LADA – how did you experience the progression of the illness?

Hello everybody,

I have recently been diagnosed with a late onset Type 1 diabetes. I have only been on this forum for a couple of weeks but have learned so much already and received so much fantastic feedback, for which I wanted to say a big thank you!
Since I seem to be in my "honeymoon period" at the moment I have very little insulin requirements a long as I stick to a low carb diet. I do not have to use basal insulin (YET) and only inject for meals that have a fair amount of carbs, which is not very often.
So I have it relatively easy at the moment I would say, so easy in fact that I am starting to wonder how I will cope when "the other shoe finally drops" , the beta cells are finally giving up and I will be a full blown T1 diabetic. Which is why I would LOVE it if other people who have gone through a similar experience and have now left their honeymoon behind would share their stories. I am a little bit scared that it gets very overwhelming once the LADA progresses. Did you find it very hard go through that "second transition"? Or was it a smooth progression and didnt really change much for you- meaning with or without the honeymoon it could be managed in a similar way?
I guess I am mainly scared of handling low BG, or extremely high ones, or feeling that I cannot do certain things as easily anymore once I have exogenous insulin in my body around the clock.
How much more challenging does it get? Thank you so much in advance for sharing!

Like a lot of things in life some people adapt better than others. I was the kind who didn't want to face things for a long time. You are taking insulin already so that at least you have faced. The lows can be annoying more than anything else and with the highs, well they can be fixed. You will get to know what works for you. I'm always doing little adjustments here and there because no two days are exactly alike and my body is changing all the time. It does take up a lot of time but it becomes second nature. There's no reason why you can't do things you want, just a little more preparation. Not gonna pretend its all plain sailing, sometime you can get seriously fed up with it all. Motivation is what gets me the most. It seems to me that people who are recently diagnosed are much more " with it " than I was, there's a lot more information and a better understanding of how to manage D now. You'll be fine.

Hi Julez: Josephine has given you some very sage advice! I am now into 17+ years of this adult-onset Type 1 diabetes journey, and yes it has changed over time. You are so very lucky to have some of the modern technology that I did not have 17 years ago, when I started on Regular insulin and NPH. Ack! Lows were quite common using R, so I never had a time that I did not have to deal with hypos. My honeymoon did last a while and I would encourage you to do anything possible to prolong yours. If you can prolong your honeymoon for a very long time, things will be much easier and not so challenging. For me, control has become more challenging with time after my honeymoon ended at ~1 year, but the new technology (insulin pump, insulin analogs, and Dexcom continuous glucose monitor) has helped even the playing field. You have to really plan and have good backup, but I know it is possible to live an excellent life in spite of the diabetes.

i am the same way now, too. my insulin needs have been up and down about 7 times in the past year. i was constantly preoccupied about when it would all end. the last time things bugged out was in august-more insulin than ever necessary and random highs. i thought it was the end of the honeymoon. after a week or so of chasing those highs down it started feeling like the new normal. these little changes are preparing me for the big change.
i must say that im much more relaxed about things when my insulin needs go down again and i feel more in control. i feel more at ease but just wish i could know when it was going to happen, to savour those extra squares of chocolate, knowing my slightly high bg will come down itself. for me its the not knowing. after i was diagnosed i kept thinking, if only id known a couple of months ago, idve had pancakes every day for breakfast! same now with the extra choc.

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I don’t know how tell you the phases(since I was obese when diagnosed with LADA)but for me I was diagnosed at 19 started on intermediate + short acting regiment(very horrible regiment if you ask me)my dosage daily was 60 split in to 2.
But now I lost 70 pounds(and believe me it wasn’t intentional half of my intestine and stomach was removed)I’m now on lantus 18 unit basal and novorapid as correctional dose.
It’s hard for the first 2 years but after the first 2 years it gets easier , more like a habit(regular strip testing,shots 4times a day,hypos in really awkward places,telling some strange dude to get you some suger before you collapse :D,and yes happened on more than one occasion) but the point is everyone seems to have a unique number of phases and progression(some slow, some fast , and some with unusual phenomenons with there diabetes).But as long as you keep checking your levels and regular follow up with lab works and dosages you’ll be fine.

At 34 I had ignored the symptoms for almost a year, I basically just pushed myself until I could no longer function (heck I could barely take a breath) when my wife took me to our doctor I could no longer drive or walk. If there was a Honeymoon I missed was like hitting a brick wall......and my BG has never been easy to control and the fist 10 years was the dark years with no one helping me. My doctor would ask me how are you doing and give me a new Rx...that was it. Things have changed in the Bete's world...early diagnoses and much better insulin.

My wife and I have raised two children, I have had a wonderful life....on paper....;-).....your going to be OK... just lean into it life's is good.