Diabetic Living States “Misdiagnosis Is Not Harmful” for People with LADA

Community Share Your Stories
1

Diabetic Living’s website has an informational slide show about Latent Autoimmune Diabetes in Adults (LADA) ("What is LADA?" by Caitlin Thornton) that is harmful and unscientific. Some of the information is correct, but much has no scientific or medical basis. Thornton is also the author of Diabetic Living’s “Could Your Type 2 Diagnosis be Wrong?” (Fall 2010), which contains much of the same misinformation. I continue to be amazed that otherwise rational people promote substandard care for people with adult-onset Type 1 diabetes/LADA.

To Diabetic Living’s credit, they spotlight LADA and discuss the problem of misdiagnosis as Type 2 diabetes. But then they veer off into some wacky territory that is harmful to people with adult-onset Type 1 diabetes.

First, LADA is autoimmune diabetes which is Type 1 diabetes, according to the World Health Organization and the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus. Even DL says, “A diagnosis of type 1 later in life is sometimes called Latent-Autoimmune Diabetes in Adults (LADA).” However, more recently, diabetes researchers have discouraged the use of the term latent autoimmune diabetes in adults, because LADA is not a latent disease. A more descriptive term for all diabetes caused by immune-mediated destruction of the beta cells is autoimmune diabetes.

Here’s what Diabetic Living has to say:

DL: Misdiagnosis is not harmful.

FACT: Misdiagnosis (diagnosing a person with Type 2 diabetes when in fact they have LADA/Type 1 diabetes) is extremely harmful and can result in rapid onset of diabetic complications and even death due to diabetic ketoacidosis. I challenge the author of this statement to say those very words “misdiagnosis is not harmful” to the family of the Pennsylvania woman who was misdiagnosed as having Type 2 diabetes when she had LADA. This woman died of diabetic ketoacidosis (DKA), and her daughter said that the woman’s doctors had never heard of LADA. I challenge the author of “misdiagnosis is not harmful” to say those words to the study subjects of Tan and Lim, 2001, (“Latent Autoimmune Diabetes in Adults: A Case Series”) people with LADA who were denied insulin therapy: their average BMI was 17.2 (kg/m2), considerably under the BMI of 18.5 that is considered underweight, and their mean HBA1c was 14.3% (mean average blood glucose of 390 mg/dl), which indicates serious hyperglycemia. Two of the subject patients already had multiple diabetic complications due to poorly controlled diabetes. Would these study subjects agree with Diabetic Living that misdiagnosis is not harmful? All too frequently, Type 1 adults who are misdiagnosed as having Type 2 diabetes receive inappropriate treatment for the disease they have, as in the case of the subjects of this study who simply should have been given insulin to save their lives. ALL people who acquire Type 1 diabetes should be put on exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, and reduce the possibility of diabetic complications.

DL: LADA is treated like type 1 and type 2 diabetes. Latent autoimmune diabetes in adults is an autoimmune disease -- the body attacks itself by destroying beta cells, which produce insulin in the pancreas. But unlike people with type 1, people with LADA often don't need insulin right away. "It's an immune process that is not as quick as it is with type 1," says Sally Pinkstaff, M.D., Ph.D., an endocrinologist at Sinai Hospital in Baltimore. "Patients [with LADA] may have some insulin resistance, but they still may have beta cells in the pancreas. They can start treatment with oral medication like a person with type 2."

FACT: An abundance of scientific studies indicate that the appropriate treatment for LADA and any Type 1 diabetes is intensive insulin therapy as early as possible. In ALL people with Type 1, both rapid onset and slow onset/LADA, the earlier that intensive insulin therapy is initiated, the better the preservation of remnant beta cells, the better the outcome. The evidence is substantial. The evidence is also substantial that many Type 2 treatments hasten the beta cell destruction in people with LADA.

What to do: Follow the Hippocratic Oath. Put all people with Type 1 diabetes on intensive insulin therapy as quickly as possible. David Klonoff MD, UC San Francisco, and Editor-in-Chief of Journal of Diabetes Science and Technology says, “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” (DiabetesMine.com, October 19, 2011).

DL: The LADA honeymoon can last for years. With latent autoimmune diabetes, the honeymoon phase -- the period when blood sugars can be controlled without insulin therapy -- can last for a year or much longer.

FACT: Frederick Allen, prior to the discovery of insulin in 1922, kept children with Type 1 diabetes alive for more than 5 years following diagnosis—the childhood-onset Type 1 diabetes honeymoon can also last for years. Now that we have insulin, why not just give people with Type 1 diabetes the life-saving insulin they need? In the 1970s, some children were put on sulfonylureas following diagnosis. In other words, childhood-onset Type 1 diabetes was treated like Type 2 diabetes, just as Diabetic Living says LADA can be treated like Type 2 diabetes. But treating Type 1 children as if they had Type 2 was not the right thing to do then, and denying insulin to a newly diagnosed LADA is not the right thing to do now.

DL: There are many unanswered questions about LADA. The medical community has yet to establish several concrete conclusions about latent autoimmune diabetes in adults. For example: Is type 1.5 diabetes an accurate descriptor for LADA? Or is it really just type 1? Some argue that 1.5 is incorrect because LADA is an autoimmune disease -- the only thing that relates it to type 2 is beginning treatment with non-insulin meds. Others say LADA may have as much in common with type 2. "There is research that shows type 1 is different from LADA," says Concepcion Nierras, Ph.D., a research director at the Juvenile Diabetes Research Foundation International (JDRF). "For example, we know that type 1 genes are different from type 2 genes. The gene that plays a role in LADA is a type 2 gene.”

FACT: Both children and adults with Type 1 diabetes also have genes for Type 2 diabetes. The genes that play a role in childhood onset and adult onset Type 1 diabetes are HLA DR3 and DR4, not Type 2 genes. JDRF’s Dr. Nierras makes this statement not based on fact, but because JDRF has long wanted to promote Type 1 diabetes as a childhood disease, and by admitting that autoimmune diabetes (LADA) is Type 1 diabetes, it means that childhood-onset Type 1 diabetes is a minority of Type 1 diabetes. However, more recently and in great contrast to Dr. Nierras’s statement, JDRF’s Bruce Bode MD says, “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” (DiabetesMine.com, October 19, 2011).

If we have the treatment available for Type 1 diabetes/LADA, why should we do anything other than appropriately treat the disease? Why should we let a strange mindset, that denies the existence of adult-onset Type 1 diabetes and wants to declare Type 1 diabetes to be some exclusive domain of children, override the scientific facts? After all, Mary Tyler Moore, chair of JDRF International, was diagnosed at age 33. Let’s dispense with myths that do great harm (“Type 1 diabetes is a childhood disease” and “LADA can be treated like Type 2 diabetes”) and apply scientific rigor to the diagnosis and treatment of all autoimmune diabetes.

2

WOW! I wish any of my doctors knew anything about LADA. I can and have never been sure of my type. I was sick with prediabetes from puberty (about 13) and was not diagnosed until I was 19. I was diagnosed as type 2, and survived two years on oral meds before falling sick with DKA. I died in the hospital on November 2nd, 2007, and was fortunately revived, but not expected to recover. Through intensive and aggressive insulin and potassium therapy, I managed to walk out of the hospital on November 12th, 2007. I left, finally diagnosed as an insulin dependent, type 1 diabetic. I have been living as such, with adequate treatment, ever since. My blood sugars are under control, and I was finally able to conceive (I am now 14 weeks and 2 days pregnant with my first child). I suspect I may have LADA, though I have never had a conversation with my doctors about it. If LADA is a form of type 1, I haven't really seen a need to augment my treatment- it would just be nice to have some answers about why I was not receiving proper treatment, and why I almost had to die to get it. The doctors who saved my life could not figure out why any doctor would think I had type 2 diabetes, and after going through my medical history, told me that it was glaringly obvious that I'd been living with type 1 for quite some time before finally succumbing to the complications.

3

I saw this title and nearly screamed out "WTF?!" in horror. There's a bit of a catch, though: in its early stages, LADA not only presents as T2DM (lower, more-controllable BGs and A1cs, responsive to oral medications), but the key tests that would confirm a T1DM diagnosis -- c-peptide and GADA -- come back negative until the end of the honeymoon period. This means that a family physician -- the usual only-point-of-therapeutic-contact for people with T2DM -- is acting in accordance with his (admittedly limited) experience and training. (See my post on LADA at http://www.dlife.com/diabetes-blog/type-1/hidden-plain-sight-lada-conundrum.html) The problem is that family physicians and their patients may be so wedded to the T2DM diagnosis by then that they do not see beyond it, and hesitate to initiate intensive insulin therapy.

That said, IF a patient with LADA is placed on intensive insulin therapy, is there any problem for the individual PWD if he or she is labeled as having "insulin dependent type 2 diabetes " rather than "type 1 diabetes" or "LADA"? (This is not to say that the issue doesn't exist as regards the documentation of adult-onset autoimmune diabetes, latent or otherwise... just that the individual is getting the appropriate therapy, i.e., insulin.)

4

I think I can offer my $0.02 here, as I was misdiagnosed on paper but got all the right treatment. My 'official' type has changed several times over the past year (and is still different depending on who you ask) but there has been no change in my therapy. Depending on where you live, a T1 diagnosis makes it easier to get insurance and supplies. I live in the UK where it makes no difference what 'Type' they call you. All people using insulin are given the same help with diabetes supplies. But in some countries it makes a big difference. There is, also, for some people, a huge psychological difference.

5

Ok, I don't disagree with the criticism here. But let me also note that while the author did say "misdiagnosis was not harmful." The statement was made based on the suggestion from the experts that "Doctors should intervene sooner with insulin, if it is needed, whether the patient is type 2 or LADA" (endocrinologist James McCallum). The author is not an expert in the are and "presumed" that doctors act upon the suggestion of Dr. McCallum, but we know they don't, withholding insulin often until the very end with the patient in the ER.

The author of the article was Caitlin Thornton, (not Caitlin Thronton, have mercy on her the messed up her name). She is young and only graduated in 2010 from Drake. She was an editorial apprentice at Diabetic Living. Don't criticize her, criticize the editorial work. And while the language is unfortunate, it was actually not filled with the total cr*p we might see from someone like Hope Warshaw who should know better.

6

Thank you for highlighting this. I think I saw that DL piece and was similarly perturbed.
I found your rebuttal compelling and insightful!

7

Thanks for your comments. Brian/bsc, I corrected the spelling of the author's name, thanks for that catch. And of course the bottom line, most fundamental, most important thing is that people be treated with insulin therapy; a correct diagnosis is secondary. But as bsc points out, most doctors are reluctant to initiate insulin therapy (they have a worse fear of insulin than the patients!); Lila, as I have said before, you were really fortunate to get correct treatment. Tmana, I have to disagree: the antibodies are indicative of the autoimmune attack, they are usually present at diagnosis and before diagnosis, certainly not just after the honeymoon. And LADA is definitely not limited to the GAD antibody; in a recent study I read, more than 50% of people with adult-onset Type 1 were ICA positive, and a smaller percentage were IA-2 positive (that's why I always encourage people to get the full suite of antibody tests, because if you only test for GAD you miss the LADAs who are only ICA positive). Finally, c-peptide in newly diagnosed T1 adults will usually be low or low normal; it may be subtle but an aware doctor (or CDE or patient) should catch that. In the print article that Ms. Thornton wrote in Diabetic Living, she used the phrase "misdiagnosis is not the end of the world" instead of "misdiagnosis is not harmful."

8

Melitta, I got the info on GAD from doctors in the course of social conversation at an Alumni Association event for my school. Before that, I had presumed that all T1s/T1.5s would show positive for GADA. If GAD antibodies are present but undetectable during the early part of the honeymoon period, then the standard suite of tests is insufficiently sensitive and a different (or better) testing procedure is required.

9

I can speak from experience here. When I was diagnosed as type 2, I was not told a thing about LADA- merely that I was too young to have “self-inflicted diabetes”. It was beat into my brain by doctors that I genuinely did not want to “jump types and become insulin dependent.” I was put into diabetes daycare classes with people who were all at least 10-15 years older than myself and extremely overweight. I couldn’t relate to any of them. And nobody ever took the 5 minutes to consider I could be type 1. I was terribly sick all the time on oral meds and dropped 130 pounds over that two year period before DKA. My doctors all patted me on the back for being so healthy and working do hard to lose weight. Being less than 150lbs and 6’1" was not an attractive thing. I looked jaundiced and tired. Most recently I was at a CDA conference where I was informed that Type 1s in my age group have the highest mortality rate of all diabetes. Here there is definitely a psychological stigma to being a certain type. And a misdiagnosis can limit your access to the meds you need, or adequate coverage.

10

Hi Lauren: I completely agree with you! I actually wish we could dump the term LADA, it's just Type 1 autoimmune diabetes.

11

I never refer to myself as LADA, so I have to agree. I just tell everyone (including my doctors) that I am type 1. They don't seem to care about the difference, and the treatment has been very successful. But it was made quite clear that my diabetes was autoimmune and genetic.