Man reverses Adult Onset T1D? - Johan Kotze

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)

Johan Kotze- T1D Cured?

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.

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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.

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