Yesterday I went to see my endo, and he retyped me. Adult onset type 1. I have been on insulin from the beginning, but I don’t need to go to the pump yet. I was wondering if this has happened to any of you?

I had the same experience. went for almost a year taking t2 meds with no help. when i finally went to an endo, i took my first shot in his office. my pancreas still works some so have not had any real bad highs. am taking 22 units of lantis and 16units of novolog each day. diagnosed with t1 close to my 65 birthday. Have also wondering if any others out there.


Yep! You are most definitely not alone, Jody. I am among the hundreds of members in TuDiabetes who, like you, have LADA (Latent Autoimmune Diabetes in Adults) or type 1.5 diabetes.

You can find many useful resources about LADA on this page:

Take care… and congratulations on knowing that you have LADA. Many people go on for a very long time w/o knowing, which means they cannot manage their numbers b/c their treatment is meant for a different condition!

Here too is an article I wrote about LADA for dLife not too long ago:
and a couple of other recent articles on the topic:

Take care!

Diagnosed Adult onset Type-1 3 weeks ago. I have type-1 all over both sides of the family.Still adjusting to my new life

Unfortunately, many doctors suffer from a cognitive defect. They rush to diagnosis. If 80-90% of the people who come through their door with high blood sugars are T2, then “everybody” must be T2. Then, when the patient does not respond to medication, has continuing high blood sugars, does not display insulin resistance, the doctor conveniently ignores or discounts the evidence. The idea that a doctor can so blatantly mislead themselves about evidence that contradicts their diagnosis is somewhat shocking, but it happens all the time. Many doctors suffer from this cognitive defect.

I am becoming convinced that the only way to get a proper diagnosis is to switch doctors, each time telling the new doctor that your previous doctor had it “wrong.”

“Then, when the patient does not respond to medication, has continuing high blood sugars, does not display insulin resistance, the doctor conveniently ignores or discounts the evidence.”

I also think ontop of the ignoring the evidence, doctors put blame on the patients that they must not be doing whatever they are supposed to do. I found that out when I developed gastroparesis and my BS started bouncing all over the place. The doctors knew I had gastroparesis and what that did, yet they did not offer any help as to what I should do. The only thing I heard was that I must not be doing what I am supposed to do. The one time when a doctor was criticizing my BS, I even said, “tell me what to do and I will do it” and I was met with blank stares. When I had my pump training this summer and talked to the trainer about my experience with medical people, the trainer said that it is easier to blame the patient as being non-compliant than to try and figure out how to solve the problem.

And you are right about switching doctors to get the right diagnosis. I did it several times with thyroid problems this last year and if I have a problem in the future, will do it again if I have to.

You are very lucky, Jody. Many of us had to figure this out for ourselves after being falsely diagnosed Type 2. I was one of them, diagnosed at age 58. (Of course I must be type 2, I’m in the right age group :::heavy sarcasm:::). I was ok on oral meds for a bit over a year when my numbers started to climb. My doctors tried a bunch of other oral meds and finally a too-high dose of insulin before I finally figured it out myself and got on track with treatment as a type 1 LADA. Hopefully your case will be more and more common as doctors get it…one can dream anyway!

Hi Jody: I was “retyped” 15 years ago, and sadly misdiagnosis was a very common problem then and continues to be a problem today (many people figure out they were misdiagnosed by coming here to TuD and asking questions). I was only misdiagnosed for one week, but I was the one who raised the issue with my endo and the one who insisted I receive a correct diagnosis and correct treatment. I have written several blogs about misdiagnosis, including “Bill of Rights for People with Adult-Onset Type 1 Diabetes: A Manifesto for the Misdiagnosed” and “A Field Guide to Identifying the Misdiagnosed Type 1 Diabetic.”

In my next blog I am going to tackle the issue that BSC and Kelly WPA raise, which bsc calls “cognitive defect,” and which I call “doctors behaving irrationally.” When the consequences of misdiagnosis are so severe and radical (rapid onset of complications and even death), why do doctors cling to misdiagnosis as Type 2 when there is all evidence to the contrary?

It amazes as big a problem as diabetes is that that basic tests to determine what type of diabetic you are and what secondary issues you are dealing with are not done.

That is why Dr Bernstein is so closely followed in the diabetic community and his thoroughness with his patients.

Jody, sounds like you have a very good Endo. At least he got you onto insulin and followed up.

The gold standard for differentiating between Type 1 and Type 2 is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies). If the person is antibody-positive, he/she has Type 1 autoimmune diabetes. Antibodies are not present in Type 2 diabetes. A c-peptide test is also useful, but it’s not a definitive test.

I still wonder for sure. I was told type 1 in the emergency room and admitted for 12 days to learn how to take insulin and diet and all of the diabetes101 classes. Left there to go to a Endo. who kept giving me oral meds. I finally asked him why, I said I was taught only insulin would help me. He said that I was type 2 ( probably because of age and weight) Then I said, put me only pills then, no shots. No,no he said i need both, GRRRRR!!they didnt do anything to help me soI just stopped the pills . Then I joined a medical study for new insulin and at the end of the study I was told I was a type 2. The study was for t1 so why did they let me participate in it. He said that to be a TRUE type 1 that my body had to make less than 0.5 % of it’s own insulin and that mine was producing 0.8. How can I stand it! I switched endos and explained everything that had happened and he did a new c-peptide and said that I was t1. All I know for sure is that I have been on the pump for 10 years and on insulin for 18 years from my first day of diagnoses. I’m starting a new Dr. next month, maybe i should get his diagnoses too. Would I manage my care any differently if I was a t1.5? Can you tell me?

My family dr. diagnosed me as a type 2. I wasn’t correctly diagnosed as a type 1 until I saw an endo and he ran a GAD Antibody and that blew him out of the water. 99.2%. That’s the only way they can really distinguish.

Antibodies are also NOT present in a number of T! and LADA. antibodies are only present intermittently, when actually attacking pancreatic cells :wink:

Page 1
1-800-421-4449 snta monica, ca

©Specialty Laboratories 2001
Type I Diabetes 10/09/01 TN 1094
Antibodies in Type I
Diabetes Mellitus
Type I diabetes or insulin-dependent diabetes mellitus (IDDM) is an organ-specific autoimmune disease
which results in pancreatic islet cell destruction.
Evidence of cellular destruction includes autoantibodies to
islet cells (ICA),
antibodies to insulin (IAA)
and glutamic acid decarboxylase autoantibodies (GAD Ab).
ICA (as detected on thin frozen sections of human pancreas by indirect immunofluorescence) are present in
80% of newly diagnosed IDDM patients. ICA, GAD Ab and IAA are all helpful in screening first-degree
relatives of patients with IDDM.
C-peptide is also helpful in making the diagnosis of Type I diabetes. C-
peptide is high-normal or elevated in Type 2 diabetes and low-normal or reduced in Type I diabetes.
ICA, GAD Ab and IAA do not appear all at once, but at random, varying rates depending on the patient.
These antibodies also occur before the onset of IDDM, increasing their potential for early disease detection.
Specifically, IAA is among the first to appear during the asymptomatic period which characterizes IDDM
(lasting anywhere from years to decades), and is present in the majority of young children destined to
develop the disease.
Clinical Utility
• Diabetes Mellitus Autoantibody Panel is useful to screen for those relatives of IDDM patients who
may be at risk of developing Type I diabetes; 60-80% of first-degree relatives with both ICA and IAA
will develop IDDM within 10 years.
• Predictive value for the development of Type I diabetes in first-degree relatives increases to 100% when
the ICA is strong (>80 JDF U) and persistently positive.
• Measurement of GAD Ab is a useful adjunct to measuring ICA, as 43% of ICA-positive, first-degree
relatives also have elevated GAD Ab.
• Children less than 14 years of age can be screened for Type I diabetes using ICA, IAA and GA

wahts an endo?

whats an endochrinologist in the queens english?

A doctor who specializes in the Endocrine system and the diseases that affect it, like Diabetes, Thyroid Illness, Androgen and Pituitary problems, etc.

i just go to the the diabetic nurse or some times see a dr at northmidd hospital diabetic clinic every six months. i also get my eyes checked and my feet looked after what does your treatment consist of.?

Oh well, at least it’s better than it used to be… When I was developing Type 1 in 1956 I was looked at by a GP ho didn’t have a clue. When Mom asked him if I MIGHT have diabetes, since her grandfather and sister both had it the Dr said I couldn’t possibly have diabetes because I wasn’t an obese middle aged man. A week later I was having so much stomach pain that they finally took me to the ER.
There a surgeon looked at the symptoms and decided I had appendicitis, so he operated to remove my appendix and I went into DKA coma on the operating table. By then my parents found a new pediatrician who started me on insulin immediately, and they waited 2 days for me to wake up while trying to get enough electrolytes back in my bloodstream to make it possible.
For the long version look at:
So yes, switching doctors at times IS the best answer!

Kelley, when I was diagnosed (after loosing almost 100lbs in 8 months and scared to death and feeling like hell) my family doctor put me on pills even though my a1c came back at 19.75. I went an additional two months before he would even refer me to an Endo. Then once he finally gave up on the pills to control my glucose levels and referred me to an Endo, it was two months out before I could even be seen by the Endo (there are only 4 in my entire city in North East Indiana) my family Dr refused to write me a prescription for insulin because he was unsure how to tell me to use it. My solution: I bought humulin without a prescription at the pharmacy counter and some syringes and with the help of my step-father (a type 2 on insulin) I figured out a rudamentary sliding scale and began regulating myself.

When my family Dr found out what I had done, he was furious with me and dropped me as a patient. Such professional conduct. Apparently it would have been better to die while waiting for an Endo. How dare I assault a Doctors ego in an effort to save my life.

I have found an Endo that I respect even if I dont always agree with. I currently have no family Dr. The last five years of my life have been a hellish roller coaster. I am on a pump now and it’s the most stable I’ve ever been.

BOTTOM LINE: Doctors write prescriptions and advise us but we are at least equally responsible for our own well being. Do your own research and be prepared to discuss and stand your ground. If you doctor refuses to listen or even consider your concerns you have a responsibility to yourself to rectify that situation. We are only victims when we allow ourselves to be!

Retyping? Yes! I was told (because of my age) I was type 2. I could not get my blood sugars anywhere near what they wanted me to and when I did get appointments with the DC I was told that I could do better. Mmmm. Not very helpful. How about telling me how? I struggled along for many months on Gliclazide but still got shocking highs. Eventually I went down with a chest infection and got ketoacidosis. It was only when I came to in hospital that they said that I should have known that I was Type 1!!! Er, I thought I was supposed to trust doctors! After a few days of insulin I was feeling better! But too much better! I ended up with 5, 6,7 hypos a day because of an over sensitivity to “human insulin”.