Man reverses Adult Onset T1D? - Johan Kotze

until very recently i seriously still thought it was just age that determined it :woman_shrugging:t2: i now know the concept of kid = t1 and adult = t2 is outdated, among other learning. this sure is an educational experience :sweat_smile:

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Itā€™s tricky. Almost all the adults who are diagnosed with diabetes this year will be type 2 (like 90-95%).

The tricky part is that of all the people diagnosed with type 1 diabetes this year, more than half will be adults, not children. (See, for instance, Adult-Onset Type 1 Diabetes: Current Understanding and Challenges | Diabetes Care | American Diabetes Association ). Thereā€™s more discussion of this at Adult Onset Type 1 Diabetes: Misdiagnosis of Adult-Onset Type 1 Diabetes: Root Cause Analysis , especially in footnote 1.

Thatā€™s the part that gets overlooked (or isnā€™t even known) and gets us misdiagnosed. The one benefit I see in the LADA label is that it helps diagnosing physicians to keep in mind the possibility that the new adult diabetes case they are diagnosing might be a type 1 case, even though it usually turns out to be type 2.

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i suppose i always did like to stand out from the crowdā€¦:wink::rofl::roll_eyes:

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Hi @MM2, @bkh, the phenomenon of a slim type 2 is interesting as it goes against what little I thought I knew about type 2 diabetes. That insulin resistance was caused by lipid storage not just in adipose tissues, but other tissues in the body (and that kind of necessarily comes with a heavier/ fat carrying build)
Is it possible the condition has advanced in both cases to where they are no longer producing much insulin anymore? I donā€™t mean to pry, but if you feel comfortable sharing Iā€™m curious.

In the time since I last posted, I am scheduled to get a GAD antibody test coming up soon, I will also get another C peptide. It also seems that I have started entering remission/honeymoon phase. There had been several strange occasions in my graphs in January that made me think I might be producing a little of my own insulin but otherwise, my graph was v reactive to injected insulin and any food I ate. In late Feb, I noticed a huge change that made me think at first I had been misdiagnosed. I started going low just sitting around the house/working on my computer one weekend, and the week after that my bolus insulin use dropped to about a third (I scaled back my basal two units) and my glucose stayed in normal range. In the evenings after my last meal it would come down to healthy fasting range on its own. After 4 months of really difficult glycemic control w exercise and insulin, and 8-10 months undiagnosed and unmanaged, It was shockingly abrupt.
I hope to prolong my honeymoon phase as much as possible, I think exercise has helped me tremendously, as I noticed when Iā€™d go on long walks, I could eat say a small apple and have a little iced coffee without spiking out of range, and which would come down gradually w/o bolusā€“unbelievable after struggling earlier. I notice walking helps my insulin production (not just the muscle contraction of walking bc the effect lasts when sitting down even after a relatively short walk) and work days where I cant go for long walks, I use more insulin and my glucose goes to higher levels even with low carb low gly meals.

Hi Moonbeam, I understand your skepticism. I also recently saw an endo who agrees LADA is kind of a deprecated term, that itā€™s just helpful to those giving a diagnosis bc it reminds them Type 1 can affect adults and it will present a bit different than in children.

And to circle back to your skepticism of remission without a proof-positive autoantibody test, I read an interesting paper about a man who experienced remission for six years, no insulin, while testing positive for four antibodies. Six-Year Complete Remission of Type-1 Diabetes Mellitus in an Adult Treated With Sitagliptin - PMC
It is estimated that regular aerobic activity may have an immune-mediating effect

Iā€™ve heard that can happen. With type 2, the C-peptide rises higher and higher over time as the body makes more and more insulin to compensate for the insulin resistance. But eventually the pancreas ā€œwears out,ā€ the insulin production falls (so the C-peptide falls), possibly leading to the need for injections of basal insulin, and later also bolus insulin. It went that way for my cousin-in-law over a couple decades or so.

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One correction, it is only less than 1% of the pancreas that fails in advanced T2DM or T1DM, the Beta cells. The pancreas is a complex organ with the bulk of its mass producing and routing exogenic digestive enzymes to the digestive system. Plus the endocrine Islets of Langerhans have Alpha cells secrete glucagon, Delta cells secrete somatostatin and F cells secreting pancreatic polypeptide. All these are part of the glucose regulatory system.

Iā€™m case of advanced insulin resistant type 2 diabetes mellitus. My last C-Peptide test 3 years ago was less than 1. The rest of my pancreas, both endocrine and exocrine work just fine thank you.

The loss of endocrine and exocrine pancreatic function is a third type of diabetes mellitus- type 3c. Depending on how extensive the damage, they may have to inject/infuse insulin and glucagon and take oral supplemental digestive enzymes with every meal. This is total pancreatic failure.

I stated immunotherapy this morning. There are some serious side effect with both Opdivo and Keytruda, fortunately fairly uncommon. One is causing type 1 DM. If that happens to me, who would know. Nothing would change. I would be a type1 with insulin resistance, big whoop.

Sorry to make a big deal out of it. I worked in a field that required to not use words that can lead to misunderstanding. I am retired, but 45 years has engraved it in my brain.

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Iā€™m delighted to have the correction and elaboration by someone who knows so much more on the topic. Thatā€™s one of the great features of this site by comparison with others where misinformation lingers and sometimes is even welcomed to promote ā€œengagement.ā€ Iā€™m still sore about a site where someone asserted that the flu vaccine should not be taken because it is dangerous, and I replied that their assertion was factually incorrect (with a link to a reputable source) and a moderator PMā€™d me and basically explained that all opinions were welcome and equally valued and I should be careful not to hurt the feelings of the person spouting dangerously incorrect medical misinformation.

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@bkh omg you are so much more composed than i amā€¦. i would have blown an absolute gasket, FACTS ARE NOT OPINIONS!!! :rofl::+1: and fact: the flu vaccine is safe and effective. :+1:

There is a Texan expression that many Texans should remember and take to heart. Iā€™m going to use medical terminology as opposed to the scatologicl.

Opinions are like anal sphincters. Everyone has one and they all stink.

I hope I didnā€™t offend anyone.

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@CarlosLuis And weā€™re all with you in spirit as you start the next part of your journey!

You and a few others here on FUD obviously have a lot of info on the T1/T2 origins with the various pancreas cells. I read an article about the complex nature and may not understand it all, but gained an appreciation for what it should be working like. Our bodies are truly amazing!

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:flushed: :flushed: :roll_eyes:

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Getting my lab results back, I am very positive for Anti Gad 65, making high levels. My next move will be to try to mitigate this, in my research Iā€™ve found some leads to ask my PCP and endo about.

I canā€™t help but notice the stony and somewhat condescending responses. Before posting this I looked to see if anyone had mentioned either Kotze or Darkes and saw Chris and TiaGā€™s posts, which were not responded to in this way.
Bit disappointing.

Iā€™m reading that as an invitation for a more frank discussion of how your thread has been received. Naturally I can only speak for myself, but I suppose my impressions are typical for this web community.

The context is that I think that auto-immune diabetes (type 1) is a disease that can be managed very well, so I can live a ā€œfully unlimitedā€ life. All I must do is learn how to supply the insulin that my body no longer supplies automatically. Itā€™s only nuisance, nothing worse. The current understanding of type 1 by medical science is that there is no cure, despite numerous strenuous efforts over the past decades, with much initial optimism. I can hope for a future cure, but the current reality is that I am a diabetic and need to deal with that.

Into this context, you opened a thread with a post that I summarize as ā€œHi, Iā€™ve recently been diagnosed as a type 1 diabetic, and Iā€™m seriously scrounging all corners of the internet to find out how to make that not be true. So far Iā€™ve found two people who say they had type 1 and were able to undo it, so this gives me hope.ā€

My frank response is that you are a type 1 diabetic, there is no cure. In particular, there is no regimen of diet and exercise that will make your disease go away. Accept this reality fully, learn how to manage it, and you can live a fully unlimited life.

I suppressed that advice when you first posted, because I didnā€™t want to be discouraging to a newcomer. Now that Iā€™ve seen several of your posts, I donā€™t think you are trolling or proposing the ā€œcinnamon cureā€ so Iā€™m willing to speak up. I think your initial post would have been received more enthusiastically if it had a different tone, for instance, "Iā€™m a newly-diagnosed type 1, and Iā€™m here to find out how to deal with it well. That said, I can see from my reading of the literature that there have been many unsuccessful attempts over the years to cure, prevent, or stop the progression of type 1 diabetes. Nevertheless, I found a couple cases of people who were diagnosed type 1, and after several years they no longer need insulin (reference links here). Wouldnā€™t it be cool if there really was something significant there? Whatā€™s special about these cases, and is there anything useful to be learned from them? Does anyone here know if these cases have been looked into properly?ā€

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As someone also recently diagnosed, I confess that I was also reluctant to accept it. I looked high and low for information. I encountered the reversal stories of course. I read a bit about them, but concluded that the (isolated, they do not seem replicable) claims of T1 reversal were scientifically unsubstantiated. In fact it seems medical science does not fully understand the underlying cause or nature of T1 (which for that matter, may well be a category containing multiple distinct illnesses). It is possible but exceedingly rare to trip into a true cure for a condition whose root cause(s) and mechanism(s) is/are yet unknown. To me, this suggests a probability approaching zero that a cure for T1 is on the imminent horizon.

Hope doesnā€™t hurt anything, but hope is not a plan. Hope will not help me live my life today. The claims of reversal are scientifically unsubstantiated as far as I can tell, and do not seem to be part of any replicable pattern even if one gives the benefit of the doubt as to their veracity. I think people here are reacting to what appears a possible mismatch between what youā€™re looking for, and what this forum can offerā€¦? If a cure is what youā€™re chasing, this forum canā€™t help you with that. What the folks here can (and do!) offer is a wealth of experience and perspectives that can help you live the life you want without being limited by your bum pancreas. I have found their shared wisdom invaluable and am confident it has saved me years of frustrating experimentation and failure, which consequently has set me free to basically begin reclaiming my life now instead of later. Nobody here can help with a hope for reversal or cure, but they can and will help with management stuff and moral support. If there is ever solid evidence, progress, or the appearance of a cure, I am certain it would enter the discourse here! But until or if that day comes, what this community does is empower its members to live their best lives with diabetes.

What I am learning though is that the science is advancing, but it has a long way yet to go. Lucky for me I have diabetes mentors on the intertubes, and modern instrumentation tools and medicines that make it easier than ever before to fly this pancreatic plane on manual. For whatever itā€™s worth, my world opened up and I began regaining freedoms and confidence daily once I accepted my new reality and dedicated myself to the task of learning effective management of my new and likely permanent condition, Type 1 diabetes. FUD has been absolutely central to that learning and the doors it opens for me.

I have also never found a more civil, caring community anywhere on the internet. This is a special place and it has a lot to offer as long as what youā€™re seeking aligns with what its many amazing denizens know and can realistically do.

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@ninako Itā€™s easy to misinterpret email and other written short form responses. What you seem to think ā€œstonyā€ may be reticence to burst the bubble of the recently diagnosed that may still be in the denial stage of the diagnosis (that isnā€™t me being judgy, itā€™s a few years of experience speaking).

I think weā€™d all ā€œlikeā€ to be able to offer you encouragement, and itā€™s possible that such a claim may exist in the future, but most of those here pretty much ā€œknowā€ such current claims are not likely realistic and it would be disingenuous to offer you false hope. If you want to research it and report back any findings, positive or negative, please do soā€¦weā€™d love to hear were wrong and would welcome any news!

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