When I was diagnosed with type 2 diabetes by the so called health professionals I made it known that there was no history of it in my family. I told them that I had an autoimmune disease prior to the diagnosis but they never even gave any thought to LADA. Thanks to my new Endo I have been finally categorized correctly as type 1.5. Of course as I understand it now I should have been on insulin from the start as the pills never helped much and I ended up being insulin dependent after a couple of years of poor BG control.
Welcome to the club. I was also misdiagnosed as Type 2 based solely on age. I also have another autoimmune condition (Graves Disease) and lost 40 pounds before and after diagnosis. I did fine on the oral meds for 15 months before my blood sugar started to rise and I figured out (with the help of sites like this!) that I was LADA. Today, 6 years in I just call myself Type 1 and only bother explaining LADA when for example my cardiologist talks about my risk factors from having had D so long and I explain I was diagnosed at 58. We were diagnosed less than a month apart and I hope it is getting better for newly diagnosed adult onset Type 1's.
I've read more than once about stories like yours. I wonder if making the medical distinction between T2 and T1 (LADA) is really that hard or if the diagnosing (misdiagnosing?) doctor just didn't do enough tests (antibody, c-peptide) to figure it out.
It seems like your report of a recent autoimmune diagnosis would have triggered the doctor to do a full panel of antibody tests as well as c-peptide. I'm trying to have some understanding for the doctor in this situation but am finding that difficult.
I was diagnosed correctly as T1 as an adult (age 30), but looking back I believe that my blood glucose was fluctuating and high for up to two years before my diagnosis. It's unfortunate that you were misdiagnosed. You now have the opportunity to keep you glucose levels in a better range. Good luck.
Hi Chas: Unfortunately, your story is typical for people with adult-onset Type 1 diabetes, and although there is some progress at getting people correctly diagnosed, the progress is glacially slow. Probably most people with adult-onset Type 1 diabetes are initially misdiagnosed as having Type 2 diabetes, even though it is frankly not that difficult to make a correct diagnosis. If a doctor follows evidence-based medicine, not snap judgments based on myth (myth being "new onset diabetes in an adult = Type 2 diabetes"), a correct diagnosis can be made. I see you are from Canada--one of the Canadian TuD members, Kelly, actually collected stories of misdiagnosis to provide to the Canadian Diabetes Association. Unfortunately for patients, misdiagnosis usually results in undertreatment, which can hasten the onset of complications. And finally, it has been documented for about 38 years that ~10% of "Type 2" diabetics are autoantibody positive (GAD, ICA, IA2, and ZnT8), have been misdiagnosed, and in fact have Type 1 autoimmune diabetes.
I have written multiple blogs on the problem of misdiagnosis, including Doctors Behaving Irrationally and Medical Misdiagnosis of Insulin Deficient Diabetes.
Hi Chas,
Sorry about your misdiagnosis. That happened to me too- I was told I was 1.5 and 2! I wound up in the ICU 3 days later in dka- so it was quickly changed to 1. I would most likely have been properly diagnosed more quickly maybe as my now former doc had done a c peptide but not antibody tests as far as I know. I had had symptoms of fluctuating bg for at least two years prior and other symptoms my whole life such as super carb sensitivity.
I'm fat and old, so 16 years ago they just handed me a meter and a prescription for metformin and told me to lose weight. Took 15 years to correct the diagnosis.
What most GPs know about diabetes wouldn't fill a post-it. We need to work to make sure newly diagnosed diabetics find their way to endos or a good CDE. Most don't.
Melitta - Thanks for providing links to your blog posts regarding misdiagnosis of T1s as T2s. It's a theme here that I haven't followed closely before. I was so lucky that in 1984, a primary care physician in Boise, Idaho, had the good sense to diagnose me correctly as a T1D. It appears than many other adults in my situation were misdiagnosed. I can only imagine dealing with the anger when people finally figure out the truth. Doctors are not perfect but they should never object, or get defensive, when their patients ask probing questions. I have a new appreciation for another facet of diabetes thanks to your writing!
Did you just get on insulin somewhere during that 15 years, profrennie? After 15 months on oral meds I knew I needed insulin, just didn't know why.
On a parallel topic… Have any of you heard of the “accelerator theory” regarding t1 vs t2? The book “Diabetes Rising” has an excellent summary of it and many other theories regarding D.
Can you explain briefly what that is, Sam? (Not to put you on the spot or anything!)
Well the ultra condensed version is that t1 ad t2 are not distinctly seperate conditions, but opposite ends of the same spectrum. The theory is that those most genetically susceptible to diabetes will develop it most readily… Young essentially healthy people, often children… The traditional “type 1”… Those who are genetically susceptible but to a much lesser extent will require quite a bit more circumstances to develop it… Usually older, often overweight, often with a number of other health issues, ie the traditional type 2. The accelerator hypothesis is that they are actually the same condition and more and more we are seeing the middle of the spectrum, where many of us including myself seem to fall; Or type 1.5 LADA. Anyway that’s ultra condensed and dumbed down but there is actually quite a bit of accredited research on the topic which I found pretty interesting. I’d highly reccomend everyone read the book “diabetes rising” the author, a diabetic himself, does a great job of summarizing a lot of fascinating research.
Interesting, thanks; I think I'll get the book. I'm someone who seemed like a classic candidate for Type 2 but then "switched tracks" and became Type 1.
I have not read Diabetes Rising, so can't comment on the book, but I will say that the author is a medical journalist who has Type 1 diabetes, not a diabetes researcher. Certainly the leading diabetes researchers in the U.S. see autoimmune diabetes and Type 2 (insulin resistant) diabetes as distinctly different diseases. Diseases are defined by etiology, and Type 1a diabetes (which includes LADA) is caused by immune-mediated destruction of the beta cells (with autoantibody markers) but Type 2 diabetes is non-autoimmune. It's true that people with Type 1 diabetes can develop insulin resistance, sometimes called double diabetes.
we all know that melitta, that’s why new and differing theories that seem to make sense are interesting!
It's hard for adults to get a type 1 diagnosis. One needs to be really skinny before they consider it. In my case, I had symptoms of diabetes that my previous PCP ignored for 10 years during many visits. Then I ended up getting diagnosed due to extreme thirst etc, and was diagnosed T2. Then when I needed to get on insulin, and was sick as hell from the metformin, it took 6 months to get a doctor to give me insulin (3 months to see a PCP who said my A1C wasn't high enough, and then 3 months to see an endocrinologist). Finally, I had to do a bit of doctor shopping to find someone who would do the right testing to determine that I was T1. By that point, the diagnosis was worthy of a celebration.
And I think I'm one of the lucky ones...I avoided serious health damage.
I read a great quote from a great doctor once, who said that if a doctor will listen, patients will give the answer. In other words, gather the clues from the patient and the answer will be in front of you. That "listening" is what is lacking in this huge problem of adult-onset Type 1s being misdiagnosed as Type 2.
I've now been studying misdiagnosis for more than 18 years, ever since my own misdiagnosis (I had rapid-onset Type 1 diabetes, but was diagnosed as having Type 2 diabetes due to my "advanced" age of 35). Certainly things are now better than they were 18 years ago, but as Scott A and Chas and so many others will attest, misdiagnosis is still rampant (and often with tragic consequences). The problem of misdiagnosis is not due to science or evidence-based medicine, but due to cognitive defect (I am stealing that term from Brian/BSC) on the part of doctors.
Actually no. In fact there was a period when I had no insurance and no medication at all.
I've told the story before here, but what finally happened this year is that I went in for bypass surgery. The resident endo saw my numbers, immediately declared me type 1 and started me on insulin. I've only been on insulin for about a year. I fought it at first, but in the end its made all the difference in the world. Its the first time in a long time I've actually felt healthy.
What did they base the Type 1 diagnosis on? It's highly unlikely you are a Type 1 if you went 15 years without insulin. Many Type 2's also become insulin dependent over time as their bodies stop producing insulin, but that doesn't mean they are then Type 1's.
But bottom line is you needed to be on insulin and now you are and it's made a big difference in your health. So it's all good!
I was positive for antibodies. I do actually have a rather high C-peptide for a type 1. I apparently have more living beta cells than I have a right to.
During the years I was on metformin, I regularly went above 300 mg/Dl but never went into DKA, not even during the period I had no meds.
I often wonder what is really going on. I often think diabetes is thirty or forty loosely related diseases, not two or three. As you say, the insulin is working, and thats a good thing.
I think a good chunk of the problem is also that our medical system has a very strong focus on short term costs. The medical establishment doesn't want to spend the money needed to dig deeper, and PCPs with heavy caseloads can't spend that much time on each patient. I think their perspective is: why run a test if it is only positive a fraction of the time? Additionally, the best medical students tend to become specialists, so PCPs as a group were not the best doctors.
My son is on the autism spectrum, and with those kids it is extremely hard to get doctors/specialists to prescribe tests even for things like seizures with a strong correlation. So I think there's a conscious decision not to give the best treatment to everyone.