I’ve been curious about something for a while, figured I’d finally ask.
My personal experience in being diagnosed as T1 spanned a time frame of about 10 years.
Initially I was labeled T2 and spent multiple years “managing” my BG with controlled diet and exercise.
During this time period I rarely checked my BG and saw the dr. a couple times a year where my A1C levels slowly crept up. Eventually (after about 8 years) it rose to a point where we decided it was time to start on meds.
Ove the next ~1.5 years I tried several of the standard T2 options (Metformin, Onglyza, and one other I can’t remember) and finally tried Victoza. After finding none of these options worked at all or for very long I was tested for the indicators of T1. I was negative for GAD antibodies but positive for Insulin antibodies.
So, now I’m on a pump but my daily insulin usage is very low (avg of 23 units with a daily carb intake of ~300 mg).
In other words my carb ratio varies from ~15:1 to ~12:1 depending on the time of day.
All that to lead up to the question of “How many LADA people here share an experience similar to mine?”
Edit: Forgot to mention I was 35 when initially diagnosed as T2 and am now 51.
Hi Wheelman: I was also diagnosed at age 35, but only spent one week misdiagnosed as a Type 2, before getting the correct diagnosis of Type 1. I was hospitalized in DKA, so had a rapid onset. I also have a low TDD (total daily dose) of ~20 units via my Animas pump.
Your story is very common! I think most people with slowly progressive Type 1 diabetes require insulin a bit earlier than you did, but I actually know someone who went 30 years before requiring insulin (and yes, she was autoantibody positive). She does wish she had gone on insulin sooner, but yikes, 30 years!
We are all different. I have not been diagnosed as LADA, but T2 doesn’t fit. I tested negative for GAD antibodies and have never been tested for any others.
It has now been 8 years, and I use a pretty low dose of insulin except when pregnant when I needed astronomical doses. I am now 45.
I do think though that if I hadn’t gotten pregnant (in fact I was diagnosed in the first weeks of my first pregnancy) and been put on insulin immediately (which I have continued ever since, because it works, and I like having excellent control), I would not have been diagnosed until very much later…
I do eat very low carb most of the time, and also use intermittent fasting as a management tool. Currently my TDD is about 15 units /day (if eating low carb) - probably double that if I ate significant carbs. Sometimes I wonder if I am really diabetic… but mostly I just count my blessings that this is relatively easy to manage.
Actually the presentation of T1 and T2 can often be exactly the same. T2 is a diagnosis of “diabetes of unknown cause.” There are others like you who don’t test positive for antibodies but have been given a diagnosis of T1. But you don’t have a definitive diagnosis of T1 which means that in some sense you still do a diagnosis of “diabetes of unknown cause.” I have a diagnosis of adult onset T2, tested negative for antibodies and have a low c-peptide. My endo codes me as an “ideopathic T1” but what it really means is T2, diabetes of unknown cause. I may at some point accept her formally fully recoding me as T1 since the treatment of T2 can be seriously substandard particularly as you age. Getting a pump and CGM as a T2 is often nearly impossible.
@Brian,
You’ve hit on a very important aspect of this topic, how medical insurance looks at T1 vs T2.
My endo wouldn’t even discuss the idea of a pump when we still thought I was T2. It wasn’t because she didn’t think it was appropriate but that my insurance wouldn’t cover any of the associated costs.
As soon as I was coded as T1 I began receiving phone calls and literature from my insurance company related to a well health program they offered. It provided counseling with a nurse and info on the additional things that were now covered.
Just to state the exception that proves the rule I recently found out a long time friend has been diagnosed as T2. He used Lantus and Humalog pens for a while but recently switched to a pump and CGM, his insurance covers virtually all the costs.
I think there are a lot of people in the Diabetes Online Community with a similar story, but that it’s much less common in the general population of people with diabetes, which is why so many docs seem to miss it. I was lucky enough to get a proper diagnosis almost right away at the age of 46, but I think I’d been having BG issues for many years leading up to that. It was only a series of very acute symptoms which finally caused me to go to the clinic. When I called for the appointment and said I thought it was diabetes, they had me see a nurse practitioner who specializes in it. He took my fasting BG and it was over 200. He told me he was required by the clinic to diagnosis me as T2 until proven otherwise. Luckily, he thought I was likely to be T1/LADA and he immediately ordered a GAD antibody test. It came back positive a week later. Had I not been a thin person with another autoimmune issue (hypothyroid), I likely would have been labeled T2, sent home with only Metformin and left to fend for myself.
I was diagnosed about 3 years ago as a “type 2”. I’ll never know if my diabetes started at the same time as my symptoms started coming on, or if I might have had it for years before that. But I got blurry vision and extreme constant thirst at one point. After a few weeks of that I went to my doctor who then sent me for blood-sugar testing. My fasting sugar was 450 (25 mmol). It might have been another month or at least a few weeks that my clinicians decided to test me for ketones when I was on lunch break at the diabetes education class. They then told me that I was type 1. It was quite an unforgettable moment. The whole class turned around and gawked at me like I had just been handed a death sentence. Smart clinician though. She told me that I had more freedom than the type 2’s because I could now eat pretty much whatever I wanted because I could just match it with the insulin. I have to say, she made that shocking moment a lot more positive for me.
[quote=“Maria32, post:7, topic:52891, full:true”]
The whole class turned around and gawked at me like I had just been handed a death sentence. Smart clinician though. She told me that I had more freedom than the type 2’s because I could now eat pretty much whatever I wanted because I could just match it with the insulin. I have to say, she made that shocking moment a lot more positive for me.[/quote] @Maria,
Interesting response from your class.
I personally felt relieved when I was diagnosed as T1, for exactly the reason the clinician stated. Plus I’d felt guilty for years thinking it was my fault I had T2 diabetes.
I know now there’s nothing most people can do to prevent it but due to little I knew about T2 diabetes and the attitude of people in general I really felt I it was my fault.
It was a huge burden lifted off of me.
Of course that relief didn’t last long, I quickly realized there’s nothing I can do to “reverse” or minimize it, so it’ll be a major factor for the rest of my life.
I strongly believe that there is absolutely nothing that anyone can do to prevent any type of diabetes (Type 1, Type 2, MODY, gestational, etc.) from developing, and that there is no cure for diabetes (at least at this moment in time), regardless of type. Some (not an overwhelming percentage by any stretch of the imagination) can control their Type 2 diabetes with diet and exercise without meds, but the fact remains that they still have Type 2. Many others will have better control with the right diet and exercise but will need medication, and not because they are “failing” in their efforts to control their blood sugar with diet and exercise alone.
I know what you mean. I remember trying really hard to bring down my #'s when I was first diagnosed. I exercised until I hurt, I ate so carefully, took cinnamon supplements…They even had me on Metformin for a while, which worked a little but still couldn’t do the trick. I was quite angry that I had to go on insulin at first, and felt I had failed, but I finally realized there’s nothing more i could have done.
My experience is pretty close to yours wheelman, initial diagnosis of T2 at 38, revised to T1/LADA after pills and diet didn’t work. My insulin usage (now at 44) is a bit higher than yours but in the ballpark.
I was diagnosed at age 44 with T2. I tried for a year to keep my BG down but no matter what I ate, my BG’s stayed high. Weight and exercise were not an issue for me, I did not need to change any of those factors in my life. The Dr. after a year changed diagnosis to T1, so have been on insulin ever since. Who know’s what I am but I know nothing worked till I was placed on insulin. I figured I was lucky and had 44 years without diabetes.
My bg slowly crept up during a series of annual physicals. Fasting bg was 95 about 5 years ago and they said to be careful - I was close to pre diabetic. I ate a very healthy diet and exercised regularly already, but tried to be more careful. The next time it was 110. They did to eat more fiber. I did. Next time it was 118. About 6 months later, my allergist was running some bloodwork related to a vaccine and I asked him to throw in a fasting bg. It was 261. Fortunately, since it was not a GP, he referred me to an endo who immediately said I was most likely LADA (I am 53), so I was spared the confusion and misdiagnosis that seems so common. Antibody testing confirmed the diagnosis. I’m on MDI, take about 15 units a day and posted a 5.9 a1c at my last visit.
