AACE: 80% of misdiagnosed LADAs already had complications in recent study

In a presentation at the May 2012 American Association of Clinical Endocrinologist's (AACE) meeting (article here), investigators reported on findings that ~50% of non-obese "Type 2" diabetics were antibody positive and in fact had LADA (adult-onset Type 1 diabetes). In this study, they only tested for GAD and ICA, so some LADAs may have been missed (at the present time, being positive for any one of GAD, ICA, IA-2, zinc transporter, T reactive cell means the person has Type 1a diabetes). The scariest findings were that the average A1c was 10.2% and 80% already had diabetic complications. Simply treating these people with exogenous insulin would have averted many complications.

Here are some choice quotes:

  • The findings are "a challenge for us to be more thorough and to make fewer assumptions."
    • "We need to be rigorous about defining whether someone has autoimmune diabetes or not, regardless of age."
    • "A reasonable and cost-effective approach is to identify patients who have low insulin levels, and then do autoimmune testing on those individuals, regardless of age."
    • "I think there are a lot of individuals who have Type 1 diabetes who are not diagnosed in a timely manner because of the old way of thinking--that Type 1 diabetes is a disease of the young."

Thanks to Natalie for alerting me to this article!

Thanks ladies !
I am not to sure about all the stats, however I think it is a fact , that type 2's before being diagnosed may already be living with d for about 7 years and consequently have d complications ?? . Bottom line : get self checked , esp those at risk and for us who know : get the message out !! ..

What upsetting stats & hopefully change is on the horizon. If I hadn't presented DKA, I bet my bottom dollar I would have been misdiagnosed.

Although the article only gives averages and percentages, with 100 study subjects, disease duration for the LADAs = 3.2 years, average A1c of 10.2%, being treated with sulfonylureas (the worst possible treatment for a person with Type 1a diabetes), average age 31, with 80% already having diabetic complications. Another quote from the article, "[The LADA patients] need to be on insulin sooner rather than later. These are individuals who need insulin right off the bat."

It served me well to eventually ask GP when diagnosed , Jan 1983 to put me on insulin , which was started in March 1983 .No sub titles , such as LADA , type 1 , type 2 were used in my part of the world then .I had diabetes .The weekly Lab tests showed, that BG numbers did not come down with medication .And thanks to my then GP , that he listened .

Melitta is up front again. If you got an extra minute for my vanity, check out my bragging rights http://www.tudiabetes.org/group/rawfooddiabetics/forum/topics/one-year-on-raw-food-started-the-day-out-of-hospital

Thanks for posting this! I am going to ask for those other tests. I think I have LADA but my dr does not. The PA at my Dr office thinks it is possible and she is actually the one who mentioned this to me. I am 29, I was diagnosed at age 19. My normal healthy weight according to charts is 115-140lbs. When I was diagnosed I was only about 20lbs overweight. I was first diagnosed type 2. I had always had a lot of trouble keeping my sugars down even with diet, excersise and medications. In fact I maxed out on medications. I was always in the 200, 300 and 400 range all the time. My A1C was 10-12% nothing I did got it down. Finally at age 24 I got pregnant but lost the pregnancy. I took time off and got a surprise when in Jan 2008 on my b-day I found out I was pregnant with my daughter. This time I went to a different OB because I didn't like the way the first was treating me. Well the second OB sent me to my currant Diabetic Dr. I immediatly was put on Insulin for the first time since diagnosis. It took about 2 weeks and a lot of careful monitoring but my sugars came under control, I had the best control of my life. I could actually eat a sandwhich! My A1C dropped to 7% in just 1 month. By the time I delivered my daughter my A1C was 5.6%! I kept it really good for the first couple years after I had her. I began to loose my control when she was around 2 so my Dr suggested a pump for me(keep in mind she still considers me a type 2). So to get the pump she did the GAD test and a c-peptide. Well the GAD came back Neg, but the C-Peptide came back 0! I have no Insulin production of my own. But because of the GAD she won't change my diagnosis. She still says I am type 2, however I have had some severe BS drops as in 30, I have times where my BS drops over 100pts. I am only on 25 units of Lantus and still sometimes have drops. I am not a pump at the moment because of insurance issues, however I am training to become a CNA this month and will hopefully have a full time job by Sept so I can get on my husbands insurance, to get on the pump. I really think I am a LADA Diabetic, I do not believe I am type 2. Just because I didn't need insulin right away doesn't mean I am type 2. People get misdiagnosed! And because I have only had Diabetis for 10 years it is hard to believe I wouldn't have any insulin production. My dr tried to tell me I dont' have any because we are giving it from the outside, however my thought on this is if I was type 2 and insulin resistance was my issue my body would still putting out some kind of insulin to get my sugar down. I am thinking of going for a second opinion on this.

Hi DR83: I think a second opinion would be a good idea. Your situation makes me think of a similar TuD member's situation, Kelly from Canada. She had multiple pregnancies in which diabetes was revealed, including a miscarriage, but it took a long time for her to get the correct diagnosis and treatment. Kelly has slow-onset Type 1. The GAD test is not enough; the full suite is necessary (GAD, ICA, IA-2, zinc transporter, and T-reactive cell). Many LADAs are only ICA positive, so just testing GAD would miss those. Also, I wrote a blog on medical misdiagnosis of ALL insulin-deficient diabetes that you might relate to.

Bottom line, I am glad you are on exogenous insulin, because getting the right treatment is the most important thing. Good luck and be your own best advocate!

What is the cost difference between all those tests and the "regular" test? It seems to me that the difference in outcome and complications would mandate that the full suite should become standard but it seems like in many cases doctors are reluctant to be bothered with the full suite and have to be nagged or patients have to go find a new doctor. This is perhaps more complicated in Canada and other countries dealing with a National Health system. If one can say "forget about you doc, I'm going out of pocket..." how much would it cost? I also wonder if this might sort of touch on the discussion we'd had in the Steve Redman thread, where a T2 wanting to row at an internationally competitive level gets to have insulin, to cope with their enormous training diet. Why aren't all T2 given the option, as opposed to entering into the "well, insulin is bad, if you take insulin you lose" sort of dialogue we hear bout? Steve Redman seems relatively jolly despite being on insulin?

W/ T1, my answer has always been to take enough insulin to keep my BG in line. This caused it's own set of problems for me when I didn't have a plan but, once I discovered that (when I decided I got a pump and pretty much read TLAP/ Pumping Insulin and began reading up online for how people "did it"...) but a lot of T2 don't get or are even discouraged from the "Olympic Option"?

The street price for a full antibody panel is $300. This is compared to a standard VAP cholesterol panel of $145. My doctors order cholesterol testing with wild abandon, mostly in ways that are clearly wasteful. Cost is not an issue. I think that most doctors just don't have a clue.

Perhaps but for someone who's in their 20s and hit w/ elevated BG and has shaky insurance, blowing $300 on an out-of-pocket test may be an issue? I'm very lucky that I don't even pay attention to what pumps, infusion sets, test strips, etc. cost and just put it on my "tab". If say such a patient walked into the hospital on say "House" or "Grey's Anatomy", the doc would just do the test since medical cost issues don't appear on those sorts of situations but I think that part of the medical issue is that doctors and insurers can characterize people who want to know what their diagnosis is, because they read something online, as being "wing-nuts" and rx them (cheaper) psych meds when really, people in the situation you were in have to take matters into their own hands, which sucks.

Here's a rather long recent article in the New Yorker about how inefficient our health care system is. It looks at how methods used to promote efficiency in other industries could be/are being applied to medicine. Interestingly the industry used as as example is the chain restaurant industry. In the context of the present discussion a standardized method would be applied to the treatment of the newly diagnosed to remedy what is obviously a problem. Bottom line too many Dr.s don't even know what the correct protocol is and there is no efficient method of disseminating this information to them.

Again and again, both researchers (including these researchers published in AACE) and doctors say that "antibody tests are too expensive" to be done on all newly diagnosed PWDs. But as Brian says, the test is $300. Since 80% of the LADAs in this study already had complications, and complications are extraordinarily expensive to treat/manage, I believe autoantibody testing is quite cost effective. Also, it's not just complications, it's DKA that can leave a person in ICU for a week (that has happened to at least one TuD member who was misdiagnosed as Type 2 and denied insulin). Unfortunately, there is not a "correct protocol" for diagnosing Type 1, which does lead to a lot of these problems.

My first insulin pump trainer, who has Type 1 diabetes, went to her GP prior to diagnosis and told him her symptoms. He sent her to a psychiatrist. She remained undiagnosed and untreated, and went into DKA and a coma (thankfully, her boyfriend found her and got her to the hospital). Only then did she get appropriate treatment.

Good article! It would be interesting to see how the sort of "new medicine" (or "new medical business?") approach would work in an endocrinology department? I agree about doctors approach to the protocol varying. For a long time, I'd just sort of sashay into the doctor's get an OK A1C and sashay out. Eventually, I had a GP who'd recommended the more modern insulins and/ or a pump but didn't really push it.

In a lot of the cases, it seems like the members (e.g. BSC...) are doing "ok" by the doctor's standards but have researched enough to get their own standard and want to make changes, whatever they might be, to get their results where they want them, in or close to a "normal" range, which should be the doctor's goal but they are so used to failure that they don't seem to bother?

I do agree that, at least in the case of T2, Dr.s "are so used to failure that they don't seem to bother" It is an article of faith that T2 is a degenerative disease and so when the patient degenerates no one is surprised. Patient apathy is also a huge factor.

The article does show what a mess our current system is. Change will have to come because the increase in cost's is unsustainable. It would seem the right kind of change could result in better care and decreased costs. A lot of this is really low hanging fruit if the correct mindset is adopted.

I agree with BSC.... so tired of having cholesterol etc. tested every 3 months when I've never had a problem. Certainly, at the very least, every person with diabetes deserves to know if they are producing enough insulin.

I agree with everything said. Let me add to your apathy statement BadMoon. Last time I saw my endo we were discussing my OCD (which he totally approves of), and he said that 90% of his patients who abandon their CGM do so because they find it annoying that it keeps alarming - they have their high alarm set for 200. I can't comprehend....

Perhaps what's needed is an OCD pill to take with your metformin:)

= OCD pills