Another 3 months on

[rayq81]

At my last blood test I wrote a post on here that my hba1c had come down to 41 from 65, a few weeks ago I had a call from the hospital consultant who had a chat to me and he was surprised that I was managing without insulin, he then told me he would speak to my GP and try reducing my Metformin to see what effect this would have.

I was taking 2 tablets at breakfast and 2 with my evening meal and my GP told me to try going to 1 tablet morning and 1 in the afternoon but to monitor closely and report any big spikes through the day.

Initially it did go up a little bit overall and my range dropped from 95% to 89%, however I increased my exercise regime and any meal that sends my Libra reading over 11.5 I get on the treadmill for 10-20 minutes which always gets it back in range, I am now back over 90% in range and it seems to be steady for the time being, I have not got to 15 at any point on the Libra in 7 months.

Has anyone else been in this situation where the original diagnosis was looking really bad but has improved to the point that diet and exercise is controlling this type of diabetes with just 2 Metformin a day ? Am I being too optimistic to think I may not need insulin long term or is this just me thinking I can beat the unbeatable.

My antibodies have also shown a big improvement over the 2 tests and although gad 65 is still reading it's not where it was last year when I was first tested.

 

[Melgar]

Interesting and a big congrats on your Ac1 reduction. I also exercise after meals to knock down my blood sugar rises. It works, so I keep doing it. Maybe you have reduced your insulin resistance doing all that treadmill exercise. I did that very low carb diet thing for 9 months did little to reduce my blood sugars, but it did stop the rise which I was very pleased with (big caveat here they are not sure what type of diabetes I have, so please bear this in mind). Reducing Metformin, I also wonder whether your liver dumping glucogen into your system was not such an issue in raising your blood sugars, as a type 1 that is. Although with Lada you would expect elements of type 2 in the mix. The other thing I wondered, please take this with a pinch of salt, is with the lowering of your blood sugars, has it tempered the immune response on your beta cells. I say this because I have Coeliac, the only course of action for Coeliac sufferers is a complete avoidance of gluten. Without gluten in your system there is no immune attack and therefore no antibodies are produced. Just throwing those thoughts out there and really they are only thoughts.

 

[HSSS]

Although with Lada you would expect elements of type 2 in the mix.

Why? My understanding was that lada is simply a slow adult onset variant of type 1 and nothing to do with type 2

 

[Melgar]

Why? My understanding was that lada is simply a slow adult onset variant of type 1 and nothing to do with type 2

Good question, I guess that is why it is often called type 1.5 and not simply type 1.

Latent Autoimmune Diabetes - StatPearls - NCBI Bookshelf

 

[Vectian]

At my last blood test I wrote a post on here that my hba1c had come down to 41 from 65, a few weeks ago I had a call from the hospital consultant who had a chat to me and he was surprised that I was managing without insulin, he then told me he would speak to my GP and try reducing my Metformin to see what effect this would have.

I was taking 2 tablets at breakfast and 2 with my evening meal and my GP told me to try going to 1 tablet morning and 1 in the afternoon but to monitor closely and report any big spikes through the day.

Initially it did go up a little bit overall and my range dropped from 95% to 89%, however I increased my exercise regime and any meal that sends my Libra reading over 11.5 I get on the treadmill for 10-20 minutes which always gets it back in range, I am now back over 90% in range and it seems to be steady for the time being, I have not got to 15 at any point on the Libra in 7 months.

Has anyone else been in this situation where the original diagnosis was looking really bad but has improved to the point that diet and exercise is controlling this type of diabetes with just 2 Metformin a day ? Am I being too optimistic to think I may not need insulin long term or is this just me thinking I can beat the unbeatable.

My antibodies have also shown a big improvement over the 2 tests and although gad 65 is still reading it's not where it was last year when I was first tested.

I know this post was a while ago but just seen it. Yes I am in a similar position, initial A1C of 97, I had background + bolus insulin for 1 week which made me feel very ill, then continued with just bolus for 3 weeks, then stopped altogether. I have had no insulin or medication whatsoever for 7 weeks now and BS pretty much 100% in target range, averaging around 6.1 (although the CGM often reads higher than it is for me). I am keeping it in check with low carb diet and a bit of exercise (10-20 mins brisk walk) after most meals. I haven't been allowed to see a consultant so far but they can't explain it and won't entertain that diet can control it, at least for a time.

Look up extending the honeymoon phase, there is quite a bit about it online, Dr. Bernstein I think mentions low carb and another study says about exercise for extending it. I'm also taking taurine and GABA, which is what the antibodies prevent your body from making.

 

[Melgar]

@Vectian I‘m Not on insulin so I’m not much use. I’m going to tag @Antje77 and @EllieM who may be able to shed some light.

 

[Antje77]

@Vectian I‘m Not on insulin so I’m not much use. I’m going to tag @Antje77 and @EllieM who may be able to shed some light.

Looks like a nice honeymoon.
More on the issue here: https://www.diabetes.co.uk/forum/threads/is-it-possible-to-have-lada-1-5-with-high-c-peptide.204182/

 

[Vectian]

Looks like a nice honeymoon.
More on the issue here: https://www.diabetes.co.uk/forum/threads/is-it-possible-to-have-lada-1-5-with-high-c-peptide.204182/

I started that thread... I have been doing some research into the honeymoon period, there is a paper that pulls together the results of many studies. About 10% of the diabetic adult population are T1, more like 5% of newly diagnosed diabetics at my age. Within that 10%, around 50% have a honeymoon period, usually needing less insulin.

Only 3% at most have what they call complete remission which is no insulin at all, so that would be 3% of 10% or 0.3% (max) of adult diabetics, or more like 0.15% at my age. Put another way, 99.85% of diabetics don't have T1 with a period of complete remission. Seems odd statistically. I can't find anything definitive as to whether you can have GAD antibodies and T2, seems to be a lot of disagreement.

 

[rayq81]

Short update, I relaxed on my ultra strict eating regime and continued with the exercise, my most recent HBa1c is sitting at 43 but that takes into a country the period of reduced Metformin, the doctor is still scratching her head a bit and says carry on doing what I am doing but expect at some point that the honeymoon period will be over, well let's see what happens I am a year in now and managed to avoid the insulin without suffering any big spike in my levels, sometimes I feel like I don't even have diabetes but that's just wishful thinking.

 

[Alexandra100]

I am a year in now and managed to avoid the insulin without suffering any big spike in my levels,

Very well-done all your efforts with diet and exercise. I watch all Richard K Bernstein's Youtube videos, where he replies to questions sent in. Recently, he was asked whether Ladas inevitably progressed to being on insulin. (This seems to be the general, depressing conviction of almost all doctors, endos and medical journalists, but they get so much else wrong about diabetes, I don't think we should take their views too much to heart).

Dr B said he had one T1.5 patient who for decades had controlled her bg levels with a strict low carb diet and was still managing to escape injecting insulin. My view is that I am willing to make big efforts to avoid insulin therapy, but that no-one should feel a failure if they can't manage without. There is a theory that keeping one's bg low gives the pancreas a rest, making it possible for it to go on functioning for longer. However it is only a theory.

Whether we end up needing injected insulin must surely be influenced by our age. I am now 82, so I am hoping to escape.

Btw 43 does count as pre-diabetic. According to research, even pre-diabetes greatly raises our risk of heart problems.

 

[Melgar]

Very Interesting what Dr B has to say. It reminded me of a blog I read quite a while ago now about this young woman who was able to maintain normal blood sugars through a very low carb diet even though she was diagnosed LADA.
Here is the link to her blog.

LADA and life after bagels: a low-carb journey

Jessica Apple was diagnosed with LADA at the age of 35. Together with her husband Mike, she has embarked on a low-carb journey to manage her condition.

diabetesvoice.org

 

[Chris24Main]

It's a really tough question, and one that I think just doesn't have a simple answer - I was in a similar situation, though for me it was simply that my diagnosis was not clear for a while, and my notes from the time go into advice I was given about the likelihood that my pancreas was failing - or not. There was a lot of discussion about "reserves being used up" and "rates of destruction" - but essentially all my learning since would indicate that all the advice I was initially getting was wrong.

Not that this means I am correct, and one person's experience does not necessarily mean anything useful, but my experience was that all my doctors were of the opinion that the Pancreas would just get worse..

However, if you look at it all as a consequence of insulin resistance in the Pancreatic cells, then the treatment - pump in more insulin - will produce the observable result that the pancreas itself is failing, because your blood glucose will be increasing for a given dosage, so the conclusion will be to increase the dosage, and so it goes.

The flip of that (the other way of thinking about it) is that, by the time your blood glucose is showing very high, your pancreas is undoubtedly struggling to keep up with demand, so a period of exogenous insulin may be the thing that it needs to recover (provided you are doing something to reduce demand for insulin on an on-going basis, like reducing carbs).

But - the underlying question is really about the capacity of the pancreas to recover - or not. Most of what I've read and listened to gets into - there really isn't anything to suggest that a pancreas cannot recover. It's assumed, and statistically there are results that suggest... but there isn't anything definitive, and no mechanism that would explain a pancreas just losing it's ability (gradually over time rather than suddenly in childhood) to produce insulin.

Again - that's my reading of the literature, not an opinion that's worth anything in itself, but my takeaway is that as an individual, anything you can do to support the recovery of the pancreas should be attempted, and just accepting it as a lost cause feels wrong.

 

[rayq81]

End of December 2024, well surprisingly enough I am still not on the insulin, my HBA1c has not changed, I have maintained my regime of careful eating with exercise to control any spikes, I am currently 96% in range for the last 30 days on my Libre 92% for the last 90 days, it's certainly a long honeymoon period and long may it continue

 

[Chris24Main]

Well - congratulations on this @rayq81 - just had a scan back and that puts you from March till now with no insulin - well done indeed.

I wonder (because this happened to me) how often people just accept taking insulin, and then it becomes a self-confirming fact that you need that insulin. Kudos to you for resisting; I would be tempted to be thinking in terms of marriage rather than honeymoon - don't forget that the overwhelming assumption is still that diabetes is chronic and degenerative - but it doesn't have to be as long as you are producing your own insulin, and you clearly are.
This time last year I thought my pancreas was done for, this year I look back and wonder how I could even have thought that...

 

[Vectian]

It's a really tough question, and one that I think just doesn't have a simple answer - I was in a similar situation, though for me it was simply that my diagnosis was not clear for a while, and my notes from the time go into advice I was given about the likelihood that my pancreas was failing - or not. There was a lot of discussion about "reserves being used up" and "rates of destruction" - but essentially all my learning since would indicate that all the advice I was initially getting was wrong.

Not that this means I am correct, and one person's experience does not necessarily mean anything useful, but my experience was that all my doctors were of the opinion that the Pancreas would just get worse..

However, if you look at it all as a consequence of insulin resistance in the Pancreatic cells, then the treatment - pump in more insulin - will produce the observable result that the pancreas itself is failing, because your blood glucose will be increasing for a given dosage, so the conclusion will be to increase the dosage, and so it goes.

The flip of that (the other way of thinking about it) is that, by the time your blood glucose is showing very high, your pancreas is undoubtedly struggling to keep up with demand, so a period of exogenous insulin may be the thing that it needs to recover (provided you are doing something to reduce demand for insulin on an on-going basis, like reducing carbs).

But - the underlying question is really about the capacity of the pancreas to recover - or not. Most of what I've read and listened to gets into - there really isn't anything to suggest that a pancreas cannot recover. It's assumed, and statistically there are results that suggest... but there isn't anything definitive, and no mechanism that would explain a pancreas just losing it's ability (gradually over time rather than suddenly in childhood) to produce insulin.

Again - that's my reading of the literature, not an opinion that's worth anything in itself, but my takeaway is that as an individual, anything you can do to support the recovery of the pancreas should be attempted, and just accepting it as a lost cause feels wrong.

You are talking about the T2 progression here, which is entirely different to T1 / LADA. Insulin resistance is not the underlying problem in T1. Yes with T2 there is no reason why the pancreas couldn't recover and improve, losing a substantial amount of weight then staying low carb seems to be the key. It also seems that prediabetes is reversible, I.e. you can go back to a more "normal" diet eventually
and the BS stays in range. I have done this myself, and had normal BS for 5 years. However once you cross the line to full diabetes, you can keep it in remission indefinitely, but you still have to control the diet to keep it there. This is why long term rates of remission are not great, people don't stick to the diet and go back to square 1.

With T1 / LADA your pancreas cannot recover in that way as you can't remove what was causing the problem like you can in T2 - the autoimmune attack. There is certain research saying you can maintain beta cell function or even to a limited extent improve it, but the pancreas is still under attack all the time and eventually it will finish. Might be a couple of weeks, might be 15 years. I too have been insulin free for 9 months with LADA, struggling a lot with fatigue trying to maintain it though so maybe I need to take a little insulin now.

 

[Chris24Main]

Totally understand what you are saying @Vectian - indeed a lot of what I find myself posting these days revolves around there being a perception that there is a grey area between T1 and T2 - there is not, and the two are opposite in terms of treatment.

I guess the only thing I can do is to repeat my story - I was treated for nearly a year as a T1 (late onset or not, fundamentally as you say, T1 is characterised by autoimmune attack on the Pancreas) and given insulin. The effect of that insulin was pretty horrendous, and by the end of that year, my dosage had doubled - apparently confirming that I needed the insulin. However - as soon as I had a C-Peptide test that showed my pancreas was functioning - this was clearly not the case.

What I was relating in the post you quoted, was how all of this was explained to me at the time, as I recall being completely confused, - it all seemed to be a question of something going gradually wrong with my pancreas either way, (either way meaning T1/T2) and so I was lacking in insulin, and so adding additional seemed like the right thing to do.

I now understand that I had Too Much insulin, which had led to insulin resistance, meaning that the opposite treatment - Lower the Insulin - was appropriate, and so after taking more responsibility for myself, I actually got my bloods under control in a few months and was listed in remission after 3 consecutive HbA1cs.

- What I am therefore saying more explicitly is that I had been mis-diagnosed as a T1 when I was not. I cannot of course comment on @rayq81 and his diagnosis, but it seems unlikely to me that his Pancreas has suddenly come under auto-immune attack at his age, then agreed some kind of cease-fire for 10 months while he keeps his carbs (therefore insulin) low. It seems much more likely to me, given his C-Peptide is also showing continued function in the β cells, that the underlying issue is insulin resistance, and not a failing pancreas - therefore it seems better for him, given his fantastic efforts; to continue, as opposed to assuming that it's T1 all along, and the auto-immune attack is only waiting to break that cease-fire.

on a purely statistical basis - 90% of diabetes is T2 - 8% T1 and ~2% is Late onset T1 - so the odds are in favour of it being insulin resistance, therefore reversible - therefore worth trying to do that.

or - it could be that simply reducing carbs lowers chronic inflammation, which allows the body more resource to properly manage the auto-immune system; this is one area of research I need to spend more time on; there is a case that the underlying cause of T1 is also a diet too high in carbs and inflammatory oils - just overwhelming the immune system and causing it to go wrong - leading to lupus in some and an attack on the pancreas in others - but all of that is clearly speculation on my part. I'm just saying that all of this is only my opinion based on my own experience, nothing more.

But - rather than trying to figure out what kind of complicated version of diabetes that is LADA, yet still leaves a functioning pancreas, yet at some point will still need insulin - is it not better to really go for remission with diet, as @rayq81 is doing (or even yourself)? it strikes me that even if that turns out to be wrong, and it is some extremely rare form of LADA, it's still better for as long as possible.

On a side note - you talk about fatigue - do you want to elaborate on that? could you give more information about what in your diet is keeping you insulin- free? (sorry for the clumsy phrase, I just don't want to put words in your mouth...)