Metformin, LADA confused.

[Crumblebee]

Hi I don't know why but I feel ashamed to be diabetic like it's my own fault for not taking care of myself, I was diagnosed as type 2 in 2020 I was 33, and was put on Metformin. My bloods got better for a short amount of time but my overall health deteriorated, and eventually my bloods climbed high again and symptoms of thirst etc started again.
Anyway I was at a nurse appointment for blood tests and I just broke down, I was so weak. I told her about how I was unable to eat meals from nausea, and vomiting, I wasn't able to go to the bathroom and when I did it wasn't normal, I told her about my breathlessness, dizziness, migraines, chest palpitations, and more, and she was so worried she messaged my Dr and I don't know what she told them but it prompted them to authorise the type one test at my GP as covid restrictions.
So finally got my results, surprise type one, apparently they said to me I have 3 types of antibodies, and that means I'm type one.
Started insulin and bam I ate a sandwich in less than 24hrs from taking it. It was the best sandwich ever, after not being able to eat meals for months it was wonderful.
Anyway during this time I kept on taking Metformin, but I was told earlier this year to stop taking it as I'm type one it's not needed. So I did. After a few weeks I noticed my bloods being erratic, and hard to control extreme highs and lows but rarely in-between.
My last appointment I explained what was happening and from the libry they could see my problem. So they decided to put me back on Metformin. Just been on it for over a week and my bloods are staying in the green… I'm 70-90% in range.
But my brain keeps confusing me, Metformin is a type 2 drug, but I'm type one because antibodies, but it's helping me, I'm not going to stop Metformin because I feel better taking it, as bloods not being in range was horrible and made me feel very off.
I just feel like I'm not type 1 or type 2, I feel so confused, I like having the ability to tell people what I have to help them not "judge" and do the whole "should you eat that?, Can you eat that?" questions. I don't know I just feel like it's my fault for being diabetic and I should of known or something. If you have read this far thank you for listening, I'm so alone in this and it's scary.
I just hope that someone else is on Metformin and can relate maybe?

 

[SB2015]

Good morning @Crumblebee

Thank you for sharing your, all too common, tale of misdiagnosis. I am glad that they did the antibody test and have found that you are T1. Metformin is prescribed for some T1s so Don’t worry about that. If it is working for you then that is great. We all have to find what works for us, and then tweak things as we go along.

T1 is an autoimmune disease. There is absolutely nothing you could have done to prevent this. Once those antibodies had got going, destroying your beta cells, they were going to continue until their job was complete. So eventually our bodies don’t have enough insulin and the few cells left just go on strike. This can take quite a while, and diagnosis is often triggered by our body needing additional insulin for example during a bout of illness.

You are not alone and there is loads of experience to tap into on here. Just ask.

 

[rebrascora]

Hi.

So pleased you now have a correct diagnosis and the insulin is making you feel better and you are now able to enjoy feed again and nourish your body. Many of us were misdiagnosd Type 2...... some people for many years and it does cause emotional turmoil. Like you, I felt guilty and embarrassed at my diagnosis. This is because society and in many instances, the medical profession, do not fully understand diabetes which is a very complex condition. I used those feelings to help me take control of my diabetes and manage it to the best of my ability.
I am pleased that you feel the Metformin is helping and the way in which it may be helping you is to reduce the amount of glucose your liver releases. I think it may be that your basal insulin needs increased (this insulin is used to deal with the liver's output of glucose) and if my basal insulin doses are not correct, my diabetes becomes unstable and my levels go up and down. This happens quite regularly for me and I am gradually learning to adjust my basal insulin as soon as I start to feel frustrated with my levels. The Metformin solution will likely not last forever in dealing with this problem as your insulin producing beta cells gradually die off, but you will hopefully learn to adjust your basal insulin doses to overcome the problem. It is important to know that BG levels go through spells like this from time to time and to develop strategies to deal with it. Getting an intensive education course like DAFNE (Dose Adjustment For Normal Eating) will also help to give you a framework to identify when things need tweaking and how much to adjust it by. It is also really helpful to spend time with other Type 1 diabetics so if you get the chance of an in person course like that, I would urge you to take it as it is really worthwhile.
There is no doubt about your diagnosis and finding a benefit from Metformin does not make you Type 2 and there are supposedly other heart health benefits to taking Metformin so I really wouldn't worry about it unless it is upsetting your stomach.

As regards LADA..... this term is generally applied to Type 1 diabetics who find their diabetes onset more gentle (usually doesn't involve an emergency admission to hospital with DKA) and it may be that they can manage it for many months or even years reasonably well through diet, exercise and perhaps oral meds but there is a more gradual increase in levels (or occasionally a sudden increase) and eventually they need insulin despite their best efforts to manage it well. I am not sure of the timescales involved in your body reaching crisis point and needing insulin but that doesn't mean you aren't Type 1 and a LADA diagnosis doesn't mean you are both Type 1 and Type 2 although it is possible to be both if Type 1s put on a lot of weight and develop significant insulin resistance and start to need very high doses.

I hope that addresses some of your confusion but if not, then if you can explain exactly what part of it you are confused about, we can try to address it, but don't worry about the Metformin if you are finding a benefit in taking it and you aren't suffering the usual side effects 🙄 with it.

 

[everydayupsanddowns]

Welcome to the forum @Crumblebee

Sorry to hear that you are feeling some shame and stigma around your diabetes. This is perfectly understandable because of the misleadingly simplistic (and often stigmatising) way that diabetes is presented in the media, and regrettably by some HCPs too.

In reality diabetes is an incredibly complex and nuanced range of conditions. Recent attempts to fully understand this complexity have discerned anything from 7 to over 70 sub-types, whereas for the general public 2 are about as many as most people will have heard of! There are autoimmune types which cannot be avpided however virtuously a person may have been living, and for T2 (which is the usual brunt of the stigma) research increasingly shows a very strong genetic component, where people can be living the same as their peers, or ‘more healthily’ but those with dodgy genes will develop T2 where their peers never would however much weight they gained.

Add to that media reporting about ‘burden on the NHS’, ‘proportion of the budget’, ‘lifestyle condition’, accompanied by blurry highstreet shots of wobbling torsos, and blame, guilt and stigma are being heaped on you in spades.

I am very pleased that Diabetes UK now has a reduction of this stigma as a focus for some of its work over the next 5 years, and really hope significant progress can be made.

And don’t worry about the labelling of meds as one thing or another. Plenty of folks with T1 take Metformin, and lots of T2s dont - it’s much more important whether or not it’s a useful part of your diabetes toolkit. 🙂

 

[Spathiphyllum]

... So finally got my results, surprise type one, apparently they said to me I have 3 types of antibodies, and that means I'm type one.
Started insulin ... during this time I kept on taking Metformin, but I was told earlier this year to stop taking it as I'm type one it's not needed. So I did. After a few weeks I noticed my bloods being erratic, and hard to control extreme highs and lows but rarely in-between.
My last appointment I explained what was happening and from the libry they could see my problem. So they decided to put me back on Metformin. Just been on it for over a week and my bloods are staying in the green… I'm 70-90% in range.
But my brain keeps confusing me, Metformin is a type 2 drug, but I'm type one because antibodies, but it's helping me, I'm not going to stop Metformin because I feel better taking it, as bloods not being in range was horrible and made me feel very off.
I just feel like I'm not type 1 or type 2, I feel so confused, I like having the ability to tell people what I have to help them not "judge" and do the whole "should you eat that?, Can you eat that?" questions. I don't know I just feel like it's my fault for being diabetic and I should of known or something. ...

As others have explained: Type 1 is an autoimmune disease; your own immune system decides to attack your 'beta cells', the insulin-producing cells in your pancreas, and you end up with your body unable to produce enough, or any, insulin. Type 1 has nothing to do with 'lifestyle factors'.

Type 2 is primarily about 'insulin resistance': your body's cells resist the insulin you've got, rather than using it effectively. Type 2 usually involves a genetic susceptibility but is triggered by excess visceral fat-- fat deep inside your tummy, especially around your liver. You can have excess visceral fat even if you have a normal BMI-- that can happen if you are very sedentary-- but you're far more likely to have excess visceral fat if you are overweight.

Because Type 1 and Type 2 have completely different causes, there is no reason why someone couldn't have both! Just like there is no reason you couldn't have Type 2 and then develop another autoimmune disease, like lupus.

Metformin works by reducing insulin resistance, giving your body something more like a normal sensitivity to insulin again. So, if it is helping you, it looks like you do have Type 2; and, given the results of your autoantibody tests, you definitely also have Type 1.

Regarding "fault" ... Type 2 is triggered by 'lifestyle factors' leading to excess visceral fat, and Type 2 can be managed or even reversed by changing your diet, losing weight, and taking up exercise. Firstly, you are not at fault for not having known these facts: they have only been firmly confirmed by research in recent years. (In particular, recent research supported by Diabetes UK: see for example https://www.diabetes.org.uk/about_u...iet-to-help-people-with-type-2-into-remission )

Secondly: There are three ways of looking at those facts. One is to say 'Oh no! it's my fault!' and beat yourself up about it. Another is to say 'You're saying it's my fault! How dare you, you horrible person!' And the third is to say 'I didn't know this; now that I do know it, I feel much more hopeful! There is something I can do about it!'

Lots of people on this forum who have, or have had, Type 2 have gone for the third option, and have succeeded in changing their diet and exercise habits and getting off Type 2 medications or even reversing their Type 2.

Of course that involves a lot of work! Changing habits is hard; if you can't do that, or can't do that just yet, don't beat yourself up.

It's like smoking. Smokers aren't weak or stupid! The problem is that the particular combination of nicotine and other chemicals in tobacco smoke is just about the most addictive thing there is. Stigmatising and blaming smokers doesn't help them give up; and smokers beating themselves up doesn't help either. But on the other hand it would also not help if we just told smokers 'it's your genes'-- even though genes play a big role in whether, and how badly, people become addicted to smoking. (See for example https://erj.ersjournals.com/content/33/3/468 )

What does help smokers quit is support from people who understand the problem-- which is why we have NHS programmes to help smokers quit. For Type 2, now that we know it can be managed or even reversed by losing enough weight and taking up exercise, the NHS now has programmes specifically for people with Type 2 to help them do that. The current programmes are targeted at people who are overweight, so are focused on weight loss and then introducing exercise; if you're not overweight, taking up exercise is the key thing, to reduce insulin resistance.

Just keep in mind that, although there's nothing you can do to reverse Type 1, there is something you can do about Type 2, if and when you feel able to have a go. In the meantime-- be kind to yourself, and focus on getting some stability where you are now. All the best!

 

[harbottle]

As others have explained: Type 1 is an autoimmune disease; your own immune system decides to attack your 'beta cells', the insulin-producing cells in your pancreas, and you end up with your body unable to produce enough, or any, insulin. Type 1 has nothing to do with 'lifestyle factors'.

Type 2 is primarily about 'insulin resistance': your body's cells resist the insulin you've got, rather than using it effectively. Type 2 usually involves a genetic susceptibility but is triggered by excess visceral fat-- fat deep inside your tummy, especially around your liver. You can have excess visceral fat even if you have a normal BMI-- that can happen if you are very sedentary-- but you're far more likely to have excess visceral fat if you are overweight.

Because Type 1 and Type 2 have completely different causes, there is no reason why someone couldn't have both! Just like there is no reason you couldn't have Type 2 and then develop another autoimmune disease, like lupus.

You can't have them both.

Type 2 diabetes is a different condition.

You are confusing insulin resistance with type 2 diabetes. You can be Type 1 and have insulin resistance. You can be non-diabetic and have insulin resistance.

 

[EmmaL76]

Hi I havnt got much to add as you have been given some pretty good information. I can relate, my diagnosis has changed a few times and apparently i fall into a grey area that nobody fully understands. I totally get the explaining to others thing, I’m skinny, always have been. I was a runner when diagnosed type 2 initially and people would laugh and say well of all the people, and comment things like you can’t be that healthy! I’m treated as a LADA at the moment due to antibodies. I was diagnosed initially over the phone and was told I must be fat on the inside and told to lose weight, which left me in a physical and mental mess. There is a drastic difference in the way I was spoken to by health professionals depending on my title at that time, it’s unacceptable that we are made to feel this way. Even my family make jokes but it’s starting to grate on me. There is now talk of switching me back to a type 2 but I am now at peace with it. Whatever I am, it ruined me for a while but I’m much stronger now because of it, and if someone wants to stigmatise me because of it, then so be it… don’t need those people in my life anyhow.
Oh and by the way, my uncle was diagnosed type 1 20 odd years ago and has been on metformin the whole time along with his insulin. I’m sorry if my post comes across a bit angsty (is that a word?) but It struck a chord with me…that feeling that your illness is your fault, and worried about judgement. We are warriors and don’t forget it 😉

 

[Spathiphyllum]

You can't have them both.

Type 2 diabetes is a different condition.

You are confusing insulin resistance with type 2 diabetes. You can be Type 1 and have insulin resistance. You can be non-diabetic and have insulin resistance.

Crumblebee's health condition can be described as having both Type 1 and Type 2, or having Type 1 plus insulin resistance, or having Type 2 leading to autoimmunity, or having "double diabetes" or "hybrid diabetes": see for example https://www.nature.com/articles/s41387-019-0101-1 .

But the label really doesn't matter! All of those labels are describing the same thing, and the treatment implications are the same whatever the label.

Or, correction-- as others have pointed out previously, a diagnosis of T1 may enable you to get more things on the NHS. So describing it as either Type 1 plus Type 2 or Type 1 plus insulin resistance may be more useful in tactical terms.

And, Crumblebee: if you follow the link above, or just search for 'double diabetes', you will see you are definitely not "alone in this"!

 

[rebrascora]

You can't have them both.

Why not? Why does one preclude the other?


@Crumblebee Can I ask how much insulin you are using.... just roughly? If your doses are relatively small then it is unlikely to be Type 2 and either coincidence that the Metformin appeared to help and you were just going through an unstable patch.... which happens with Type 1 from time to time. Certainly in the first few months/years when the honeymoon period is impacting things you can go through periods of upheaval as more beta cells are slowly killed off. It happened in quite clear stages for me and thinking about it now, the first one may have been when Metformin was stopped.... It takes a couple of weeks for the effects of Metformin to completely clear your system so I hadn't particularly given it much thought and it is quite a long time ago now so I may be misremembering. Or the Metformin is just inhibiting your liver from producing quite so much glucose (this is one of the two modes of action of Metformin.... the other being to reduce insulin resistance), which is possibly allowing a slightly less than optimum basal dose to keep you balanced.

Whatever the reason, I hope your stable BG levels continue for a long time, but don't worry if they don't.... One of the most frustrating things with Type 1 diabetes is that the goal posts keep changing and just when you find an insulin regime and strategy that works for you, it all changes and you have to find new doses and strategies. Gradually you build up an understanding of what to do to get it back on track, but just to know that unstable spells are normal (and frustrating! 🙄 ) but they don't mean that you are doing something wrong, just that you need to find different right things to do.