This is a great discussion but I’m still confused…
I was diagnosed as a type 2 on October 23, 2007 and re-diagnosed as either a type 1 or 1.5 on October 8, 2008. I still can’t figure out which type I am, my C-Peptide was 0.5 ng/ml with the lab range being 0.8-3.1 and my Islet Antibody test result was negative. At diagnosis I was 37, 118lbs, 5’8". My A1C was 12.1% and my glucose reading was 550.
Are there further tests that I should be getting to help determine this? Sadly, I’m the one that had to request the GAD as my doctor at the time didn’t know what tests to run.
I know there is more than one type of antibody that attack the beta cells - the GAD antibody test looks for just one of them and is the most common. Your test results defnitely sure sound like a type 1 to me. I found this article very helpful in explaining the technical aspects of it:
I am fortunate to have an endocrinologist that ordered the appropriate tests before dispensing treatment. My general practitioner just assumed type 2, but he had the good sense to refer me to a specialist. For me, the GAD antibody test was a very clear positive, but that is obviously not the case for everyone.
You need all the antibodies run. Not just one. GAD65, ICA, IA-2 etc. It depends upon where your genetics are for diabetes on what may be positive. Testing just one isn’t enough.
A good endo can easily help you and do all the testing to figure it out.
K
That is true – apparently how rapidly you progress can be predicted by the number of antibody types, as well as titer, too. GADA seems ot be used for screening, more often, though.
It probably depends on the Endo and the NHS Trust. I was diagnosed recently and the GP sent me off to hospital because of my glucose and ketone levels. They were pretty certain I was type 1 just from the presentation but they did a battery of tests including testing for several antibodies to confirm it.
I think like a lot of medical matters it’s a bit of a lottery and depends on the character of the consultant in charge. The endo in Shrewsbury (where I was) seems pretty dynamic and has developed a whole centre there and a support structure in the community. On the otherhand some of Shrewsbury’s non-diabetic departments are truly dreadful…
Perhaps it was their LACK of info saved you a hassle though – MY MDs had read a paper about the increasing frequency of Type 2’s presenting with DKA – thus adding to their assumptions, about this fat > 50 woman! I kept asking and asking about that!
Lizzie
T1 and T2 are different in cause,
T1 is caused when the beta cells stop making insulin. T2 is what happens when the body stops reacting to its own insulin.T2s often maake masses of insulin, but can’t use it without help. T1 usually begins in young people and comes on fairly fast. T2 was thought to be typical of older people and comes on fairly slowly.( Often over several years.) I think what they call T1.5 is a slow developing T1 in mature adults.
Ultimately, it doesn’t matter what kind of diabetes a person has, just whether the control is working.
Hana
For 1 thing, there is NO SUCH THINK as Type 1.5. It only confuses thing since to some people it means LADA., or Latent Auto-immune Diabetes in Adults, the slowly developing variant of Type 1, OR the need of as Type 2 (usually long term) to need insulin after finally getting past what pills can help. These are absolutely different things, and the “Type 1.5” label doesn’t have any official meaning or use, AFAIK.
OK, that being said, Type 1 is an auto-immune disease, where the body attacks the pancreas’s Beta cells which look too much like various viruses that may have happened to infect someone that has poor fine tuning on the immune system detecting exactly what that virus is. This may or may not be an inherited susceptibility, though in recent years it appears to just happen for unknown reasons in many cases. Type 1’s pancreases make no insulin, or at least much too little to supply the body’s needs. Originally when it was defined in 1952 as a separate disease it was thought to affect ONLY children, but it doesn’t. That’s why the term changed from “Juvenile onset diabetes” to “Type 1 diabetes” some number of years ago, perhaps in the '60s or '70s.
Type 2 is an entirely different condition where too much strain is placed on the system, generally (though not always) from long term obesity, though in some case obesity is a result of developing Type 2. Insulin resistance builds up until the entire output of insulin the body can make just doesn’t cover needs, so excess glucose stays in the bloodstream and spills in the urine. type 2 can be treated with pills that stimulate insulin output, or Metformin that suppresses output of glycogen from the liver, but high bg levels can eventually kill off more and more Beta cells until the only answer is taking insulin. If a type 1 needs o take insulin they do NOT become a Type 1.5, they are a Type 2 requiring insulin.
The difference is defined by what has happened to cause it. Type 2s still have insulin output, so on way to tell the difference is by testing for C-Peptides. These are the part of proto-insulin that is split from the insulin when it goes to work, and they remain in the bloodstream, apparently with no direct use, so they are fairly constant. A Type 1 will have little or no C-peptide present, where a Type 22 will still have them, generally more than normal. This test can be tricky, so many prefer to use GAD antibody tests. These are present as part of what kills the Beta cells, though after some years of Type 1 they may be much harder to test for. Soon after diagnosis is the best time to test in either way.
My experience, Theodore, is that many people use Type 1.5 as interchangeable with LADA. Since both are used, I generally refer to my type as LADA/1.5. However, I agree with you that 1.5 isn’t a particularly useful designation. It leads people to think LADA is a combination of Type 1 and Type 2, and it isn’t. It’s a variation on Type 1. People with LADA CAN develop insulin resistance but then so can people with regular type 1. Whether we like the term 1.5 or not, it is used pretty regularly so it’s useful to agree on what it means.
Theodore, it seems as if there is no OFFICIAL term as recognised by many of the world-wide diabetes bodies. I’m sure that will change with time. That doesn’t mean “there’s no such thing”. The term is definitely in frequent use by medical people, including doctors, and has been defined by many research papers.
The fact that the diagnosis is so often missed is that the tests have only been around for a decade or two and many doctors don’t even think about LADA/1.5 as a possibility. I was one of those misdiagnosed for more than 30 years, however, the condition was only recognised well after I was first diagnosed.
While Type 1 (or the former Juvenile Diabetes) has many ways to diagnose it, LADA/T1.5, as far as I know, has to have positive GAD Antibodies. Slow onset and positive GAD are the two of the distinguishing factors for LADA/T1.5.
Where the T1.5 part came in, from what I’ve read is that the condition often (but not always) has “features” of both T1 and T2. Statistics say that up to 20% of T2s are actually untested/undiagnosed LADA. For many who are diagnosing, it often looks like T2 and seems obvious that it’s T2, when it isn’t.
I agree, Susi. The problem is that doctors have it in their heads that Type 1 only looks one way: Young, very sudden onset often with DKA. For those of us who were older at diagnosis and managed for awhile on oral meds because our pancreas’ were still producing enough insulin, we were just tossed in the Type 2 bag. I’m sorry you had to go so many years without correct diagnosis. I was so frustrated and puzzled when my oral meds stopped working at a little over a year into diagnosis. I had fully expected that as a Type 2 I wouldn’t need insulin for many many years to come. It took me awhile but I found the answer and felt so much relief. For you, there weren’t any answers to be found for a long time! I wonder how many LADA’s from “the day” just struggled on with high blood sugars because they believed they were Type 2’s and “should” have been able to manage with diet, exercise and oral meds?
Actually Zoe, I was offered insulin about 8 or 9 years ago but refused, thinking that as a type 2 I’d just have to do even lower carb and more exercise. Two years later, I figured it wasn’t going to work and gave in. But I did get diagnosed when I was 25 (56 now) and I went until I was about 44-ish not needing anything at all, just diet (other than when I was pregnant 20 years ago when I expected to need insulin). So, it’s a pretty long honeymoon, all things considered. I’m not at all surprised the doctors didn’t want to run the tests. It didn’t look anything like LADA. Even needing insulin after 25-ish years isn’t unheard of in T2.
All’s well that ends well, I guess. I got an insulin pump last year and that’s what I really wanted. Couldn’t be happier!
When I was first diagnosed 15 years ago, I met a LADA from “the day” at a diabetes support group and it was so tragic and stuck with me forever. He was middle-aged, thin to normal weight, and a great and avid tennis player. His doctor told him that he would be fine if he just exercised, and this guy loved his tennis, so he played a lot of tennis. When I met him, he had just had part of one foot amputated and was about to have a kidney transplant. He by that time was on insulin, but all those years of misdiagnosis led to severe complications. This gentle man actually said at the support group that if he saw the doctor that did this to him, he would kill the doctor and sleep like a baby. Now I didn’t forget that.
I would respectfully disagree with Suzi’s comment–of the LADAs I have met, there’s just no way a doctor with his/her eyes open could miss that the person with diabetes didn’t resemble a Type 2. Doctors still make the misdiagnosis strictly based on age.
Also, I just posted another blog “A Field Guide to Identifying the Misdiagnosed Type 1 Diabetic” where I take on some of these issues.
I was diagnosed at 53 & almost dead from DKA. The nurses & doctor were puzzled about what type I was given my age & slender size. I think if I had been less sick, I would have been labeled T2 because I was treated as a freak of nature.
It seems that it’s patients like us who are raising awareness. I dare say all those doctors who’ve misdiagnosed, won’t make that mistake so quickly again.
It also seems that LADA comes in all different shapes and sizes.
In 2007, age 20 years or older: 23.5 million, or 10.7 percent, of all people in this age group have diabetes in the USA.
If 20% of diagnosed T2s are actually misdiagnosed, and let’s assume some of that 23.5M go straight to T1, then that means about 3-4 million are undiagnosed LADA. Astounding when you look at those numbers, isn’t it?
More awareness is definitely needed! It’s happening but far too slowly. Time and time again I’ve heard doctors refusing the antibody tests.
