Metformin to treat LADA?

[NoopNoop]

Hi, since my diagnosis in June, I've read loads of books and am finding my very limited interactions with my consultant or DSN very unhelpful. I've read in several books and in medical journals about using metformin to treat early LADA. Also, I'm been eating very low carb which has meant that I haven't needed to Inject insulin for a while and I've had BG in 4-7 range almost 100% of the time. I told my DSN this and was dismissed as she considers my range to be 4 - 10, so thinks everything's fine. Now insulin is no longer on my prescription. GP always defers to the DSN, who has dismissed requests for insulin in half - unit pens (so I can have tighter control) saying I'm low carb so don't need it. This has now trapped me in my diet with no leeway for experimenting unless I want high BG. Very frustrating. She just bats requests away and says I need to speak to the consultant because she can't answer my questions. I have to wait until December or January before I am due an appointment. I feel a bit stuck.

Also, besides all this, about 10 days ago, my BG has been elevated. Gone from TIR (4 - 7) of 100% to 44%. I know this is a tight range and I'm not about to go blind, but I really do want to have as close to normal BG as possible. I've had it for a couple of months now, it is possible with some effort. After getting nowhere with my medical "team", I just started taking abasaglar again as I still have some pens left in the fridge. It seems to have helped bring BG back into range, but I'm really frustrated with the lack of flexibility I have. I would like to be able to decide day to day what I want to eat and have the freedom to be able to manage that if I decide to eat a higher carb meal either once in a while or to chop and change my diet as I see for, without having to wait until December or January to be able to talk to my consultant and try and agree a series of action plans so I can get appropriate prescriptions. I want to have a serious discussion about using metformin and be able to try it. My GPs are great and really listen, but I'm too niche and they're too scared to mess up so they point me elsewhere and I don't feel like I'm getting anywhere. My DSN advises against my diet and doesn't seem to know anything at all about very low carb diets and doesn't seem to be open to facilitating my experimentation with diet or metformin. Has anyone got any nuggets of wisdom or suggestions to go forward? Does anyone have experience of consultants and teams that are supportive of very low carb? Metformin for LADA? I've been warned about the diabetes team in Cornwall not being particularly helpful unless you're in crisis and want to follow the NICE guidelines perfectly. Which I'm not and I don't.

 

[searley]

If you are LADA insulin should remain available as you will need it at some point so keep an eye on things

I don’t take metformin as I can’t tolerate it, but I do know t1 and lada that do and it helps with their general control..

But in lada you insulin production is failing albeit slowly, so metformin may help short term but longer term insulin will be required

A few month of higher bg will be ok not going to do massive harm, but you’ll have to go that way to get insulin reissued unless you team listen to common sense

 

[Rachox]

This member @Antje77 has LADA and I think has tried Metformin, not sure if they are still on it but hopefully they’ll have some words of wisdom.
I’ve tagged them so they should see this post.

 

[Antje77]

Hi @NoopNoop , I think your approach is very sensible.

I did try metformin for a while (on top of my insulin) but it didn't do much for me and I stopped after 8 months. Which doesn't say anything about if it will be helpful for you, it may well be or it may not.

You're not getting insulin prescribed now because you're very low carb and at the moment don't really need it, right?
And your DSN doesn't agree with your low carb way of eating, right?

What about telling her you wish to follow her advice on incorporating a bit more carbs in your diet and you'll need the insulin to be able to follow her advice?

Not technically untrue if you want to be able to do some experimenting either.

 

[NoopNoop]

Hi @NoopNoop , I think your approach is very sensible.

I did try metformin for a while (on top of my insulin) but it didn't do much for me and I stopped after 8 months. Which doesn't say anything about if it will be helpful for you, it may well be or it may not.

You're not getting insulin prescribed now because you're very low carb and at the moment don't really need it, right?
And your DSN doesn't agree with your low carb way of eating, right?

What about telling her you wish to follow her advice on incorporating a bit more carbs in your diet and you'll need the insulin to be able to follow her advice?

Not technically untrue if you want to be able to do some experimenting either.

Yes, I have said to her that I want to try different diets and would like insulin in half units so I have more control. She seems to not be able to hear me. Just says I'm in range ( much wider range than I'm aiming for) and I'll see the consultant in December or January. Bats it away. I ideally would also like c peptide tests at regular intervals to be able to track the decline of my beta cells. The only one I've had was on the first day I went in, so wasn't a fasting one so might not be as useful as a benchmark. When I asked my doc for one, he seemed keen but passed it onto the DSN, who said I couldn't have one. So many things I'm reading about LADA highlights the importance of regular c peptide and also treating with metformin in early days. Are any consultants likely to support this? Does anyone know how or have any recommendations for going private? Or just paying for these blood tests?

 

[Speedbird]

Yes, I have said to her that I want to try different diets and would like insulin in half units so I have more control. She seems to not be able to hear me. Just says I'm in range ( much wider range than I'm aiming for) and I'll see the consultant in December or January. Bats it away. I ideally would also like c peptide tests at regular intervals to be able to track the decline of my beta cells. The only one I've had was on the first day I went in, so wasn't a fasting one so might not be as useful as a benchmark. When I asked my doc for one, he seemed keen but passed it onto the DSN, who said I couldn't have one. So many things I'm reading about LADA highlights the importance of regular c peptide and also treating with metformin in early days. Are any consultants likely to support this? Does anyone know how or have any recommendations for going private? Or just paying for these blood tests?

Hi NoopNoop.
I’ve sent you a private message.

 

[WhippetyGirl]

I was initially diagnosed as Type 2 (at 32, no weight issues) but my team increasingly suspected LADA. After developing Gastroparesis and Autonomic Neuropathy, I was referred to a specialist centre. I did a lot of research and the reference point seems to be 'Management of Latent Autoimmune Diabetes in Adults: A Consensus Statement From an International Expert Panel' (https://diabetesjournals.org/diabet...ement-of-Latent-Autoimmune-Diabetes-in-Adults). This gives diagnostic and treatment algorithms.

After a C-peptide and glucose test, I was diagnosed yesterday as Type 1 despite the absence of GAD antibodies.

Feeling a little bewildered as it's been a bit of a roller coaster ride

 

[Antje77]

I ideally would also like c peptide tests at regular intervals to be able to track the decline of my beta cells.

For what it's worth, I had one C-peptide test years ago (tested as just below low normal) but I've never seen the use of repeated tests.
Insulin doses are based on blood glucose, not on the amount of insulin you produce, knowing how much you produce doesn't change treatment.

 

[NoopNoop]

I was initially diagnosed as Type 2 (at 32, no weight issues) but my team increasingly suspected LADA. After developing Gastroparesis and Autonomic Neuropathy, I was referred to a specialist centre. I did a lot of research and the reference point seems to be 'Management of Latent Autoimmune Diabetes in Adults: A Consensus Statement From an International Expert Panel' (https://diabetesjournals.org/diabet...ement-of-Latent-Autoimmune-Diabetes-in-Adults). This gives diagnostic and treatment algorithms.

After a C-peptide and glucose test, I was diagnosed yesterday as Type 1 despite the absence of GAD antibodies.

Feeling a little bewildered as it's been a bit of a roller coaster ride

It sure is a rollercoaster! I hope you're ok. How do you feel about your diagnosis?

 

[NoopNoop]

For what it's worth, I had one C-peptide test years ago (tested as just below low normal) but I've never seen the use of repeated tests.
Insulin doses are based on blood glucose, not on the amount of insulin you produce, knowing how much you produce doesn't change treatment.

You're right about insulin doses and blood glucose. An International panel of diabetes experts, as whippetygirl linked above, came together to discuss a way of dealing with LADA and they concluded that based on c peptide levels, different approaches could be taken for treatment. For people with more insulin production, metformin could be used. For people with less of their own insulin, then supplementing with additional insulin would be suitable. Their suggestion was to regularly test c peptide levels so that the beta cell decline could be monitored to help inform when a change in approach would be needed.

 

[Honeyblossom]

Hi, since my diagnosis in June, I've read loads of books and am finding my very limited interactions with my consultant or DSN very unhelpful. I've read in several books and in medical journals about using metformin to treat early LADA. Also, I'm been eating very low carb which has meant that I haven't needed to Inject insulin for a while and I've had BG in 4-7 range almost 100% of the time. I told my DSN this and was dismissed as she considers my range to be 4 - 10, so thinks everything's fine. Now insulin is no longer on my prescription. GP always defers to the DSN, who has dismissed requests for insulin in half - unit pens (so I can have tighter control) saying I'm low carb so don't need it. This has now trapped me in my diet with no leeway for experimenting unless I want high BG. Very frustrating. She just bats requests away and says I need to speak to the consultant because she can't answer my questions. I have to wait until December or January before I am due an appointment. I feel a bit stuck.

Also, besides all this, about 10 days ago, my BG has been elevated. Gone from TIR (4 - 7) of 100% to 44%. I know this is a tight range and I'm not about to go blind, but I really do want to have as close to normal BG as possible. I've had it for a couple of months now, it is possible with some effort. After getting nowhere with my medical "team", I just started taking abasaglar again as I still have some pens left in the fridge. It seems to have helped bring BG back into range, but I'm really frustrated with the lack of flexibility I have. I would like to be able to decide day to day what I want to eat and have the freedom to be able to manage that if I decide to eat a higher carb meal either once in a while or to chop and change my diet as I see for, without having to wait until December or January to be able to talk to my consultant and try and agree a series of action plans so I can get appropriate prescriptions. I want to have a serious discussion about using metformin and be able to try it. My GPs are great and really listen, but I'm too niche and they're too scared to mess up so they point me elsewhere and I don't feel like I'm getting anywhere. My DSN advises against my diet and doesn't seem to know anything at all about very low carb diets and doesn't seem to be open to facilitating my experimentation with diet or metformin. Has anyone got any nuggets of wisdom or suggestions to go forward? Does anyone have experience of consultants and teams that are supportive of very low carb? Metformin for LADA? I've been warned about the diabetes team in Cornwall not being particularly helpful unless you're in crisis and want to follow the NICE guidelines perfectly. Which I'm not and I don't.

Hi NoopNoop,
I have been in a similar position to you. When you low carb no one believes there is a problem with your diabetes!
Because of this I no longer vlc but stay well under the guidelines and advice of diabetes uk and my glucose levels are running way too high. I take Humulin I which helps but doesn't control my meal time needs and I was advised by the consultant to take as much metformin as I can tolerate. I manage 500mg MR twice a day but if I'm honest I'm not sure it does a lot. I too have a wait until my hospital appt and my GP surgery wants me to wait for that for further advice. I hope you don't have to wait too long, it's so frustrating isn't it?

 

[NoopNoop]

Hi NoopNoop,
I have been in a similar position to you. When you low carb no one believes there is a problem with your diabetes!
Because of this I no longer vlc but stay well under the guidelines and advice of diabetes uk and my glucose levels are running way too high. I take Humulin I which helps but doesn't control my meal time needs and I was advised by the consultant to take as much metformin as I can tolerate. I manage 500mg MR twice a day but if I'm honest I'm not sure it does a lot. I too have a wait until my hospital appt and my GP surgery wants me to wait for that for further advice. I hope you don't have to wait too long, it's so frustrating isn't it?

SO frustrating! I've written a stern email to my consultant, using loads of their terms found in various documents, detailing how they're failing to deliver personalized care and not meeting their standards etc etc. From these documents if you're interested:

NHS England » Personalised care

NHS England » Personalised care

www.england.nhs.uk

NHS England » Decision support tools

Decision support tools, also called patient decision aids, support shared decision making by making treatment, care and support options explicit. They provide evidence-based information about the associated benefits/harms and help patients to consider what matters most to them in relation to the...

www.england.nhs.uk

I'm going to give him a chance to respond, but then I'm finding another consultant! Someone on here very kindly shared details of someone who seems very supportive of the way I want to manage things. It's such a a lottery isn't it! So surprising how little my DSN knows about LADA. The more I learn about it, there are just so many things that completely contradict what she told me. I guess because there aren't proper NICE guidelines to cover it yet.

 

[Honeyblossom]

SO frustrating! I've written a stern email to my consultant, using loads of their terms found in various documents, detailing how they're failing to deliver personalized care and not meeting their standards etc etc. From these documents if you're interested:

NHS England » Personalised care

NHS England » Personalised care

www.england.nhs.uk

NHS England » Decision support tools

Decision support tools, also called patient decision aids, support shared decision making by making treatment, care and support options explicit. They provide evidence-based information about the associated benefits/harms and help patients to consider what matters most to them in relation to the...

www.england.nhs.uk

I'm going to give him a chance to respond, but then I'm finding another consultant! Someone on here very kindly shared details of someone who seems very supportive of the way I want to manage things. It's such a a lottery isn't it! So surprising how little my DSN knows about LADA. The more I learn about it, there are just so many things that completely contradict what she told me. I guess because there aren't proper NICE guidelines to cover it yet.

Thanks for the docs NoopNoop. I hope you find someone who can understand your cause. I'm due my next appointment soon so hopefully I will be able to address some of my concerns then. Keep us posted!

 

[WhippetyGirl]

It sure is a rollercoaster! I hope you're ok. How do you feel about your diagnosis?

To be honest, partly relieved but pretty angry too. I can't help but wonder (although it won't do me any good) if I'd been diagnosed correctly, could I have prevented developing the health conditions that have so drastically changed my life.

Anyway, I now have a great team supporting me and I'm lined up for a DAFNE course in February followed up with a move to a pump afterwards. Hopefully, I can now move forward with the right care and support.
Debs x

 

[Alexandra100]

Does anyone know how or have any recommendations for going private? Or just paying for these blood tests?

Private C peptide tests, in my experience, are a bit far and few. I did manage to nag my GP into sending me for one on the NHS, but after my blood had been taken the highups vetoed the test. (I still feel indignant about my blood being taken and then thrown away.) After that I paid for a private test. Not only did it cost me well over £100, but although I live in a large city I had to travel an hour on the train to another city (plus taxi). Nowadays I see there are several options where I live. The cheapest costs £100 for the C peptide test plus blood glucose test that you need with it. A home blood draw is not possible with a C peptide test.

Just Google "C peptide test private XXX (name of your area)".

Good luck!

 

[Daibell]

Hi. Metformin is unlikely to help much with LADA and not worth taking with insulin. The important thing is to focus on how you use and dose with the Basal & Bolus. GPs and consultants don't really like doing C-Peptide tests. The blood one requires the tube to be kept cold etc and one I had was 'lost' by the lab. The urine one is completely different and I don't trust the result so much. There are very few places that do private tests but outside of London Spire group hospitals offer them. My reason for wanting a further C-Peptide test is that I'm still listed as T2 which I'm unhappy with (LADA had no validity in the NHS). My earlier C-Peptide showed my result just outside the T1 range and as I now use more and more insulin I suspect I would now be in the T1 range.

 

[Alexandra100]

Hi. Metformin is unlikely to help much with LADA

Nowadays metformin is more & more prescribed for T1s. I think part of the reason is that metformin is thought to help reduce insulin resistance, and many T1s (especially older ones) do have this. I take metformin(alongside a severely low carb diet) on the principle that any little helps.

 

[EllieM]

Hi. Metformin is unlikely to help much with LADA and not worth taking with insulin.

I'm not sure these studies and reports agree (although to be fair they specify T1 rather than LADA)

Here it's good for heart issues
https://link.springer.com/article/10.1007/s00125-017-4364-6

This study says it is good, but only 65 people

Metformin improves glycemic variability in adults with type 1 diabetes mellitus: an open-label randomized control trial

Introduction Metformin has been demonstrated to enhance cardioprotective benefits in type 1 diabetes (T1DM). Although glycemic variability (GV) is associated with increased risk of CVD in diabetes, there is a scarcity of research evaluating the effect of metformin on GV in T1DM. Objectives In...

ec.bioscientifica.com

and this is an interesting article on the subject

https://diatribe.org/diabetes-medications/does-metformin-benefit-people-type-1-diabetes

 

[searley]

I know T1/lada’s on metformin and they were given it because insulin alone was not giving good control

And since having metformin their control has been much better

But of course can not be used as the only medication

 

[Melgar]

@Daibell , my brother is LADA/T1 and takes Metformin to increase insulin sensitivity.