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LADA after being initially diagnosed as T2

DiabeticBear

Member
Messages
14
Type of diabetes
LADA
Treatment type
Insulin
Hi - I am posting this in case it mirrors anyone else' experience - someone can perhaps provide advice or it might help someone get to the bottom of their symptoms

I was diagnosed with Type 2 diabetes in Jan 2022 with an HbA1c of 99. I was immediately prescribed 4 metformin a day, but I did some research and decided to give low carb/exercise a go. I ignored the metformin, went low carb, hit the treadmill and within a year I lost 30kg (down from 120kg) and got the HbA1c down to 41. I was very happy as I was determined not to take the pills.

However by the end of 2023 my HbA1c had crept back up to 83 - I blamed myself for being less strict over the summer food wise, I had picked up an injury which set me back a little exercise-wise but had kept the weight down and thought I was doing okay so it was upsetting. So 2024 has been about being stricter on the regime, started using a CGM, but no matter what I did the only way I could get my blood sugar to acceptable levels was more and more exercise, to the point it was getting me down, it was becoming all consuming. My last HbA1c was 57 in September - my regime just wasn't doing enough anymore and I can tell from my CGM it isn't tracking to go down. My blood sugar would creep back up again without eating and I was getting very frustrated with it. Even with an low-carb meal ( < 10g) my blood sugar would seem to spike disproportionately and stay high unless I exercised - I felt something was 'off' - as though there was another factor at play.

I spoke to my GP who basically just wanted to put me on metformin because 'that is what we do for T2 patients' but I insisted I wanted to eliminate other contributing factors so got referred to an endocrinologist - the GP couldn't request those sorts of tests himself. I ended up going privately as the wait was too long and was concerned about my blood sugar riding so high.

Yesterday I had the results and have been told that I am not T2 but actually LADA and I am currently awaiting someone to contact me from the local diabetes team regarding going onto insulin. The theory is that whilst I am still producing insulin ( honeymoon period?) it isn't sufficient to win the battle with diet and exercise alone.

Given there seems to be a common reporting that 10% of T2 diabetics are misdiagnosed and are in fact LADA I find it incredible that LADA is not even mentioned on the NHS website, mentioned by the GP nor tested routinely ( cost I suspect ) - I really shouldn't be asking for a c-peptide test just because I read about it on the internet! I will always wonder if I had the test back in 2022 I could have done things differently.

I am obviously disappointed that I will be going down the insulin path but I will be maintaining my diet/exercise which will hopefully keep my dose as low as possible for as long as possible.

Thanks for reading this far
 
I've given you a "winner" because you have done as well as possible, and you fought your corner. Looking on the bright side, if you hadn't had that first diagnosis you wouldn't have discovered low carb and exercise and learned so much. You are truly doing so well.
 
Thanks so much that is very kind
 
There always seems to be a confirmation bias at play with a Type 2 diagnosis. If you are older with raised blood sugars, because 90-95% of diabetics are Type 2 you must be too. It’s quite startling. It’s only when you have exhausted every blood lowering medication do they think autoimmune diabetes. My brother was Type 2 for a few years, kept his blood sugar in the prediabetic range, until his blood sugars went into the 40’s with diabetic keto acidosis symptoms. They then tested his c-peptides and tested for autoimmune antibodies he got a Type 1 late onset diagnosis.

My brother just went with the flow. Good for you for pushing to find out what was going on with your blood sugars. You got the correct diagnosis.
 
I was classed T2 for 10 years before then being reclassified to T1/lada

Starting insulin early is probably a good idea, because you pancreas gets a rest, and keeping good control is easier as your pancreas helps with small errors in insulin doses

The longer you can preserve your own pancreas the easier it will be for you

Also being classed as t1 you actually get more help on the nhs
 
I was T2 for 3 years before things started going **** up. 3 further years of trying every single med, low carb, nothing working then a Covid infection sent my blood sugars above 20 where they stayed and would not drop whatever I did. Saw the GP, started on insulin, tests showed LADA. A few months ago got my first HBA1C back after starting mealtime insulin in addition to basal, and it's come down to 49 which i am happy with. At last I feel like I have some control back. I think it's really not unusual, the nurse said to me that she often finds slim Type 2s actually have LADA instead of Type 2.
 
I was diagnosed as type 2 two years ago. My consultant now thinks I've LADA because of decreasing cpeptide, weight loss (already slim), poor response to metformin, etc. Blood tests not showing any antibodies though. Has anyone else experienced negative antibodies who had LADA? Thanks
 
Gosh this mirrors my own story so much! It took 10 years for me to finally get my LADA diagnosis finally through my own persistence got it confirmed.
I’m now under a fantastic team with an amazing DSN, on insulin and living a ‘normal’ life.
When I was diagnosed LADA the first thing my consultant said which really helped me was , ‘it’s not your fault’, which made me feel so much better after doing everything I could to get my levels in range.
Insulin allows you to live a life.
 
 
Hello
I have had a similar experience as yourself. Told T2, but struggled, private tests showed LADA. I agree that on a first diagnosis more tests should be done
However after a couple of years tests showed that I nolonger produce insulin and I am now on an insulin pump, this helps.
I still do gym to help, and it does. But carryon your good work
 
I was diagnosed with diabetes 10 years ago, at 73, and it was assumed that I was T2. I have never been overweight so I was put on a different medication whose name I have forgotten. It had no effect so I was put on insulin within a month, and have been stable ever since.

My messages were about insulin:
- It works!
- The main problem is avoiding hypos.
- It took at least a year for me to get used to the discipline. You have to accept that it is unrelenting in its demands. If you don't like it, tough!

As an aside, I am on a fairly high carb diet. The important thing is to balance your insulin and your carb intake. That requires discipline.

Good luck!

Jonathan
 
Well done to control your blood sugar levels. You don't give your age but I suspect you are older than normal for a type 1 diagnosis. I was diagnosed 7 years ago at the age of 68. I had been in denial in spite of symptoms because I was under the impression that type 1 was a young person's disease and being normal weight and very fit and active I didn't believe I could have type 2. I was lucky in one sense because I ended up in hospital with a dka and was immediately put on insulin to bring my bring my blood sugar levels down. A blood test confirmed antibodies in my blood from type 1. There is nothing other than insulin which will treat this. As someone on this forum once said " I would need insulin if I ate nothing but broccoli". I had a very long honeymoon period and it seems you will too. Since my diagnosis I have maintained normal levels of blood sugar and limited my insulin needs through diet and exercise. I'm sure you will do this too. It is not always easy of course but it is possible. So good luck and best wishes.
 
What tests do you need for LADA, my HBA1C is 107, currently waiting for Endo referral which says it has an average waiting time of 17 weeks. Meanwhile the GP is doing nothing and I feel terrible. Low cortisol aswell.
 
This mirrors what happened to me almost exactly. Diagnosed Type 2 in Summer 2016..did well until Dec 2017 and got the news of LADA in Jan 2018 (after my doc telling me off for a high HBA1c despite the same efforts as yourself and me bursting into tears saying there is literally nothing else I can do).
It's tough at the beginning and I'm sure, like me, it is a shock for you. I was devastated to go onto insulin and CGM (wasn't offered it for type 2) but it isn't as bad as I first thought.
I was still in the honeymoon period at first but think that is well over now and insulin is a way of life now. But it hasn't stopped me....moved abroad and still have my long haul holidays. What doesn't kill you makes you stronger.
Good luck!!!
 
Hello,

You have described my T2 experience pretty much to the letter. I am currently awaiting blood results to see what type of diabetes I have. I was diagnosed three years ago. I did go on metformin, followed Dr Michael Moseley's diet and lost a lot of weight and got my glucose levels down to an acceptable level. Then readings kept going up and up until I was told I needed insulin, yet still levels are erratic, very high or very low.

I am under the care of my local specialist diabetes nurse team, who did recommend I have 40g of carbs per meal. They are very supportive, but don't seem to accept that if I eat the recommended anount of carbs, not only would my weight increase, but the glucose levels would remain high.
I find the condition rules my life and unless I am very, very strict with myself, virtually no carbs at all, the glucose levels increase to very high levels. I find the whole experience debilitating to say the least.

Thanks for your patience while I rant.
 
You have done really well to stay at the levels you are. I was diagnosed T2 for a couple of years, every med I tried had adverse side effects, the drs basically told me it was my own fault and i wasn’t trying hard enough, I lost 5 stone and it was still out of control, I only found out about lada when I had a DKA and ended up in intensive care for 6 days, I was put straight on insulin and tbh I felt better than I had in years within a couple of weeks. I was diagnosed just as the first Covid lockdown started so only had phone appointments for about a year, I went from a 90+ hba1c down to 58 in the first year and now I’m down to 48. T1 care is so much better than T2.
 
More or less exactly what happened to me! Diagnosed with type 2 and put on metformin in January 2013, I was 51 years old not overweight, I was 5ft 6" and weighed 9 stone . My brother was diagnosed type 1 at age 13, he is one year younger than me, so I thought I was lucky just getting type 2 all these years later.
I went on the metformin and did loads of research online. Found out that type 2 could be reversed so that's what I set out to do. Discovered low carb and completely change my eating habits. Bloods sugars did come down but not enough. Diabetic nurse was worried as I was loosing weight too, lots of it. She got me to see doctor again who referred me to an endocrinologist. Another blood test later and in October 2013 weighing 6 stone I was diagnosed with type 1. He told me he was surprised I was still alive or at least not hospitalised! I put that down to the low carb diet and patted myself on the back.
I was put straight on insulin and I set about getting my muscle mass back with exercise.
Now I weigh 8.5 stone and manage to keep my sugars at a level of that of a non diabetic using insulin and low carb diet. My DSN gives me an A* every time I see her
We got this people, keep up the good work.
 
Well done for making wise decisions and being so proactive, doing the best for your health. Someone on this forum gave me this advice when I was diagnosed as LADA ....I will pass it on to you. Insulin is your friend. I didn't feel like this in the beginning, I was on half a unit of insulin and could go without on a strict low carb diet. However my energy levels were very low without carbs. I am happier eating a healthy diet with flexibility for big carb, medium carb and low carb days, eating what I choose, and dosing up or down. Wish you all the best
 
Seaside34 said:
What tests do you need for LADA, my HBA1C is 107, currently waiting for Endo referral which says it has an average waiting time of 17 weeks. Meanwhile the GP is doing nothing and I feel terrible. Low cortisol aswell.
Click to expand...
IMHO I think you need to request C-Peptide and antibody tests. I got referred to an Endo by my GP (at my insistence - he just wanted to give me metformin) - the referral came through on the NHS app fairly quickly and was given the choice of 3 hospitals but the wait was too long for me. I am fortunate that I have Bupa through work ( I still have to pay tax on that and pay an excess so it isn't 'free' but I still appreciate it ) which meant I waited about a week. He requested some other tests, but the main one I wanted was the C-Peptide test which I believe infers how much insulin you are producing. I was advise to eat breakfast before the test, others I have seen on the forums were advised not to eat - so confusing!

However I believe the presence of anti-bodies seems to confirm that the pancreas is being attacked by your auto-immune system ( disclaimer I am not a medical professional! ).

To have the initial consultation , a suite of various blood tests and a follow up consultation looks to be, from what I can make out by the paperwork, around £750 worth of claim if that helps. I imagine it varies from practice to practice - also I don't know if they charge differently if not via insurance. Obviously it is not a trivial amount but some frame of reference perhaps.

I hope you can perhaps get this fast tracked if you are feeling unwell - I did ask the consultant what would have happened had I not had the test and he said basically I would have started getting bad symptoms ( which are irreversible in some cases ) or at worst ended up in hospital - so if you are very unwell I would recommend you go back to the GP
 
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