Causes of remission lapse

chrisjohnh · Sep 15, 2022

I haven’t seen any formal studies of this question but it is one in which I think many of us would have an interest. It is this. If someone gets into T2D remission by diet and exercise alone, no meds at all and no other illnesses or poor health, and faithfully maintains their diet and exercise regimen, then (a) how likely is it that despite all that they will have gradually rising BG and land up on the drugs and complications road and (b) if that happens is it because their diabetes is still festering underneath and progressively damaging their organs. Why are we seeing members who had remission for several or many years but have since become embroiled in drugs and finally insulin? Trying to compute my likely destiny, I suppose, hoping that remission is not ultimately a fool’s errand for all our best efforts.

ianf0ster · Sep 15, 2022

Just a personal view from reading posts in both 'red' and 'blue' forums:
There are several things including long term illness and long term medications which can cause Type2 diabetics to fall out of remission. There is also a number of supposed T2s who turn out to be T1/LADA and so fall out of apparent remission.

However I have not heard of any diet controlled T2 in remission who has fallen out of it without having relaxed their diet/exercise. However the longest I recall somebody saying they are a T2 in diet controlled remission is 10yrs. Though until very recently almost all doctors thought T2 was progressive and irreversible even with the best available drugs.

lucylocket61 · Sep 15, 2022

chrisjohnh said:
I haven’t seen any formal studies of this question but it is one in which I think many of us would have an interest. It is this. If someone gets into T2D remission by diet and exercise alone, no meds at all and no other illnesses or poor health, and faithfully maintains their diet and exercise regimen, then (a) how likely is it that despite all that they will have gradually rising BG and land up on the drugs and complications road and (b) if that happens is it because their diabetes is still festering underneath and progressively damaging their organs. Why are we seeing members who had remission for several or many years but have since become embroiled in drugs and finally insulin? Trying to compute my likely destiny, I suppose, hoping that remission is not ultimately a fool’s errand for all our best efforts.

We are all different. Our bodies respond differently. It's not predictable. We can only do our best and see what happens

chrisjohnh · Sep 15, 2022

But is it currently unpredictable because good datasets from scientifically-conducted relapse observations had revealed that there exist no useful predictors among that data, or is it because no such datasets yet exist leaving us only with guesswork or "wait and see" ?

chrisjohnh · Sep 15, 2022

Equivalently, is it unpredictable as a consequence of knowledge or as a consequence of lack of knowledge?

chrisjohnh · Sep 15, 2022

ianf0ster said:
Just a personal view from reading posts in both 'red' and 'blue' forums:
There are several things including long term illness and long term medications which can cause Type2 diabetics to fall out of remission. There is also a number of supposed T2s who turn out to be T1/LADA and so fall out of apparent remission.

However I have not heard of any diet controlled T2 in remission who has fallen out of it without having relaxed their diet/exercise. However the longest I recall somebody saying they are a T2 in diet controlled remission is 10yrs. Though until very recently almost all doctors thought T2 was progressive and irreversible even with the best available drugs.

"I have not heard of any diet controlled T2 in remission who has fallen out of it without having relaxed their diet/exercise."

This is the key statement. Is there no member who has ever posted a story along the lines: "I was in remission for 5 years by diet and exercise alone and despite maintaining my regimen and staying otherwise perfectly healthy, I now find my HbA1c rising inexorably and mysteriously"?

lucylocket61 · Sep 15, 2022

chrisjohnh said:
"I have not heard of any diet controlled T2 in remission who has fallen out of it without having relaxed their diet/exercise."

This is the key statement. Is there no member who has ever posted a story along the lines: "I was in remission for 5 years by diet and exercise alone and despite maintaining my regimen and staying otherwise perfectly healthy, I now find my HbA1c rising inexorably and mysteriously"?

Yes, there are several. There is no way to guarantee length of remission for all. I have stayed diet oy for nearly 11 years, but I know this can change, no matter what I do to try to stop it.

Uncertainty is part of life.

AndBreathe · Sep 15, 2022

chrisjohnh said:
I haven’t seen any formal studies of this question but it is one in which I think many of us would have an interest. It is this. If someone gets into T2D remission by diet and exercise alone, no meds at all and no other illnesses or poor health, and faithfully maintains their diet and exercise regimen, then (a) how likely is it that despite all that they will have gradually rising BG and land up on the drugs and complications road and (b) if that happens is it because their diabetes is still festering underneath and progressively damaging their organs. Why are we seeing members who had remission for several or many years but have since become embroiled in drugs and finally insulin? Trying to compute my likely destiny, I suppose, hoping that remission is not ultimately a fool’s errand for all our best efforts.

Well, I am 8.5 years in and doing OK, with A1cs remaining under 35.

If you are talking forever and ever, the prospect of an individual remaining Scott free of any conditions is quite low - even if that be arthritis which can seek out even those living healthy, active liefstyles.

There is some interesting work going on at present, including populations in remission. Whilst those in remission aren't always excluded from diabetes research, the percentage of the T2 population achieving and sustaining remission isn't very high (and is actually unknown).

Most of the work I am seeing at the moment is looking at cardiac healthy, but I have seen "talk" of looking at the eyes as predictors of the longer term, because MRIs and CTs are much more costly.

For me? I'll just try to keep living my best life and making it a good life, not missing out on anything. As nobody gets out of this life alive, I'm not going to be sitting around fretting about bad things happening, because not everything can be controlled.

AndBreathe · Sep 15, 2022

chrisjohnh said:
But is it currently unpredictable because good datasets from scientifically-conducted relapse observations had revealed that there exist no useful predictors among that data, or is it because no such datasets yet exist leaving us only with guesswork or "wait and see" ?

Data sets for those in remission, in UK at least, are "patchy", at the very best. Until a baseline is understood, understanding the Baseline+ Y time is futile.

Heck. GPs and other HCPs can't even agree remission exists, never mind define it in order to record it.

chrisjohnh · Sep 15, 2022

"Yes, there are several."

If we knew from studies that such cases were, say, 1% of all those who had initially got into remission, then we would have a clearer position than merely saying "it is unpredictable", surely. We would be able to say that if someone maintained their regimen and remained healthy, then they'd have a 99% chance of staying in remission. Of course, we could not predict "which" people were in the 1%. But we would have a reason to be confident that remission was a worthwhile objective, and not be merely in the dark about it. Uncertainty becomes much less a part of life when one has statistically significant data to go on.

chrisjohnh · Sep 15, 2022

AndBreathe said:
Well, I am 8.5 years in and doing OK, with A1cs remaining under 35.

If you are talking forever and ever, the prospect of an individual remaining Scott free of any conditions is quite low - even if that be arthritis which can seek out even those living healthy, active liefstyles.

There is some interesting work going on at present, including populations in remission. Whilst those in remission aren't always excluded from diabetes research, the percentage of the T2 population achieving and sustaining remission isn't very high (and is actually unknown).

Most of the work I am seeing at the moment is looking at cardiac healthy, but I have seen "talk" of looking at the eyes as predictors of the longer term, because MRIs and CTs are much more costly.

For me? I'll just try to keep living my best life and making it a good life, not missing out on anything. As nobody gets out of this life alive, I'm not going to be sitting around fretting about bad things happening, because not everything can be controlled.

Thank you very much for the insights above, and in the subsequent post. Much appreciated clarity there.

ianf0ster · Sep 15, 2022

lucylocket61 said:
Yes, there are several. There is no way to guarantee length of remission for all. I have stayed diet oy for nearly 11 years, but I know this can change, no matter what I do to try to stop it.

Uncertainty is part of life.

@lucylocket61 As I understand it, in your case illness has been the main cause of your problems in maintaining remission,
Unfortunately it isn't useful to just advise people not to get ill.

lucylocket61 · Sep 15, 2022

ianf0ster said:
@lucylocket61 As I understand it, in your case illness has been the main cause of your problems in maintaining remission,
Unfortunately it isn't useful to just advise people not to get ill.

Sorry, I don't understand your post. I haven't advised anyone to not get ill. Can you explain what you mean please.

Oldvatr · Sep 15, 2022

Most research in diabetes is paid for and performed by the pharmaceutical industry. There is no money in following remission once it has happened. There is money to be made from relapse. This may explain why there is no researh into remission.

The other problem is that once remission has been confirmed, most doctors stop monitoring their patients. We get taken off the books. Ticked the box, next step kick the bucket. Life can be cruel.

AndBreathe · Sep 15, 2022

chrisjohnh said:
"Yes, there are several."

If we knew from studies that such cases were, say, 1% of all those who had initially got into remission, then we would have a clearer position than merely saying "it is unpredictable", surely. We would be able to say that if someone maintained their regimen and remained healthy, then they'd have a 99% chance of staying in remission. Of course, we could not predict "which" people were in the 1%. But we would have a reason to be confident that remission was a worthwhile objective, and not be merely in the dark about it. Uncertainty becomes much less a part of life when one has statistically significant data to go on.

Do you maintain your regimen on a daily basis, because that may not be enough, if what we are led to believe is true, in that as we age, some things don't work quite so well. An example might be our kidneys. It is also considered harder to maintain good, dense muscle mass in later years, all of which impacts life.

Predictions are all very well, but even if the likelyhood of an outcome is 99%, it means there is always the 1% swimming against life's flow. That 1% can be good or bad, depending on the subject of the prediction.

If, an example, you were told there was a 67% (figure picked from the air) chance you would end up on insulin, whatever you did, could that influence your actions?

chrisjohnh · Sep 15, 2022

Oldvatr said:
Most research in diabetes is paid for and performed by the pharmaceutical industry. There is no money in following remission once it has happened. There is money to be made from relapse. This may explain why there is no researh into remission.

The other problem is that once remission has been confirmed, most doctors stop monitoring their patients. We get taken off the books. Ticked the box, next step kick the bucket. Life can be cruel.

My goodness, these are sobering thoughts indeed. I can see that my question has been somewhat naive regarding prospects of post-remission studies.

chrisjohnh · Sep 15, 2022

AndBreathe said:
Do you maintain your regimen on a daily basis, because that may not be enough, if what we are led to believe is true, in that as we age, some things don't work quite so well. An example might be our kidneys. It is also considered harder to maintain good, dense muscle mass in later years, all of which impacts life.

Predictions are all very well, but even if the likelyhood of an outcome is 99%, it means there is always the 1% swimming against life's flow. That 1% can be good or bad, depending on the subject of the prediction.

If, an example, you were told there was a 67% (figure picked from the air) chance you would end up on insulin, whatever you did, could that influence your actions?

I certainly take your point about other things like kidneys gradually declining with age and so impacting on remission maintenance; certainly some things we just cannot fight against, passage of time most of all.
As for the 67% challenge, now there's a teaser. It's quite a high figure. If you also added "and you were also told that 50% of those who go onto insulin land up with sepsis, gangrene, amputation and premature death" then, combining those two percentages I suspect I'd be driving down to a lonely cliff somewhere - because that was exactly the fate of my grandmother.

chrisjohnh · Sep 15, 2022

Anyway, I would not want the thread to go on and on, I was just curious about the state of knowledge on this, and I much appreciate the many responses from you all. The priority is to do the best for ourselves, but also to do the best we can in encouraging those who arrive new to the site with all their worries and fears and needs, just as I once came to this site and knew immediately it was the very best I could possibly have come to.

So for myself I'd be content to close the discussion here. Numbers are not everything, but goodwill is.

AndBreathe · Sep 15, 2022

chrisjohnh said:
I certainly take your point about other things like kidneys gradually declining with age and so impacting on remission maintenance; certainly some things we just cannot fight against, passage of time most of all.
As for the 67% challenge, now there's a teaser. It's quite a high figure. If you also added "and you were also told that 50% of those who go onto insulin land up with sepsis, gangrene, amputation and premature death" then, combining those two percentages I suspect I'd be driving down to a lonely cliff somewhere - because that was exactly the fate of my grandmother.

I don't know when your grandmother was having that terrible time, but whenever it was I am sorry that she and those she loved and who loved her had to go through that.
Bottom line is, we are fortunate to know a bit about diabetes these days. If your grandmother was of my parents' and grandparents' generation things were less clear.

However, nothing in that takes away that a 99% chance of something still leaves 1% not going down the expected path. I reiterate, in my view, the best we can do is try to live our best lives, but LIVE it, not live in fear if life itself.

Don't get me wrong, I am in no hurry to reach life's exit, but when my time comes near, I hope I can look back on the memories made and the adventures lived, and know I've tried along the way to stay well, rather than only being able to review my perfect sets of A1c results over the years.

What are you hoping to actually achieve in all this? If it is certainty, then I hate to tell you there are only two certainties in life. The most important of which is we don't get out of this life alive, no matter how well we live.

Edited to add: Cross posted. No need for a response

Oldvatr · Sep 15, 2022

chrisjohnh said:
I certainly take your point about other things like kidneys gradually declining with age and so impacting on remission maintenance; certainly some things we just cannot fight against, passage of time most of all.
As for the 67% challenge, now there's a teaser. It's quite a high figure. If you also added "and you were also told that 50% of those who go onto insulin land up with sepsis, gangrene, amputation and premature death" then, combining those two percentages I suspect I'd be driving down to a lonely cliff somewhere - because that was exactly the fate of my grandmother.

I am a T2D of some 30 years now, and I am a contemporary of yours. I used to run happily on high octane blood sugars (HbA1c above 100) but 8 years ago decided to take it seriously especially since my mother was taken by T1D at age 54. So I have been a low carber since that decision. I lost 8 stone weight and am steady at 10 stone with a BMI of 21 or 22. I have been below 48 on all my HbA1c;s since decision day, but I do not consider myself in remission. I did have 2 doctors declare me in remission, but I was in hospital at the time and Eatwell guaranteed that it was short lived. I am happy taking minimum dose of a medication which is a lot less thn I was tking 8 years ago. I am just happy to have not progressed as had been predicted.

Causes of remission lapse

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