Hi all, first post here. Diagnosed LADA/T1D a few months ago. Since then I have been extensively poring over medical papers, Reddit, Youtube because the diagnosis blindsided me and I knew almost nothing about this disease.
I soon heard of the cases of Daniel Darkes (UK man diagnosed at 23, off insulin at 30) and Johan Kotze (UK man diagnosed in his 50s off insulin after 7 years, without insulin 3 years)
The two stories have factors in common: Adult onset, quick progression to severe condition (hospitalization) after first symptoms appeared, heavy physical training including running, 7 years until reversal.
Although I, like many others, find Darkes’ story questionable - esp since he has not published his book about his recovery, even after years of it being supposedly forthcoming - And I even have some skepticism about Kotze’s situation as well, that another has experienced a similar freedom from needing insulin gives me some hope.
there are three factors that control your blood sugar - diet, exercise, medication. If you do great on 2 of the three, you can limp along w/o the third. That doesn’t mean you have reversed the disease.
Reading the following article I suspect that Johan Kotze is misdiagnosed type 2 or 3c. There is no mention of antibodies being present. If he suffered from an attack of pancreatitis that could account for a low C-Peptide level. In some cases the pancreas heals restoring full function.
In any case there is not enough information to conclude that either man spontaneously regained Beta function after an autoimmune attack.
With both men, I agree there are key details like autoantibody results which would help us understand their cases better. And I can understand that people with type 1 will be skeptical about a reversal or cure, considering so many are active, and do eat healthily, and do not similarly come off insulin or show any signs of “reversal”.
I live in Canada and was diagnosed Type 1 (likely LADA) after coming in to emergency for weight loss and turned out my glucose was off the charts. I was diagnosed without an autoantibody test myself, the doc judged from my response to an insulin drip, and later my C-peptide results: I was very insulin sensitive and producing below the normal range of my own insulin. The endocrinologist I saw later reasoned the test (in Canada at least) only tests for one antibody, GAD, not enough to differentiate T1 from LADA and they’re both treated the same besides. It was shocking to me to learn only research setting tests look at the 8 or so associated antibodies, that patient tests only look at GAD.
All this to say, it’s not as nice as having the info, but its lack (in light of my own exp) doesn’t immediately flag its absence as suspect.
I do wonder if we may hear of more cases such as theirs.
Without all antibodies tested, I don’t believe either one. Also, my endocrinologist says LADA is Type 1. I was diagnosed with Type 1 at 49, my brother at 11, and my daughter at 24.
i just recently got my autoantibody results (following a low c peptide we did the rest, i was + for gad, ia2, and insulin autoantibodies, my dx was last year at age 37: i also saw a very rapid progression from onset to full insulin dependence.) upon getting those results i started trying to read more about the details of it, like what it might mean (including i read most autoimmune adults/“t1.5” have just gad…?), and tbh i mostly found there’s sort of a lack of consensus around both specific diagnostic criteria as well as how to “number” or where to “file” adult onset autoimmune cases among the types. it also seems there is some debate regarding if the autoantibody specifics indicate different subtypes or not. ultimately the only thing everyone seemed to agree (in my reading) was that insulin was ultimately necessary for such patients. the definitions and criteria don’t seem to be well defined, which i assumed was attributable to LADA being a kind of newly understood phenomenon…? does anyone here know more about the finer points of autoantibodies and adult onset? i looked but could not find anything, i don’t know if i didn’t find it or if the info i want about autoantibodies in newly dx adults isn’t really out there
Most autoimmune adults have all 3 antibodies. Some Type 2’s can have GAD. I was diagnosed at 49 and inappropriately treated as a Type 2 by my Internist for a couple of years. He tried every kind of oral drug on me and because they didn’t do a thing, he thought I wasn’t trying hard enough. I was the one who asked for insulin. Anyway, I don’t call myself a LADA, and neither does my endocrinologist. I am a Type 1. While participating in a study, I met 2 men who were diagnosed Type 1 in their 60’s. Many people are diagnosed in their 20’s and 30’s. I am now 78 and have had a pump for 17 years and a CGM for one year.
that it varies a lot. if you get into this one it says:
“Most patients with LADA are positive for a single islet autoantibody, and glutamic acid decarboxylase antibody (GADA) is the most predominant. Some population groups have a varying prevalence of different autoantibodies, and measuring just one may underestimate the prevalence of LADA. Autoantibodies have been observed to appear and disappear during longitudinal follow-up. In these situations, the role of assay interference from anti-idiotype antibodies should be considered.”
so that’s where i got that notion from, i understood that phrasing to mean a lot of people have one only with an adult dx (i may have misunderstood though i am not a doctor!). broadly again there seems to be a lack of consistency across the profession on the matter ended up being my takeaway, since i saw a lot of reputable sources that seemed to somewhat contradict each other.
i suppose ultimately it’s an academic concern for me anyway, now i know i will be insulin dependent for life and i have the right treatment options available to me. i was just curious because i like to know stuff
Welcome to FUD @ninako, I hope we have much to offer each-other. We are a group of people who enjoy talking about all facets of diabetes and finding real world solutions to difficult management challenges. Doesn’t matter the type. We also have a bunch of scientists here as well so the conversation tends to be wide ranging. Looking forward to learning more about you as time goes by.
I was 49 with all three antibodies, like you. Having no success as an assumed Type 2, I finally convinced my Internist to refer me to an endocrinologist. He did an hour interview and told me I wasn’t type 2, I was type I. I asked if he was going to do an antibody test and he said yes, but he didn’t have to (later did one). He said I was very insulin sensitive, there was no type 2 in my family, and type 2 meds did not affect me. I later asked him if I was LADA, and he said he didn’t use that term. You were either an autoimmune (with antibodies), insulin sensitive Type 1 or you were a non-autoimmune, insulin resistant Type 2 with Metabolic Syndrome.
It is my opinion (and only my opinion) that you can simply identify as a person with Type 1 diabetes. Age of onset is on a Bell Curve, with most people in their 20’s. It’s a bit hard to accept this because it used to be called Juvenile Diabetes. My brother was 11 and my daughter was 24.
i went one step simpler than that even! i just put “DIABETES: ON INSULIN” on my medical ID. after all, for most day to day purposes, that’s basically the relevant bits in a nutshell and the rest is to some extent academic. like i said i find it intriguing intellectually, but for practical purposes i’m probably better off perfecting my finger stick technique
i too am very insulin sensitive, no family history of t1 or t2, etc. i was lucky to see a lada headline go by in the news actually shortly after my diagnosis, and it got me thinking because it sounded closer to me than t2. i then made an increasing nuisance of myself until i got a provider who would do the testing. so i fortunately got to a suitable treatment plan fairly quickly and didn’t spend too long mired in misdiagnosis purgatory.
I was going to add that there is one significant difference between late onset and early onset. Late onset, or LADA, if you will, generally has a slow process, whereas many children have a rapid destruction of their beta cells and are diagnosed in the emergency room in DKA. That was the case with my brother. But you had a relatively rapid onset, which is not typical of the older age group.
Many type 2’s have some GAD, but they won’t have the others. It’s lucky you heard about LADA and pursued a different diagnosis from Type 2. Good for you. But forget the LADA. You’re an insulin-dependent Type 1 with a typical age of onset.
I highly recommend you consider an insulin pump and a Dexcom CGM. At least get the CGM right away. You will always know your blood sugar and won’t have to poke your finger several times a day. It will also alarm you in the night if you go high, or especially if you go low.
Yes, that’s my understanding and my experience too. I was diagnosed Jan 23 and am still not on insulin. At diagnosis my A1c was 14, bg 580, positive for only GAD. I was prescribed insulin at the hospital but wanted to wait until my first endo appt to begin taking it. I began finger sticking, eating a low-moderate carb diet and increased exercise. By the time of the endo appt my A1c was down to 8.5. I decided to keep doing what I was doing knowing that things can change rapidly. Last 2 A1c were 5.8. I wear a G6 and take Januvia 1x daily. Lately, I am seeing more bg volatility and higher numbers for a week or so and then back down. I am a diabetic but I don’t hear my story very often.
There are some schools of thought that it’s better to start insulin a little early and baby the pancreas along. Injecting insulin is nothing to worry about. It’s not at all like a flu shot. It’s a super fine and very short needle that you hardly feel.
@Moonbeam: yes, i was an ER diagnosis. i came in peeing literally every fifteen minutes, with BG around 400, a1c 14.5, and badly underweight (i started at a low normal bmi and had abruptly lost 25 pounds in ~3 weeks for no reason i could tell and i felt like ). the ER team even commented because 5u of insulin dropped me from over 400 to 163 in an hour; that was something i remembered later when my regular provider went the t2 and metformin route. in hindsight the obvious symptoms had been increasing in severity for a couple weeks, and subtler clues had probably been present for a few months? but to quote my ER team at diagnosis i was “hanging off the edge of the dka cliff by [my] fingernails” and if i had “waited even a couple more hours, would have come in by ambulance and be headed to the icu by now”. i got very lucky to say the least, especially since i drove myself to the ER, alone, through a storm on a snowy icy two lane highway in the dark in that state don’t think too hard about that, YIKES.
i was insulin dependent from the night of diagnosis: trying metformin almost sent me back to the hospital. your explanation clarifies some of these things i had wondered! specifically that i noticed i had a lot of things (the autoantibodies, speed of progression…) more often described for “classic” t1 than much of what i was reading for lada. in particular it really did seem like i sort of went from no known diabetes to insulin dependent diabetes in just a shake of a lamb’s tail. it’s mostly a curiosity thing to know, but what can i say, i’m a curious kitten! lots to learn about all these distinctions, it’s easy to get lost in all the material out there. thank you for that explanation/clarity!
My gosh! What a scary time you had. I can’t believe they ever thought you were Type 2 and gave you Metformin. They gave it to me before my true diagnosis, in every format and dose, and it made me so sick. It’s bad that doctors assume anyone older than teenage is Type 2. I have read that fully 20% of Type 2’s are misdiagnosed Type 1’s. And rapid weight loss is not a Type 2 presentation. There can be overweight Type 1’s, but there are not slim Type 2’s. Overweight is part of the Metabolic Syndrome that accompanies Type 2. You are smart and brave to push through for a correct diagnosis. (And from everything you’ve said, you are not LADA.)
I read that too. And I also read that early insulin did not prolong beta cell health. So, given that it was an option, I decided to wait and see - and I’m still in that space. Those who know me are not surprised by my decision and I recognize how unusual it is to even have a choice with this disease. That said, my endo is treating me in accordance with the guidance for LADA, which uses cpeptide measures to help determine when to start insulin.
Thank you for your reassurance about starting insulin. I admit I am a bit afraid - not the needles - but the lifestyle change. That’s why I try to stay involved in the forum here and up to date on diabetes research. Even though I don’t see my story, it is really helpful to me to read about people managing diabetes with insulin and makes me less fearful.
That’s all good to know. Sounds like you have a good doctor. The pumps and other insulin delivery systems are so awesome that you totally don’t have to worry when the time comes. It will actually feel pretty empowering. Best wishes.
My cousin-in-law is a slim, wiry type 2. That’s not the stereotypical bodytype, but it happens. Age at diagnosis and BMI at diagnosis are not reliable distinctions between type 1 and type 2.
so i fortunately got to a suitable treatment plan fairly quickly and didn’t spend too long mired in misdiagnosis purgatory. 
