June 19, 2009

LADA: The Epidemic Your Doctor Doesn't Know About

The past few weeks my inbox has been filled with letters from desperate people with diabetes whose doctors have completely failed them.

They have blood sugars that continue to climb no matter what they eat. They ask me why when they eat no carbs at all their blood sugars are still over 140 mg/dl hours after a meal.

They are on all the oral drugs and sometimes even Byetta, but their blood sugars still go into the 300s.

Some have histories of Gestational Diabetes that came on when they were thin. Some gained a lot of weight very recently but were normal weight before that.

All have relatives with diabetes. Some have relatives with Type 1 diabetes. Most have relatives with other autoimmune disease.

And all of them, it turns out, though diagnosed with Type 2 diabetes and given the miserably ineffectual medical treatment doctors give people with Type 2, turn out to have LADA.

This isn't a guess on my part. Quite a few are writing to me after finally convincing their doctors to give them C-peptide tests or antibody tests. Others are responding to tiny doses of basal insulin which would not do anything for a person with Type 2.

I know that the reason I hear from so many people with LADA is because I discuss LADA on my web site, HERE. There is almost no other information on the web about slow adult onset autoimmune diabetes, so it makes sense that when people are finally diagnosed with it, they let me know.

But my impression that there is a hidden epidemic going on is not just because of all the mail I get. There are plenty of people with LADA posting on TuDiabetes.com and the other diabetes boards.

Most of the people who have a relatively easy time getting diagnosed with LADAs are young and thin. That is because their weight sometimes (but not always) raises the suspicion in the minds of their doctors that they don't have Type 2.

But the people I hear from who are having a really tough time getting a proper diagnosis are those who are struck with autoimmune diabetes in middle age, after they have experienced the usual middle aged weight gain that 95% of the normal population experiences. Because they are overweight, doctors refuse to consider the possibility that they don't have the kind of diabetes they mistakenly believe is "caused by obesity." (To read why they are mistaken, read THIS.)

If you are 20 lbs overweight when you develop autoimmune diabetes, the chances are very good you will not get your diagnosis of LADA until you end up in the ER with Diabetic Ketoacidosis (DKA), a condition so serious that if you do not get to the ER when you have it, you are likely to die.

I'm hearing from people misdiagnosed with Type 2 who have ended up in the ER with DKA. People with real Type 2 do not get DKA though if their blood sugar rises high enough they can develop another dangerous condition called hyperosmolar hyperglycemia which also requires hospitalization.

There has been a huge increase in the incidence of all autoimmune conditions over the past decade. The number of children with Type 1 diabetes is predicted to double over the next decade. (Details HERE.) It has already much more than doubled compared to its incidence even 30 years ago.

Researchers have also documented sharp rises in the incidence of many other autoimmune diseases including autoimmune thyroid disease, rheumatoid arthritis and multiple sclerosis.

Why? No one knows, and very little effort is being invested in finding out, because there isn't money in it for investors. Not only that, but the chances are very good that the toxic contamination of our air, water, and food supply by industrial chemicals, pesticides, pharmaceuticals,and plastics may have something to do with it. Which is not something industry is going to pay money to learn.

Whatever the explanation for the huge rise in the incidence of authoimmune conditions, it is time someone educated physicians about slow onset autoimmune diabetes a.k.a. LADA. Misdiagnosing people with LADA exposes them to years of debilitating poor health. In fact the one thing that everyone with LADA who writes me says is how exhausted, wretched and sick they felt through the years when they were misdiagnosed.

Patients with LADA are not producing insulin and their cells, including brain cells, are starving. They need basal/bolus insulin regimens, and they need them as soon as possible. They also need high quality diabetes education that will teach them how to use insulin properly to maintain good control and avoid hypos.

Studies have shown that on average it takes 4 years for a person with LADA to get to where they are completely insulin dependent--and likely to develop DKA without insulin. For too many of these people, those 4 years are being spent receiving the mediocre treatment (or lack of treatment) doled out to Type 2s. They are told to lose weight. They are told to exercise and eat low fat diets. They are given oral drugs and told to keep taking them even when they are having no effect on blood sugars.

If you have a family history of autoimmune disease or a form of diabetes that is not responding well to carb restriction and oral drugs, read THIS PAGE. Write down the names of the three kinds of antibody tests. Demand that your doctor order the antibody tests and a C-peptide or fasting insulin test.

Don't believe it when a doctor tells you that you are a Type 2 unless you show near normal amounts of C-peptide and despite having diabetes for a year do not have any diabetic antibodies. (The antibody tests may be negative until you have had autoimmune diabetes for a while.) If you are given Lantus and your fasting blood sugars responds to a dose that is less than 30 units, consider asking for C-peptide tests too. Typical doses of Lantus that will have an impact on someone with classic Type 2 diabetes range from about 30 to 100 units a day with the very low dose only found in people who are small and eating low carb diets.

If your doctor won't order these tests, find a new doctor.

My guess is that there is a hefty chunk of overweight people diagnosed with "garden variety" Type 2 who actually have autoimmune forms and who would benefit from insulin supplementation. The most recent statistic I saw was that something like 8% of people diagnosed with Type 2 turn out to have diabetes-related antibodies. It is not impossible to be insulin resistant and to have an autoimmune form of diabetes. But all people with autoimmune diabetes will, after four or five years show lower than normal levels of fasting C-peptide.



Carol said...

Thanks for posting about this! I learned I had diabetes when I was 27 and weighed under 110 lbs (and dropping). My (now former) GP was clueless and so was I at first. Tried exercising and dieting it away + a a variety of oral type 2 drugs. Finally went to an endoc, who immediately pronounced me type 1 and started insulin. I'm lucky not to have wound up in DKA, but it is scary that that the GP didn't know enough to see the obvious from the beginning.

Diabetes Nurse Tim, CDE said...

We have had a couple of LADA "Type 1.5" who presented as the atypical type 2. Thinner and non-responsive to nutritional intervention and oral medications. You can spot some LADAs a mile away because they are thin but have really high Blood Glucose numbers. We notified the MD 3 times and he never changed the med regimen despite poor control.

Jenny said...


What is starting to really get to me is that these doctors are being paid HUGE amounts of money to treat their patients. And they are completely failing, but the system is set up so that they pay NO price for their mistakes.

What other field operates like this (apart from top corporate management?)

Anonymous said...

I was given meds without regard to physical appearance and my non-typical classic T2 blood work results. I was fortunate, my mom is an RN and she insisted I refuse that treatment option.
In my case, I am still classified as T2 but I strongly suspect my HLA DR4 / DQB1*0302 (DQ8) has a lot to do with my 'type' of diabetes presentation. Even without the antibodies I lean more towards an LADA diagnosis than classic T2. A lot is yet to be learned and the knowlege in the general physician's office isn't what it should be IMO. The lack of education is dangerous to many patients like myself. Thanks Jenny!! Information on the web has be key.

sooz said...

Jenny you know my story, but I feel I should repeat it as a comment, under your most excellent article.

I was dx with T2 in 1978. I was dx with LADA in 2009, some 31 years later! Both back then and now, I didn't fit any profile other than T2. I'd been 5-20 lbs overweight during that time. I responded to T2 meds, but was allergic or had bad side-effects, so was put on insulin about 4 years ago.

The only reason I was tested was because unless you're a T1 in Australia, insulin pump supplies aren't subsidised (and therefore are expensive). I'd known about LADA for quite some time. On several occasions I'd asked both my GP (family doctor) and Endo if LADA were possible, considering I already had another autoimmune disease. Both said an emphatic NO.

In January this year, I said to my endo - what could it hurt to eliminate LADA so I know for sure I can't get an insulin pump? He agreed. The three of us were gobsmacked at the positive GAD antibody test and much lower than normal c-peptide. In retrospect several elements of my diabetese now made sense.

The rest is history. This is my 3rd week on an insulin pump and I'm absolutely loving it.

I'm here to say that you can have both T2 and LADA. And this will be the thing that will stop doctors from testing you - if you do have insulin resistance to whatever degree, you'll be assumed to have T2 and that will be it. In my case, I was very lucky.

In years to come, they will no doubt discover that there are so many variations of diabetes that they will all be properly classified, and testing will become routine.

Trinkwasser said...

What's really scary is the HUGE difference of knowledge between doctors. Some are simply unable to see past the dogma that Type 1s must all be children (emphatically not true) and all adults must therefore be Type 2. Others are comparatively clueful.

In one horror story, someone with obvious symptoms of LADA who had been put on insulin by her GP or nurse and was doing remarkably well was actually taken off it by an Endo and put on metformin and other Type 2 meds, none of which did any good, and told that her A1c which went up over 8 was "good". It took nearly a year before anyone listened and put her back on the insulin despite her rapidly rising BG levels. All because she was middle aged and slightly overweight.

Krista said...

Thankfully, my endo doctor knows about it and has now diagnosed me as a type 1.5/LADA instead of my original diagnosis of type 2. And, it only took 9 months! The C-peptide test and GADA test confirmed LADA. But, what worries me is that this new Endo has prescribed Januvia and taken me off metformin er - 1500 mg/day (was only seeing marginal effect on sugars after 9 months). I'm concerned about the safety of Januvia...any thoughts?

Jenny said...

My reasons for thinking Januvia is a very dangerous drug can all be found here: http://www.phlaunt.com/diabetes/18538604.php

with lots of citations and documentation to back up my concerns.

Krista said...

Thanks, Jenny. It was your blog page on Januvia that set me off and I've contacted my primary Dr. for a second opinion on Januvia. The other treatment option presented to me by my Endo was night-time Lantus. The latest news on Lantus isn't good either so I feeling like my choices, beyond low-carbing and exercise (which I already do and will continue to do) are so limited. What about Januvia taken with metformin? I saw a marginal improvement is sugars and HbA1c with metformin er.

Jenny said...


You could just as well use Levemir. It's the other basal insulin. It has a shorter action time in people who use small doses, so you can use a morning and evening shot.

Metformin could lower your dose of insulin slightly. Januvia is just forcing your beta cells to secrete insulin. There is no clear evidence it rejuvenates beta cells, but the salesweasels are telling doctors it does.

There's some question about whether secreting more insulin in the middle of an autoimmune attack is smart.

Belvasis said...

I was first diagnosed as Type 2. Because i often have to opportunity to talk to doctors, there was a lot fo discussion about it. Some said it must be Type 1 others said it depends etc. I got some oral medicals and in the first year all went well until some weeks ago. My doctor then made the right test and now i'm LADA and will get insulin. What i don't understand is, why my brother got diabetes the same time as i and he is also stated as LADA since some weeks. That's mystic. In our familiy there is and was no diabetes ever.
So how did it come to this? Is something known about it?

Jenny said...


There is a huge epidemic of all kinds of autoimmune disease spreading around the world.

No one is quite sure why and there are many hypotheses, but my guess is that decades of pollution in our air, water, and food with organic chemicals like pesticides, pharmaceuticals, PCBs, and plastics which are now in most of our blood streams in shockingly high quantities plays a part.

Organic chemicals can switch on receptors and cause the body to get mixed signals.

The invasion of our food supply by soy which is known to provoke allergic reactions in the gut may also be involved.

But it is probably a mixture of causes.

Anonymous said...

I recently found two articles in PubMed indicating that Vitamin D can slow progression of LADA. Early times, not huge studies, but the speculation is there.

Add me as another recent LADA after a T2 dx ... I was in DKA, after 4 wks of weight loss and other symptoms, have had autoimmune thyroiditis for over a decade, and normal Trigs, but I was a fat old lady of 51, 180 lb so an ENDO deemed me T2 and sent me home on Actoplusmet.

I had to ask my PCP 3 times for C-peptide and GADA testing. I suspect the credible and charismatic young Endo had him hornswoggled. Five months later, Monday, I got my results. GADA > 30, C-peptide 1.3 (and probably on its way down).

Now I will not have to deal with the paranoia of being told my meds are not working b/c I am a noncompliant, before finally getting diagnosis after my beta-cells are gone.

Stella Louise said...

I was diagnosed with LADA over three years ago. It was a shock to me--and my friends--given that I'm a pretty healthy, active, slender person.

I think the biggest issue is not doctors reluctance to entertain or diagnose LADA--but that we even need the designation.

LADA or 1.5 is type 1 diabetes that occurs in adults who are generally older than usually found. Type 1 has been referred to as "juvenile diabetes" for so long it seems such an aberration when an adult presents with high glucose levels, hbA1c, etc.

The endocrinologist who diagnosed me (after referral from my GP due to stunningly high glucose levels) sent me for a C-peptide test which confirmed my pancreas wasn't producing insulin. Insulin deficiency = type 1.

I think doctors and the public need to realize that an advanced age doesn't necessarily mean type 2 rather than type 1. Type 2 is insulin resistance, type 1 insulin deficient. There's no need to come up with an interim designation for those who can't wrap their heads around the fact that type 1 can occur in those of us who are most definitely no longer "juvenile."

Jenny said...


The genetics and pattern of onset suggest that LADA is not the same disorder as Type 1 diabetes. It is similar, but the genetic profile does overlap with Type 2.

But most of what doctors think they know about Type 2 diabetes is wrong too. MOST people with Type 2 diabetes are also insulin deficient, not just insulin resistant, and they too have underlying genetic flaws causing this.

Pitting Type 1s against T2s isn't the answer, but sadly, I see that pattern a lot, with people distinguishing between people "to blame for their diabetes" and "Innocent victims."

The data does not support that view. Lots of different genetic profiles lead to beta cells failing to do their job. They fail very fast (classic Type 1), at a moderate page (LADA) or within a 20 year period (Some classic Type 2s).

Better to learn how to get them working again for all of us!

MP said...

Two years after my diagnosis, the NP in the endo office prescribed the GAD 65 Ab & c peptide test the first time I saw him. My endocrinologist didn't figure it out- the nurse did! For the last year I have had to explain Type 1.5 to every other doctor I see. I have been reluctant to go on insulin and they watch my c-peptide every 3 months. What is the time frame for other LADA patients to go on insulin?
This is a great blog. Thanks Jenny.

Jenny said...


One study I read said the average time for LADA to become insulin dependent was 4 years. That is an average, though, so you can assume some take longer some less.

Endos who received their medical training more than a decade ago and haven't bothered to keep up--there is no requirement that they do that--can be shockingly ignorant. People email me horror stories all the time and I've had an adventure or two of that sort myself.

Krista said...

Jenny, I know how you feel about Januvia but am wondering what your thoughts on Byetta are given that it also affects the incretin hormone system, albeit differently. Thanks!

Jenny said...

It isn't the incretins that are the problem with Januvia. It is that Januvia raises incretin levels by turning off a protease, DPP-4. DPP-4 also functions in other contexts as a tumor-suppressor. So when you turn it off to allow incretin levels to rise, you also allow tumors to grow.

Byetta has nothing to do with DPP-4. It is simply a GLP-1 analogue which is designed to resist being chopped up. So it should not be having any impact on tumor fighting.

The fears that it causes pancreatitis appear to have been defused with further research. So it is looking a LOT safer.

Trinkwasser said...

I've read from more than one source that Type 1 in adults is around twice as common as childhood onset. One could wish more medical professionals were aware of this.

In parts of the UK the rate of *increase* of Type 1 is actually higher than the rate of increase of Type 2 (the latter is obviously still much more common) so far I haven't read a credible explanation for this.

Anonymous said...

The increase in autoimmune disease occurrence could be explained by increasing incidence of vitamin D deficiency.

Jenny said...

I don't buy that Vitamin D deficiency is causing the autoimmune epidemic. There is some evidence that Vitamin D levels drop when people have inflammatory conditions, rather than causing the inflammatory conditions.

And what little research there is on Vitamin D supplementation finds no ability to reverse diabetes.

I think Vitamin D is just one of a long list of miracle cures that will be popular for a while before being discredited. Vitamin D has shown some small effect in countering melanoma, but I have yet to see any evidence that it can prevent other diseases.

Liz H. said...

I just recently read a study that indicated that low vitamin D levels are CAUSED by autoimmune diseases AND that vitamin D supplementation can WORSEN autoimmune disease! I have multiple autoimmune diseases, including Lupus and LADA, and I have a non-dectectable vitamin D level in my blood. I don't know what we're supposed to do in such a situation-Jenny, do you (or anybody) know any more details about this study?

Jenny said...

Liz H,

The study you are citing is the product of a highly controversial person (i.e. quack) with a very checkered history and no serious research credential. Google him and you will find the details. He seems to be using this issue to give himself more visibility.

There is not enough research right now to draw firm conclusions. Dr. Davis claims that high levels of Vitamin D reduce plaque in his patients. There is a strong relationship between how much sun exposure people get and the likelihood of their developing MS--the more sun, (and Vitamin D) the less MS.

Supplementing with Vitamin D after diabetes has developed does not appear to lower blood sugar, at least not in the short term. There is no research yet about the impact of long term supplementation.

I have been supplementing with Vitamin D3 for several years now and it seems to help. I have been fighting off colds very successfully and it improves my mood. My blood sugar is still diabetic, but that isn't caused by immune issues, so it is to be expected.

marie said...

Would having LADA make it hard to lose weight. I eat very clean and work out 3 times per week, yet my weight is not going down.

Jenny said...

LADA is pretty independent of weight. I know fat people with LADA and rail thin ones.

Veronica said...

I'm a 29 year old woman from Norway, and just came across your blog.
I've been strugling with my boodsugar the last 6 months; can't get it down... I've also had gestational diabetes in my two former pregnancy's.

I've been to my doctor for an OGTT late this summer, and the 2h result was 11,0 mmol/L.
My doc didn't think this result was realistic, since I am normal weight and have normal cholesterol. So it didn't fit in..
I insisted on a c-peptid and a test for antibodies.
On the day I was going to take the bloodsample I totally forgot that I should be fastening... So I drank a coffe with a good amount of milk before I went to work. I work at the laboratory at my hospital, so I was going to take the bloodsample there... When I got to work, I startet eating my breakfast... 5 or 10 minutes after starting eating I remembered the bloodsample. Got a colleague to hurry order my tests and to take my blood.
So... I wasn't fastning.
My question is... How fast do the c-peptide levels elevate? My c-peptide was 0,7, anti-GAD was 11 iE (negative under 5 at my hospital).
My HbA1c is ok, under 6%
And fastening blood sample usually is somewhere between 5,5 and 6,5 mmol/L.

Could my c-peptide be realistic? And the anti-GAD nothing to worry about? Or could this be an early stage of LADA...)

My doctor has sent my case to an endo-doctor, so I'm waiting to get an appointment from there. But it could take time before I get in. February at the latest...
So in the meanwhie; I worry a lot, think about it everyday, and looking for answers on my own... :-/

Jenny said...

C-peptide should start rising immediately after you eat carbohydrates. Milk in your coffee would start it out, and then breakfast would help it rise more.
But the C-peptide test is so inaccurate that it isn't all that informative.

Wait until you see the Endo and find out what he has to say about the GAD antibody test. It may point to early LADA, but since you have had 2 pregnancies with gestational diabetes at a normal weight chances are that you have had something going on with your blood sugar for a long time, so it might be something else, too.

Whatever it turns out to be, it can be controlled and you can have a normal, healthy, long life. Treatment for autoimmune diabetes has advanced a great deal just over the past decade and the pumps they have now give people with LADA and the other causes of abnormal blood sugar in normal weight people extremely good control.

hurricaneangela said...

Angela is my name. When my father was declared a diabetic, his blood sugar was 428. It was November 16, 1992. During those days the type of diabetes which existed was either Type 1 or Type 2. My father was born near Fargo ND February 16, 1944 and would be 48 years/nine months old when diagnosed. He was diagnosed with Type 2 Diabetes, although he developed diabetic ketoacidosis half a dozen times in his diabetic life. You said real Type 2 diabetics will not get DKA, though they CAN get something just as dangerous: hyperosmolar high blood sugar. I didn't even know LADA existed before August 2008; furthermore, at last I know I ain't alone in my battle with having Diabetes.

hurricaneangela said...

Angela here: Me and Samantha are hoping that our LADA issues will be better and far different than in the early times. The problem is not many physicians know that LADA exists, although fortunately at the University of Iowa Hospitals and Clinics, our doctors DID know about Latent Autoimmune Diabetes. You established that overweight people, like me and Samantha, are usually denied insulin because of their supposed Type 2 Diabetes, which is flat out wrong. Sammie and I will study LADA and what it really means for those who are diagnosed with it. American Diabetes Association is not being in step with people about Latent Autoimmune Diabetes of Adults by calling it a division of Type 1 Diabetes, which it's not. It's really Type 1.5 {type one and a half) Diabetes, and Samantha and I will represent an organization about LADA Diabetes which helps people with LADA manage rather than look for cures. This organization is dedicated to people with LADA REGARDLESS of weight! What is your insight, Jenny?

Kathy said...

I was initially diagnosed with diabetes type 2 at the age 43. I had already been diagnosed at 14 with Graves disease, at 26 food allergies, and at 26 Rheumatoid Arthritis. A total of 17 years on prednisone, plaquenil, and various biologics. He says my is from genetics (parent, grandparents) and the prednisone. My question is should the endo have ran a GAD antibody test? Should I ask for one?

Jenny said...


A LADA diagnosius would get you referred to an endocrinologist and not jave you wasting money on expensive and dangerous pills that don't work for LADA. So testing would be a very good idea. Your autoimmune history makes it a strong possibility.

If your doctor isn't supportive, you probably need to see an endocrinologist first.