and wishing my PCP was comfortable with putting me on insulin. At least she acknowledges she doesn't feel she has enough knowledge about dosing to feel safe with prescribing it for someone in my situation.

Here is a Kovler Diabetes Center blog commentary on the WSJ article. Excellent!

I was one of those that was misdiagnosed by my PCP & was in full blown DKA at the time (I was 26yo). I consider it divine intervention that I got to a Dr that knew better before I actually died. But I was very close. This is such a problem in the Medical community & it angers me that they dont address it better amongst themselves! Just the public awareness that these mistakes do happen, may cause someone that otherwise wouldnt to question their Dr & save their own lives. I will be sharing with everyone I know.

I was Dx at age 55, 13 yo with T-1. I was in DKA (500) and felt really rotten. My endo, at the time never mentioned anything but T-1. Maybe he never heard of LADA, and he never mentioned C-peptide either. I am glad he didn't talk about LADA or T-2, b/c they would have been wrong as my DX.