Oral medication v injections for LADA?

CliffH

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Type 1.5 LADA
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Hi



I was diagnosed with LADA 8 years ago: I'm now in my early 60s. It's always been well managed on low doses of insulin injections (mostly NovaRapid).

I find that (as currently) when I'm doing lots of exercise (cycling, in my case) I need less and less insulin and it becomes harder to prevent my blood sugar level dipping below 4.0. Sometimes I'm injecting no insulin at all for several days at a time and yet my blood sugar level's hardly ever going above 7.0. I have a Libre device, so I can monitor things closely. My current three-month estimated A1C is 5.3% (34 mmol/mol).

My question is: would it be worth me suggesting to my medical team that I try oral Metformin rather than injecting insulin, given how little we seem to know about exactly how LADA affects the body? Thanks very much.


Best wishes,



Cliff
 
LADA is a term which is ill defined so many doctors do not like to use it.
To some, LADA is a type of diabetes which seems to straddle type 1 and type 2 diabetes. Bits of it are more like type 1, and other bits are more like type 2. That's why some people call it type 1.5 diabetes or type 1 ½ diabetes. People with tis definition of LADA may start taking oral medication, usually metformin, and go on to insulin as your blood sugar levels start to go up.
However, the most common definition is a variant of Type 1 diabetes (an autoimmune condition which kills all insulin producing beta cells) which is diagnosed as an adult. People with this definition of LADA are unlikely to experience the level of insulin resistance which requires metformin (or oral medication) and, given you do not need insulin when cycling, I suspect this more likely to be what was meant in your case.

My recommendation is to discuss this with your medical team and maybe suggest further tests to confirm your diagnosis.
 
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Hi and welcome.

This is an interesting situation. Can you tell us do you carb count and adjust your NR for what you are about to eat and then reduce that dose for when you are going to exercise afterwards within the 4-5 hours window that the NR is active? If you don't need any insulin and your levels are not going high without it, and you are having hypos during exercise with it, then it seems sensible not to take it.
I would however be surprised if Metformin or any other oral medication would be helpful and can in some cases bring unwanted side effects. Metformin works by improving insulin resistance which it sounds like you don't suffer from and it helps to reduce the glucose output from your liver, which, if you are not needing any basal (long acting insulin) then again, that is not a problem for you so no benefit but the risk of potential digestive upset which might stop or limit your cycling or make it challenging. Diarrhoea being a common side effect or metformin although it does usually wear off or settle down. Just can't see why it is worth the risk for no apparent benefit.

I am a little curious as to how your LADA diagnosis came about? Presumably you had the antibody tests and C-Peptide? Do you know what the results of those tests were? Were you very active at the time or has the cycling started to help you manage your BG levels? Your situation is rather unusual as most LADA see a slow steady progression from oral meds to needing insulin, rather than the other way around and needing almost no insulin after 8 years is pretty unusual too.
Do you have a half unit pen for your NR or just the disposable plastic FlexPen? If not, a half unit pen would certainly be helpful in your situation. Generally, early introduction of insulin with LADA helps to protect the remaining beta cells, so stopping altogether might be a concern in that sense, that it might make your remaining beta cells more vulnerable to further attack by your immune system, but maybe not. I just can't see how the action of Metformin would be beneficial in your case nor any of the other Type 2 meds, so maybe just having the insulin on hand to use as and when you need it, rather than using it daily.
Are you likely to be cycling or doing similar aerobic exercise right through the winter to help manage your levels?
 
LADA is a term which is ill defined so many doctors do not like to use it.
To some, LADA is a type of diabetes which seems to straddle type 1 and type 2 diabetes. Bits of it are more like type 1, and other bits are more like type 2. That's why some people call it type 1.5 diabetes or type 1 ½ diabetes. People with tis definition of LADA may start taking oral medication, usually metformin, and go on to insulin as your blood sugar levels start to go up.
However, the most common definition is a variant of Type 1 diabetes (an autoimmune condition which kills all insulin producing beta cells) which is diagnosed as an adult. People with this definition of LADA are unlikely to experience the level of insulin resistance which requires metformin (or oral medication) and, given you do not need insulin when cycling, I suspect this more likely to be what was meant in your case.

My recommendation is to discuss this with your medical team and maybe suggest further tests to confirm your diagnosis.
Thanks very much for such a prompt reply! Ever since I was first started on insulin, successive Consultants have been surprised by how well-controlled my diabetes is. I did lots of cycle racing when I was young and I still cycle now just for fun and fitness. I find that the more cycling I do the less insulin I need - regardless of what I eat. So, if I do (say) eight hours' cycling a week, I usually need no insulin at all for three or four days at a time.

I'd be surprised if what I've got is in fact 'pure' Type 2, as I'm not overweight and wasn't when I was diagnosed. However, perhaps there may be different variants of LADA? Anyway, I'll certainly discuss it with my medical team, as you suggest. Thanks again.


Best wishes,



Cliff
 
Hi and welcome.

This is an interesting situation. Can you tell us do you carb count and adjust your NR for what you are about to eat and then reduce that dose for when you are going to exercise afterwards within the 4-5 hours window that the NR is active? If you don't need any insulin and your levels are not going high without it, and you are having hypos during exercise with it, then it seems sensible not to take it.
I would however be surprised if Metformin or any other oral medication would be helpful and can in some cases bring unwanted side effects. Metformin works by improving insulin resistance which it sounds like you don't suffer from and it helps to reduce the glucose output from your liver, which, if you are not needing any basal (long acting insulin) then again, that is not a problem for you so no benefit but the risk of potential digestive upset which might stop or limit your cycling or make it challenging. Diarrhoea being a common side effect or metformin although it does usually wear off or settle down. Just can't see why it is worth the risk for no apparent benefit.

I am a little curious as to how your LADA diagnosis came about? Presumably you had the antibody tests and C-Peptide? Do you know what the results of those tests were? Were you very active at the time or has the cycling started to help you manage your BG levels? Your situation is rather unusual as most LADA see a slow steady progression from oral meds to needing insulin, rather than the other way around and needing almost no insulin after 8 years is pretty unusual too.
Do you have a half unit pen for your NR or just the disposable plastic FlexPen? If not, a half unit pen would certainly be helpful in your situation. Generally, early introduction of insulin with LADA helps to protect the remaining beta cells, so stopping altogether might be a concern in that sense, that it might make your remaining beta cells more vulnerable to further attack by your immune system, but maybe not. I just can't see how the action of Metformin would be beneficial in your case nor any of the other Type 2 meds, so maybe just having the insulin on hand to use as and when you need it, rather than using it daily.
Are you likely to be cycling or doing similar aerobic exercise right through the winter to help manage your levels?
Thanks very much for such a detailed reply. Yes, when I'm not doing much cycling the amount of NR I need for different types of food is predictable, so I can engineer a very 'flat' blood sugar profile across the 24 hours. When I'm actually cycling I use energy drinks, bars and gels to keep my blood sugar level at an appropriate level - just as any other serious cyclist does. It's after exercising that I end up needing far less insulin - with each three-hour cycling training session typically reducing or even eliminating my need for insulin for at least the next 24 hours.

My LADA was spotted by accident, thanks to my optician spotting a tiny retinal bleed. However, with hindsight I'd had typical symptoms (thirst, losing weight and tiredness) for about a year before that - and my blood sugar levels turned out to be sky high! I don't have the actual data to hand, though, I'm afraid. Insulin brought things under control very quickly, so I'm fairly confident that I do have some kind of LADA.

I wasn't doing as much cycling at the time I was diagnosed (2016) as at some other times in previous years. However, for the first half of 2019 I was doing lots of cycling and needed no insulin at all for a week at a time at some points. A few months ago I started serious cycling again and once more my need for insulin has dropped dramatically.

Yes, I've got half-unit cartridges - and yes, I'm planning to keep cycling! I'm semi-retired now, so I have more time for cycling (and recovery), thankfully.


Best wishes,



Cliff
 
I am in a similar situation as yours and was offered metformin last month (which I declined).
 
I am in a similar situation as yours and was offered metformin last month (which I declined).
That's interesting! Do you mean that you're LADA and on insulin? I'm surprised by what you say if that's the case, given what people above are saying about the alleged ineffectiveness of metformin with LADA.
 
That's interesting! Do you mean that you're LADA and on insulin? I'm surprised by what you say if that's the case, given what people above are saying about the alleged ineffectiveness of metformin with LADA.
I think one of the problems is that there has never been a definitive definition of the terms LADA and Type 1.5. This thread, linked below, has a discussion on the subject. My hospital gave up using the term, because it said it just led to confusion, as to whether a slow onset auto-immune diabetes was meant, or one of the subsets of diabetes where it’s more akin to a cross between Type 1 and Type 2, with some insulin resistance and some loss of beta cell function.

 
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Thanks very much for this. I note that that thread isn't accepting further replies. I wonder if there are various different sub-types of diabetes? Perhaps part of the problem is that the relevant sample sizes in LADA are so small: for example, how many other people are there specifically like me (no family history of diabetes, not overweight, sporty and diagnosed with LADA in his 50s - and eight years later still only needing a small amount of insulin to control blood sugar)? Also, of course, with those of us with LADA, we don't know the history in terms of how our bodies produced and/or reacted to insulin earlier in life - or how or why things started to go wrong later in life.
 
Exercise can affect BG levels for up to 48 hours thereafter - whether you have diabetes or not. Just that people without D never notice it cos they don't usually test it.
 
Exercise can affect BG levels for up to 48 hours thereafter - whether you have diabetes or not. Just that people without D never notice it cos they don't usually test it.
That's interesting! Before I developed LADA, my usual pattern after a hard cycling session would be that I wouldn't feel particularly hungry for the rest of the day - but would be ravenous the following day. Presumably my blood sugar would have been low overnight and my body would be trying to bring it back up to normal.
 
Sorry to be so nosey and ask lots of questions, but do you follow a relatively normal diet or did you change your diet after diagnosis and if so, in what way? Just wondering if a change of diet has had an impact on your insulin needs in some way?

Also wondering if there may have been some event which hampered your insulin production or spiked your BG levels for a while at diagnosis before things more or less settled down again, particularly if you haven't had antibody tests.... I am not clear if they did those tests or just assumed from your fitness etc that you must be LADA, We know that steroids can do that but maybe something else triggered a problem, but your body more or less recovered. Obviously your exercise will be helping reduce your insulin needs and generally we reduce our fast acting insulin for the meal before exercise and I find I need to reduce my long acting (basal) insulin for a couple of days afterwards and continue to reduce it for consecutive days of exercise.

Are you relying on Libre for readings or are you finger pricking to check any lows it reports? The reason I ask is that Libre tends to exaggerate lows for me, so it might say I am 3.5 when a finger prick (which is generally considered more reliable) will show me as 4.5. Also important to know that Libre suffers from what we call compression lows which can happen when you lie on the sensor arm. So again, you might be getting some false low readings if you have not been in the habit of double checking, particularly if you are not taking a long acting basal insulin which could cause your levels to drop overnight. It is normal for non diabetics to drop under 4 during the depths of sleep too, without any concern, because their liver has enough stored glucose to bring them back up.
 
Sorry to be so nosey and ask lots of questions, but do you follow a relatively normal diet or did you change your diet after diagnosis and if so, in what way? Just wondering if a change of diet has had an impact on your insulin needs in some way?

Also wondering if there may have been some event which hampered your insulin production or spiked your BG levels for a while at diagnosis before things more or less settled down again, particularly if you haven't had antibody tests.... I am not clear if they did those tests or just assumed from your fitness etc that you must be LADA, We know that steroids can do that but maybe something else triggered a problem, but your body more or less recovered. Obviously your exercise will be helping reduce your insulin needs and generally we reduce our fast acting insulin for the meal before exercise and I find I need to reduce my long acting (basal) insulin for a couple of days afterwards and continue to reduce it for consecutive days of exercise.

Are you relying on Libre for readings or are you finger pricking to check any lows it reports? The reason I ask is that Libre tends to exaggerate lows for me, so it might say I am 3.5 when a finger prick (which is generally considered more reliable) will show me as 4.5. Also important to know that Libre suffers from what we call compression lows which can happen when you lie on the sensor arm. So again, you might be getting some false low readings if you have not been in the habit of double checking, particularly if you are not taking a long acting basal insulin which could cause your levels to drop overnight. It is normal for non diabetics to drop under 4 during the depths of sleep too, without any concern, because their liver has enough stored glucose to bring them back up.
I've always eaten healthily, although since my diagnosis I'm more careful about eating a low-fat diet. It's clear that, for me, cycling has by far the biggest impact on my insulin needs, even more than what I eat. For example, I'll need at least 8 units of NovaRapid to counteract a big plate of spaghetti bolognese if I haven't cycled for a few days, whereas it will have no noticeable impact on my blood sugar if I've just done a hard three-hour ride, even if I take no insulin at all.

I've always wondered if stress could have been a factor: at the time of my diagnosis I was working long hours in a high-stress job. Having said that, it's only fairly recently (that is, several years after diagnosis) that I've started working less hard! As you can imagine, when I was diagnosed I did lots of thinking about whether or not there'd been any (medical or non-medical) event that could have caused my body to change relatively suddenly but nothing came to mind. I definitely had all the relevant tests at the time of diagnosis: there seems to be no doubt that I do have some form of LADA.

I do use finger pricking periodically to check my Libre, although not every day. I've got no reason to doubt my Libre readings, as they follow a consistent pattern.

Certainly, before I was diagnosed, if I did a hard cycle ride and went to bed without eating a big dinner, I'd sometimes wake up in the night and feel the need to get up and eat a piece of chocolate! So, as you say, I'm sure that hard exercise can lead to the equivalent of hypos in non-diabetics for some time after cessation of the episode of exercise.
 
Thanks very much for this. I note that that thread isn't accepting further replies. I wonder if there are various different sub-types of diabetes? Perhaps part of the problem is that the relevant sample sizes in LADA are so small: for example, how many other people are there specifically like me (no family history of diabetes, not overweight, sporty and diagnosed with LADA in his 50s - and eight years later still only needing a small amount of insulin to control blood sugar)? Also, of course, with those of us with LADA, we don't know the history in terms of how our bodies produced and/or reacted to insulin earlier in life - or how or why things started to go wrong later in life.

It’s impossible to answer your question about how many people with LADA are like you @CliffH because of the vagueness of the term LADA. My consultant rarely uses it. If she had someone diagnosed with Type 1 diabetes in their 50s, she’d simply call them Type 1.

However, as mentioned above, there is a form of diabetes that seems to straddle Type 1 and Type 2. This is what she calls Type 1.5 - but as you see here, some people think late-onset Type 1 is the same thing as Type 1.5!

All I can say is that Type 1 tends to come on more slowly in older adults. I know somebody who developed it at 50, was initially thought to be Type 2, but then 8-10 years later was diagnosed as Type 1. Have you had C Peptide tests done to see how much of your own insulin you’re making?

As @rebrascora asks, what would be an average day’s food for you?
 
It’s impossible to answer your question about how many people with LADA are like you @CliffH because of the vagueness of the term LADA. My consultant rarely uses it. If she had someone diagnosed with Type 1 diabetes in their 50s, she’d simply call them Type 1.

However, as mentioned above, there is a form of diabetes that seems to straddle Type 1 and Type 2. This is what she calls Type 1.5 - but as you see here, some people think late-onset Type 1 is the same thing as Type 1.5!

All I can say is that Type 1 tends to come on more slowly in older adults. I know somebody who developed it at 50, was initially thought to be Type 2, but then 8-10 years later was diagnosed as Type 1. Have you had C Peptide tests done to see how much of your own insulin you’re making?

As @rebrascora asks, what would be an average day’s food for you?
I don't know if I've had C Peptide tests done: I expect I have, as I live in Scotland now, where diabetes care seems much more thorough than it is in England (which is where I was living when I was diagnosed). However, I had my annual screening check on Tuesday (hence me joining this Forum now!), so I'll see what's in my Consultant's letter when it arrives in a few weeks' time.

For breakfast I have a big (and I mean big!) bowl of (fruit & nut, with no added sugar) muesli, with low-fat soya milk. Assuming that I'm not out cycling, I usually have sushi and a banana for lunch. For dinner I have a 'normal' meal (it could pasta-based or rice-based or meat with potatoes) - albeit a big portion. I try not to snack between meals: if I do, it's usually a handful of nuts and raisins mix. So, a 'normal' healthy diet. If I'm cycling, i use proprietary energy drinks, bars and gels, to address my hydration and nutrition requirements whilst actually on the bike. Straight after a long ride, I have a recovery shake (protein and carb mix).
 
I don't know if I've had C Peptide tests done: I expect I have, as I live in Scotland now, where diabetes care seems much more thorough than it is in England (which is where I was living when I was diagnosed). However, I had my annual screening check on Tuesday (hence me joining this Forum now!), so I'll see what's in my Consultant's letter when it arrives in a few weeks' time.

For breakfast I have a big (and I mean big!) bowl of (fruit & nut, with no added sugar) muesli, with low-fat soya milk. Assuming that I'm not out cycling, I usually have sushi and a banana for lunch. For dinner I have a 'normal' meal (it could pasta-based or rice-based or meat with potatoes) - albeit a big portion. I try not to snack between meals: if I do, it's usually a handful of nuts and raisins mix. So, a 'normal' healthy diet. If I'm cycling, i use proprietary energy drinks, bars and gels, to address my hydration and nutrition requirements whilst actually on the bike. Straight after a long ride, I have a recovery shake (protein and carb mix).
I am amazed that you can be eating such a high carbohydrate diet and yet needing so little insulin. It doesn't sound as if you are counting your carbs to adjust your insulin dose. I wonder if you are actually diabetic at all.
Some others may have more idea though.
 
That's interesting! Do you mean that you're LADA and on insulin? I'm surprised by what you say if that's the case, given what people above are saying about the alleged ineffectiveness of metformin with LADA.

No, I am not on insulin, according to UKPDS two out of three older patients with a diagnosis of LADA will not need insulin within 6 years.

Metformin increases GLP-1 secretion (which means it is effective in LADA), but unfortunately it also does this:

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I note that that thread isn't accepting further replies. I wonder if there are various different sub-types of diabetes?

All our threads auto-lock after they have been dormant with no new activity for 3 months.

I’ve unlocked that thread for you in case you wanted to add any comments @CliffH


@Robin - you had somehow grabbed a ‘post’ link. For the start of the thread you would need to grab the thread web address from your browser, and then remove the numbers after the # (which is an ‘anchor’ directing the browser to a specific post on the page). I accept this is probably gibberish to most people.
 
No, I am not on insulin, according to UKPDS two out of three older patients with a diagnosis of LADA will not need insulin within 6 years

UK PDS is a study primarily of T2 diabetes. It’s findings were specifically excluded from development of the T1 Guideline I was involved in.

This is a summary from 2008 (my emphasis):

Latent autoimmune diabetes in adults (LADA) is characterised by a relatively mild diabetes onset, autoantibody positivity and eventual requirement for insulin therapy. Twelve per cent of newly diagnosed, UK Prospective Diabetes Study (UKPDS) patients were positive for autoantibodies to GAD65 (GADA) and/or insulinoma-associated antigen-2A (IA-2A) and managed as if they had Type 2 diabetes according to the UKPDS protocol. Here, we compare data from UKPDS LADA patients with that from other cohorts. In common with other groups, UKPDS LADA patients required insulin therapy earlier post-diagnosis than non-LADA patients. Reduction of islet function was similar in UKPDS LADA groups randomised to oral glucose-lowering agents or insulin replacement therapy, contesting the current hypothesis of reduced decline of insulin secretion in LADA by immediate insulin therapy. Disease progression was not predicted by post-diagnosis GADA levels or epitope specificities as has been suggested. Slowly progressing insulitis and pancreatic beta-cell loss at post-mortem are consistent with sustained retention of residual C-peptide secretion in LADA. Genetic association patterns at the human leucocyte antigen (HLA) and insulin gene (INS) regions are similar in UKPDS LADA patients and individuals with adult and childhood-onset Type 1 diabetes. The combined evidence suggests that LADA is an adult-onset form of Type 1 diabetes, rather than a separate condition or an intermediate state in a continuum of phenotype from Type 1 to Type 2 diabetes.​
Edited to add study link: https://pubmed.ncbi.nlm.nih.gov/18717976/

I can’t find a reference to a majority of people with LADA in UKPDS coming off insulin. It talks about progressive autoimmune beta cell loss, and insulin being more required over time?
 
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All our threads auto-lock after they have been dormant with no new activity for 3 months.

I’ve unlocked that thread for you in case you wanted to add any comments @CliffH


@Robin - you had somehow grabbed a ‘post’ link. For the start of the thread you would need to grab the thread web address from your browser, and then remove the numbers after the # (which is an ‘anchor’ directing the browser to a specific post on the page). I accept this is probably gibberish to most people.
Great: thanks very much.
 
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