I was diagnosed some years ago with T2 and no practitioner has ever even mentioned the existence of LADA, much less checked for it. So my question is . . . how do you distinguish between the two? Is there a specific test I should be requesting in order to determine whether my diagnosis was wrong to begin with?
This is a particularly timely issue for me because I am about to start using insulin. I have concluded that I'll never achieve normal blood sugars any other way, simply based on my empirical data (of which I have a lot). That picture might make considerably more sense if it has really been LADA all along.
Hi David - I see you were diagnosed in 1995 - it is no surprise that nobody ever questioned your diagnosis, because nobody did back then - they barely do now! Can I ask what makes you think you might be LADA (Type 1)?
IMHO, it is highly unlikely you are Type 1. The typical length of time for LADA's to manage without insulin is anywhere from a few months to about 4 years; some people have gone a bit longer, but a 17-year onset of type 1 (needing insulin) seems very unlikely. It is however, a typical period of time before Type 2's go on to need insulin.
I can definitely empathize with that. It was frustrating being diagnosed as type 2 only to watch my blood sugar #'s go up and up no matter what I did or how "good" I was. I am not as knowledgeable since I was just diagnosed, but the way I found out I was LADA was by going to an Endocrinologist with experience in knowing what to test for. My initial type 1 test was negative (which was crushing for me), but the Endos knew to test for other types of tests that determined I was type 1. In the end nothing much in my life has changed except knowing I'll be on insulin the rest of my life. I am still diligent about eating low carb and getting in plenty of activity. If you are really type 2 I don't think there is anything wrong though with starting insulin. It's whatever keeps your #'s in check and keeps you healthy.
Hi David: I agree with Zoe, usually a person with slow-onset Type 1/LADA cannot go for 17 years without insulin. That said, the tests to determine Type 1a diabetes are the full suite of antibody testing (GADA, ICA, IA-2, zinc transporter) and the c-peptide test is also useful but not definitive. If a person with diabetes is positive for one or more antibodies, the person has Type 1 autoimmune diabetes. Then, there is the possibility of monogenic diabetes aka MODY. I have written a blog about the misdiagnosis of insulin-deficient diabetes; maybe you can read it and see if you relate? Finally, going on insulin is a good thing--it is important to do what it takes to achieve good control. Best of luck!
Thanks very much. Your blog helped clarify the picture significantly. I think you're right, this probably isn't LADA:
(1) 17 years with control gradually worsening, but very very slowly, (2) No visible complications,
(3) Not scandinavian,
(4) Overweight (though not obese) for many years (not now, thankfully), and
(5) Still responsive to diet and exercise, A1c usually in the sixes.
As I said, I'm just trying to eliminate possibilities here; that's just as diagnostically important as identifying positives.
Hi David: I do think the c-peptide test would provide you with some excellent information, specifically how much insulin are you making? If you are deficient, that boosts your decision to go on exogenous insulin. And yes, the process of elimination is quite useful. Good for you for being so proactive about your health care!
In addition to GAD65 antibodies, and low C-Peptide, I brought my Endo genetic testing for Celiac disease. I do not have Celiac disease, but have the genes that are common to both Celiac and LADA or Type 1 diabetes. I don't have islet cell antibodies as of three years ago. I had a real heated debate with my Endo, but he did test me for LADA, even though he yelled that I was not. Two weeks later, the tests confirmed...I was LADA. The reason I had my genes tested for Celiac was because I am of Irish heritage, and my older kids need to be gluten free to stay well. The Irish have bad statistics for Celiac. A friend saved my health by posting about Type 1 Diabetes in a Celiac group.
Melitta is very knowledgable. You should look at her past posts.
About the 17 year thing...I am recalling the story about Dr. B's son. How many years has he been holding on? My Endo once said that if I can keep this up, I may be able to keep the pancreas alive indefinitely. I'll take whatever...
My Endo. tested me for Celiacs and Thyroid right after I had been diagnosed 1 since she said that if you have antibodies for T1 you are more likely to have antibodies for the other, and it IS interesting that these things seem to run in families. I thought it was kind of weird at the time, but I see it makes sense! I don't know why Docs balk at running extra tests. It's not it like it costs them any extra money and I surely can't think it takes that much time out either. It just boggles my mind.
Well, now at almost 59yo, I have the antibodies for Hashimoto's thyroiditis and Rheumatoid Arthritis. If you have autoimmune disease, you have to have an additional test to make sure that the test for Celiac was valid.
"For most people, the serum anti-tissue transglutaminase (tTG-IgA) is the best antibody blood test for screening for celiac disease; however, it is important to also get a total serum IgA. Having this total serum test will help bolster the reliability of the tTG test. The reason for this is that while the tTG test is very reliable, its reliability is dependent on the premise that the person being tested adequately produces IgA. If the individual does not produce sufficient amounts of IgA and is instead IgA deficient, then tTG-IgG should be tested instead."
Again, it is possible to have the genetics, but not the disease, as I do. I am gluten free, anyway, just because I follow Dr. Berstein and don't do readily available carbs. I only use flax meal and almond meal.
Although some doctors are getting better at recognizing patients with LADA, many of us were diagnosed with T2. People with LADA often progress quicker onto an insulin program than a regular T2 and often have another associated autoimmune complaint. In order to find out if you have LADA you would need to have a GAD antibody test and a c-peptide test. These can be tested when you have to have a blood test. Some doctors resist giving these tests as mine did, but if you persist or ask to get a new doctor then you can find out.
There is a lot of material on this site about LADA and the people here are very good at helping with any questions you might have about LADA.
Thanks for the quick response. I don't have a compelling reason to assume that I might be LADA, other than having read a great many posts by people who thought they were T2 but weren't.
You make a very strong point about the length of time. And I don't actually "need" insulin; not, that is, according to conventional medical wisdom. But as I mentioned in the original post, it has become absolutely clear that it is not possible for me to achieve normal BG any other way. (I am a Bernstein follower, in case that's not obvious.)
Back on the subject of insulin, I had to talk my Doctor into it. Fortunately he is open minded enough to go along. (He actually said to me, "Every individual is different, and I don't know everything." When was the last time you heard a doctor admit that?)
I'm just trying to eliminate possibilities here. And actually, at the end of the day, the essential thing isn't whether I am LADA or T2 -- if I can develop a regime that gets me where I want to be. It's the end result that matters.
I'll just add, as a personal and highly subjective postscript, that insulin has given me a degree of control far beyond anything I was able to achieve before, diet and exercise notwithstanding. I wish I had done this years ago.
I am pretty sure I am LADA but my Dr strongly disagree with me. I was diagnosed at age 19 as T2 and started with diet and excersise which did not work then I was moved onto Glucophage and maxed out on that then added Glyburide and still had sugars in the 300-500 ranges. I even excersised and hardly ate any carbs. I went on like this until I got pregnant with my daughter when I was 25. I was put on Insulin for the very first time and within a week got excellant blood sugar control. Through the whole time before Insulin my A1C was 10 or more, I even got up to 12.5%. It was always blamed on me not being active enough or not be honest about my diet blah blah! Back then I didn't even question my diagnosis I just went with it and accepted the fact I could not control my Blood Sugar, I never even considered Insulin because I was not a T1. Anyway when I was 27 my Dr. introduced the idea of an Insulin pump, so I said sure why not. Well in order to get one she had to do a c-Peptide on me, it came back that I made no Insulin so I could get on the pump. Again never questioned having any other tests. I have had C-Peptides drawn three more times since most recent was in August this year and ding ding ding I still do not make insulin lol! I knew that but had to have it for insurance to get on the pump. Anyway I finally started questioning my type and thinking maybe I am indeed type 1. So I asked for more testing so she did GAD antibody test but it came back neg, so she will not change my diagnosis. My thing is it isn't like I had awesome control that fadded over time, I had horrible control till insulin was added and now I do not make any? I know I didn't make any 8 years into my diagnosis but just when did I stop making Insuiln all together and why so early if I am type 2? She has also told me I have a Hashimoto thyroid because it is small and firm and while I do not have thyroid issues now I will most likely have them in the future. I don't believe I am so resistant to insulin either as it does not take much to drop my sugar and I can take 4-6 units for a meal and not have much rise(depending on what I eat but that is everyone). Ahh it is frustrating. I only want to know because it changes the amounts of insulin I would take or how I would be treated in the hospital etc. I wonder if anyone else has got a neg GAD antibody and actually been type 1? The PA in my dr office said that the antibodies can disapear or go undetected if it has been a while since the attack. When I first went on insulin my average daily Blood Sugar was in the high 300's and that was with hardly eating. Plus my blood sugar would mysteriously go up without eating anything, which I now know was probably because of low levels of basal insulin. Anway that is my story, my frustration...At least now I am on the pump and sensor so we will get the big picture of what is going on.
The GAD-65 is one of the definitive tests for Type 1 though my original endo chose to ignore the fact that mine was positive and declare me Type 2. I am skinny, fit, no family history of diabetes which made me question this diagnosis and seek out further information. I basically diagnosed myself and found a new endo who gave me the right diagnosis. Well worth the 6 months wait for an appointment as my old endo was trying to treat me with Type 2 drugs which is a no-no for Type 1's. I would suggest that if you have reason to believe you are being misdiagnosed that you do some research and find a different endo.
