LADA after being initially diagnosed as T2

[DiabeticBear]

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.

Thanks Angela. I was just turned 50 when it got picked up under routine NHS screening ( no obvious symptoms but perhaps some with hindsight ) - I am 52 next month. I am still awaiting the phone call about insulin after being diagnosed on Monday and I can't quite believe I am saying this but I want to get on it as soon as possible. I am exhausted at the moment with the increasing effort I am having to put in to get my levels down ( was on the treadmill yesterday lunchtime and at 10.30 last night and again at lunchtime today)

 

[DiabeticBear]

Thanks so much for the responses so far - it really helps me personally and hopefully the wider community - certainly the common themes are poor diagnosis, a struggle to get the right tests done and a feeling that perhaps not being listened to/understood by the GP. I certainly think it should be a red flag of someone of slim build ( which I wasn't one! ) gets diagnosed with T2 out of the blue - I am not sure if it is an education thing or a cost thing - perhaps a bit of both - that the antibodies aren't tested as standard. I was told LADA was 'so uncommon' that the GP probably hasn't seen it before and it gets picked up when things go bad - I don't think that can be true - I think the cycle needs to be broken so that the '10%' of us are picked up as soon as possible by the GP, not waiting until we get even more poorly. Rant over

 

[Swillbos]

Hi DiabeticBear,
I was also picked up as T2 at my 50yo NHS screening. Was a bit shocked at the time as I had been motivated by turning 50 to make a serious effort to get fit and lose weight. Although I had lost 1.5 stones, I was still overweight and although I didn’t then know the genetics of T2 diabetes, my dad had been type two. So the initial diagnosis did make sense….

Anyway I did all the right things for several years and was a star T2 pupil for c.6 years. I started Metformin after 3-4 years and actually had a very good response. But c. 7 years in, things rapidly deteriorated and got to the point where nothing I could do would keep my blood sugar lower than 12-17. After a flurry of failed T2 drugs and more tests I was re diagnosed as LADA.

My GAD score (level of auto-immune inflammation) was >2000. In my case my long-standing history of thyroid disease top-trumped my genetic inheritance (to be fair both conditions have strongly genetic factors).

So in addition to being slim at the point of initial diagnosis (which I wasn’t) the other red flag for older onset not automatically being T2 would be history of autoimmune disease.

Good luck with it all. Your interest and perseverance tell me you will do well.

Susan xx

 

[Seaside34]

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

Thank you so much for your response. Private is not an option unfortunately. I do fear the damage being done to my body by high blood sugars, I’m really not sure what my GP can do about the wait lists but I do need to go back and see what he intends to do whilst I wait. Unfortunately they did not replace their diabetic nurse so dealt with by inexperienced GP’s. The reality of the pressures within the NHS feel uncomfortably near home.

 

[Rowgirl]

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

Hello,
I also have a similar story. At 57 I was diagnosed with type 2 diabetes, I have always exercised, but had worked night duty for 30 years, so thought that had caught up with me. I started metformin and lowered my carb intake. I started losing weight almost immediately, 1lb a week initially. After losing 3 stone in 10 months, sleeping all the time, hba1c creeping up, I asked the gp’s surgery were they sure it was type 2? I was told of course it was type 2, the gp actually said to me, “there are a lot of people walking around with higher hba1c’s than you”. 11 months after I was diagnosed type 2, I had lost 4 stones, (2lbs a day). My blood sugars were between 20-30mmols continuously and I started showing keytones in my urine. I took myself to A/E, but even there they said my gp need to sort my blood sugars out. A couple of days later after another trip to A/E, and phone calls to the gp surgery, a different diabetic nurse said he didn’t think it was type 2. I was sent to the endocrinology dept. and started on insulin. My blood tests showed 3types of antibodies and I was re diagnosed as type 1.
The whole experience was very traumatising, I can only hope that gp’s and A/E staff become better informed that adults can develop type 1 diabetes.

 

[Waterfall 888]

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.

Everyone is different but I would say from my experience.....I had a very quick introduction into type 1 via a diabetic coma. After that I only needed 0 to 0.5units of insulin depending on carb intake for a long while. My pancreas is still working several years later. It just showed that even a minor malfunction of the pancreas is a very serious issue. You are feeling unwell and that's enough information to prove something is wrong and needs attention. Can you see another gp at your practice or change surgeries. You will need long term support. My gp is very supportive, he had to guide me when the diabetic clinic was closed. The feeling that we were working together for my health, made all the difference. The coma brought on many serious health changes. I don't want anyone else to experience this. Good luck

 

[DiabeticBear]

I am still awaiting contact from the local diabetes team - in the meantime I have been looking into Insulin and see that there are different types. The consultant suggested that I would be put on a basal dose ( perhaps once but likely twice daily ) - he mentioned a brand called Levemir I think. My gut feel is that twice daily might be better than once as I can adjust it around planned exercise ( which I am planning to keep up as well as a low carb diet but perhaps not so restricted ). Does anyone have any advice - e.g. anything I should push back on?

 

[DiabeticBear]

Quick update - was put on 10 units of Semglee per day - first injection was Friday. This seems to be just a starting point and I have a check up in a week. However, it didn't seem to make a bit of difference on Friday or Saturday - I had hoped to not exercise over the weekend so I could judge how much the insulin was doing and didn't want to cloud the results. However, I ended up having to do my uphill treadmill walk for 6km and some squats to get the levels down last night. I upped my dose to 12 units this morning - the clinic is closed at the weekend but I have been very down about the lack of positive effect - seems to be a little lower today, but still bordering on double digits a lot of today. Has anyone found that hunger actually keeps their levels up? It is strange, I eat - seem to get a quick response of a lowering of blood sugar, but then my peak is about 3 hours after eating. I am wondering if I should eat more regularly - I typically try to eat between 12 and 6pm.

 

[EllieM]

Quick update - was put on 10 units of Semglee per day - first injection was Friday. This seems to be just a starting point and I have a check up in a week. However, it didn't seem to make a bit of difference on Friday or Saturday - I had hoped to not exercise over the weekend so I could judge how much the insulin was doing and didn't want to cloud the results. However, I ended up having to do my uphill treadmill walk for 6km and some squats to get the levels down last night. I upped my dose to 12 units this morning - the clinic is closed at the weekend but I have been very down about the lack of positive effect - seems to be a little lower today, but still bordering on double digits a lot of today. Has anyone found that hunger actually keeps their levels up? It is strange, I eat - seem to get a quick response of a lowering of blood sugar, but then my peak is about 3 hours after eating. I am wondering if I should eat more regularly - I typically try to eat between 12 and 6pm.

My understanding is that semglee is a long acting basal insulin, a biosimilar to lantus, which I was on before going on a pump.

Are you on a fast acting insulin as well?

I'm not familiar with how it works for new T1s or LADAs who are still (?) producing some of their own insulin, but when I was using lantus I changed the dose to keep me level overnight, and didn't expect it to help me with meals at all.

As regards your bg peaking 3 hours after eating, are you on a very low carb diet by any chance? While as a child I was taught to just calculate my insulin based on carbs, once a significant amount of your calories come from fat and protein you may need to adjust your thinking.

Bolusing for Fat and Protein

The era of continuous glucose monitoring has put a spotlight on the many fluctuations that a person with diabetes (PWD) has in a day, and even in an hour sometimes. With access to this data, it is understandable why PWD are looking to make the hills in their blood sugar roller coasters less...

childrenwithdiabetes.com

The graph in the above article show that fat and protein act on blood sugar much more slowly

I suspect that you may be expecting too much from your insulin at this early stage. Everyone has different insulin needs and it will take time for you and your diabetic team to work out yours.

It may be an overused phrase, but controlling T1 diabetes really is a marathon and not a sprint.

Good luck with your journey.

 

[DiabeticBear]

Thanks so much for such a detailed response, I really appreciate it. I am indeed on a low carb diet, I can see that the effects would be different from that graph now. The only thing that I can't explain is the very immediate drop I seem to see if I eat after I get hungry from not eating for some time.

Re the insulin type, I have some fast acting prescribed as a backup but the team are hoping that I might just need basal at the moment, depending on how much help my pancreas needs , you are right it will take some time to find a balance.

As I didn't think there was any build up effects / getting acclimatised with the Semglee ( i.e. beyond the 24 hour mark) I thought it was safe to assume the 10 units ( which did seem a finger in the air, gotta start somewhere ) wasn't enough.
I am going to call the clinic today for some advice on dosage.

 

[MarthaD]

I've suspected LADA which to date has been unsuccessfully treated with Metformin. Last week, my consultant added dapagliflozin to my medication, and the results are incredible already. I'm mostly in range for the first time in months. Will be repeating my cpeptide tests in a few months (it's at the low end of normal right now). Negative antibodies so far, so I remain a mystery! So grateful to have some glucose control, for now, at least!

 

[DiabeticBear]

Hi everyone - just an update and a hope someone on a similar regime might be able to offer some advice.

I have settled for now on a 13 unit basal dose once a day ( Semglee ). Overnight level pretty good, daytime a little higher than ideal at times - I asked if I might be more suited to a 12 hour dose so I can tweak the daytime but was told because Levemir is being discontinued they don't want to put me on it. So that's that.

However, I have started to experiment with my Trurapi - I am on day 5 of my 'identical 40g carb sandwich experiment' - I admit it is strange having my first sandwich in 35 months.

Day 1 - no bosal before eating - very rapid spike to 14.5, above 10 for about 3 hours
Day 2 - 2 units 10 mins before eating - slower spike to 13.2, above 10 for about an 60 to 90 mins
Day 3 - 3 units 10 mins before eating - bigger spike to 12.5, above 10 for about an 60 to 90 mins
Day 4 - 4 units 10 mins before eating - rapid spike to 13.2, above 10 for closer to 2 hours

Now I have been reading that some people take longer for the bosal insulin to kick in, so today...

Day 5 - 2 units 30 mins before eating - slower to respond initially - got my hopes up - then climbed quite steadily to 14 and took about an hour to get back to 10.

I have asked for a phone appointment with the clinic for guidance, but the above results aren't really very conclusive to my mind - the highs/patterns aren't that different, I don't really know what level to realistically expect as a 'peak BG level' after food - should it be going to 14? or is that to be expected but shouldn't linger for a certain amount of time?

What I do know is that when I eat a sandwich, for the sake of the experiment I do not eat for at least 2 hours but man I get hungry - the 'evil carbs' I guess.

I haven't even discussed correction dosing with the clinic yet - they only really 'endorsed' the Day 1 and Day 2 experiments.

The next one ( Day 6 ) will be either 3 units 30 mins before, or stick to 2 units but do it 60 mins before. I just don't know if my body takes longer to react, or I need more units ( or perhaps a combination of the two ).

I am quite an analytical person by nature, so was hoping to see some rough pattern emerging by now - it is rather frustrating!

 

[becca59]

@DiabeticBear the question is, what were your levels before the insulin and sandwich. If you were on a 5 that would be a massive climb. However, if it was above an 8 you are more in the ball park. For me as a type 1 the pre bolusing would need to be longer and the carb counting and insulin match bang on with a sandwich. Plus it would depend on the time of day I was eating it. Before 2pm a nightmare to manage and best avoided. After 2pm a lot easier. Levels, time of day, accuracy and pre bolusing are all important. It is a juggling act and big experiment so well done for starting down that journey and keeping results to view and analyse.

 

[DiabeticBear]

@DiabeticBear the question is, what were your levels before the insulin and sandwich. If you were on a 5 that would be a massive climb. However, if it was above an 8 you are more in the ball park. For me as a type 1 the pre bolusing would need to be longer and the carb counting and insulin match bang on with a sandwich. Plus it would depend on the time of day I was eating it. Before 2pm a nightmare to manage and best avoided. After 2pm a lot easier. Levels, time of day, accuracy and pre bolusing are all important. It is a juggling act and big experiment so well done for starting down that journey and keeping results to view and analyse.

Thanks so much for the reply, yep I should have said the average starting point was around 7, my basal dose is having me wake up around 5.9 which I am happy about, by the time I eat the sarnie it is around 12.30. My 13 units (24hr acting) seems perfect overnight but not quite enough during the day

One thing I have noticed is that my levels come down quicker and with less exercise now, I was having to do so much longer exercise before to get the levels down, it was really getting me down e.g. 5 to 6 km per hour , max incline for nearly 90 minutes - and that was in the late evening after doing an hour at lunchtime too. I know I now have to be hypo aware so haven't pushed it e.g. when I actually want to do a heavier gym session, not out of necessity, but there are already too many variables without putting heavy exercise into the mix!

 

[searley]

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

More tests don’t always work…. I had more tests throughout the 10 years and still told I was t2

Not everyone is the same and not everyone has gad antibodies etc…. So there will always be misdiagnosis

 

[searley]

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.

It’s the same tests they run for t1
C-peptide and gad antibodies

However in the early stages cpep can be in the normal range and you may not have the gad antibodies so will be classed t2 anyway

It’s only as time passes and normal t2 treatments stop working