For the next few days, the diabetes the online community is rallying around "LADA Awareness Week" to call attention to Latent Autoimmune Diabetes in Adults. This is obviously the type that turned my own life upside-down.
We know there's some controversy about the specific definition of this type of diabetes (see my own definition post + comments), so we decided to query some leading experts from around the country for their thoughts on this nebulous strain of diabetes...
Not surprisingly, we discovered some differences of opinion in how LADA is described, standards of care, and possibilities for beta cell preservation. Overall, there are lots of good insights here, that we hope will be eye-opening to you, too:
Anne Peters, MD, CDE
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Director of Clinical Diabetes Programs at USC
"I don't think there is an official definition of LADA. It is simply autoimmune Type 1 diabetes with onset in adulthood. Usually antiGAD antibodies are positive. Generally it is a clinical diagnosis — a lean, new onset 30-year-old even with negative antibodies is still likely a Type 1 (antibody negative LADA). In my experience it seems to progress more slowly that Type 1 in younger individuals with more antibodies positive. In LADA patients can still have measurable C-peptide levels for many years after diagnosis, and may have lower insulin requirements."
So why the controversy?
"Because it is not defined yet — it probably has it's own genetics and autoimmunity to it, an overlap with 'classic' Type 1 and even possibly with Type 2... But currently definitions are less important than treatment, which is with insulin, like a 'classic' Type 1, so clinically we care less about the name and more about the whole patient."
[Editor's note: Amen!!]
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Steve Edelman, MD
University of California San Diego, director of TCOYD
"To me, LADA means Type 1 diabetes developed later than the classic childhood ages. But ALSO it is much tougher to diagnose and is missed a lot because there is slow beta cell destruction, so people do not crash and burn in the ICU due to DKA. Caregivers think they have Type 2 because of their age, and they may also respond to oral agents but generally very poorly and eventually go on insulin and behave like a typical Type 1."
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Francine Kaufman, MD
Chief Medical Officer and Vice President, Global Medical, Clinical & Health Affairs at Medtronic Diabetes
"Essentially LADA has elements of Type 1 and Type 2 diabetes, and by definition must have onset in adulthood — like Type 1 antibodies are present, Type 1 and Type 2 genes have been described, and like Type 2, insulin treatment is not imperative at diagnosis.
"There is no doubt that there is a much more indolent immunologic process that is injuring beta cells, compared to Type 1. I personally characterize anyone who has diabetes and antibodies as having at least Type 1, and LADA may also have elements of Type 2. There is a question of even though they don't immediately require insulin — are they better off receiving insulin as a means to preserve beta cells? I agree that insulin should not be withheld from people with diabetes who have antibodies, in the hopes (still investigational) that it will have beta cell preserving capability. Since LADA patients do require insulin at some point, might as well initiate it at diagnosis. What is not known, is how other agents, particularly GLPs, might impact LADA."
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David Klonoff, MD
UC San Francisco
Editor-in-Chief, Journal of Diabetes Science and Technology
"It is important to correctly diagnose LADA in adult patients with new onset of diabetes to identify patients at risk of losing beta cell function, who should be started on insulin early (rather than oral agents) to help preserve beta cell function."
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Bruce Bode, MD
Atlanta Diabetes Associates
JDRF Research Team/ CGMS
"LADA is just a subset of Type 1 diabetes occurring later in life. IT IS TYPE 1 DM!! NOTHING MORE OR LESS. We see Type 1 presenting all the time in adulthood but most primary care physicians and even endos and CDEs miss it, thinking it is burned out Type 2 diabetes.
"All patients presenting the hyperglycemia that is not classic Type 2 diabetes (obese, direct relative with Type 2 DM, no weight loss) should be screened for auto-antibodies to the Islet cell or insulin (ICA, GAD, IA2, IAA, and Zn T - autoimmunity marker tests). If positive, treat as a Type 1 with multiple daily injections or insulin pump therapy. If negative, still treat with insulin if symptomatic then revert to metformin plus incretins, with or without a TZD drug.
This should be standard of care but it is not."
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Daniel Crowe, MD, CDE
Medical Director-Diabetes Program
Southboro Medical Group, PA
"LADA is a favorite topic of mine. I always think of it when I see patients referred to me who don't fit the Type 2 phenotype (apple-shaped body) who are having trouble with controlling their diabetes. The first test I order is a C-peptide (measures how much insulin is still being produced by the patients own pancreas) and a panel of autoimmune tests looking for antibodies directed against the pancreatic beta cells. I am always surprised how often we turn up patients who have been labeled Type 2 for years.
"I have LADA patients who are antibody positive but are still producing insulin. We follow them closely, ask them to report asap if their sugars start to climb and do not respond to their current treatment (indicating they may have reached the tipping point of becoming a Type 1), train them to check ketones if their sugars are high and report any positive tests, and recheck the C-peptide periodically.
"We just diagnosed an antibody-negative man who had been labeled Type 2 for years but had two children with Type 1 and had become insulin-requiring in the last few years. He is technically a Type 1b because he now has lost his intrinsic insulin production (converted from normal to low C-peptide) but has no antibodies to the insulin-producing cells in his pancreas. We used this to appeal to his insurance company who just informed us they are approving a Dexcom for him."
Type 1a = Type 1 with antibodies ~70% of Type 1's
Type 1b = Type 1 without antibodies ~30% of Type 1's
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Susan Guzman, PhD
Director of Clinical Services
at the Behavioral Diabetes Institute (BDI)
Some of my observations of people with LADA who come to BDI:
1) There are often intense feelings around having been "misdiagnosed" as Type 2: anger with the physician, frustration with the medical community for not recognizing this Type of diabetes, the "wasted" time they spent on orals, and relief when properly diagnosed (both because they now have an answer to why the oral meds didn't work, but also some relief about not being Type 2).
2) A sense of not really fitting in to either diabetes "groups" — some because they identify as Type 1.5 instead of Type 1. Others say that they don't relate well to the Type 1s who have had diabetes since they were young. Many talk about not knowing whether they "belong"** at JDRF because they were diagnosed in adulthood. There seems to be a sense of loneliness associated with this diagnosis.
3) The "set up" of the long honeymoon often associated with LADA — because when diagnosed with LADA the person may still have beta cell functioning, they can achieve lower A1cs more easily. Over time, when this changes, their diabetes becomes a lot more challenging and difficult to manage. The problem is — they have already experienced good control with less effort. And, during this time they have probably gotten a lot of praise from their healthcare providers for these "good" numbers. The problem is, their beta cells continued to decline and diabetes management gets a whole lot tougher. This can lead to unrealistic expectations for their a1cs and even hyperglycemia fear. They still want that praise for "good" numbers and now that they aren't achieving those very low A1cs, they fear what that means for their risk of complications.
** We sure as heck hear you on Feeling Displaced as a LADA!) **
Thanks to each of our expert voices for their thoughts here. Let us know if you have specific questions for these luminaries, and we can gladly pass them on.
btw, more info and links on the topic can be found in our coverage of LADA Week from last year.