Newly diagnosed LADA

[C@roline]

Hi all, the first signs of diabetes came in my late twenties with gestational diabetes. I was finally diagnosed with LADA about 3 weeks ago, I am almost 51.
Since those early days I have dedicated all my time and effort to mitigating the signs, symptoms and complications that come with all forms of diabetes. I am a fitness instructor, for example, teaching mostly LesMills group fitness. I am lean, have increased my muscle mass and am a healthy weight.
In a bid to control blood glucose levels, I have gradually decreased all starchy carbohydrates, to the point, that I believe I was, unintentionally, in nutritional ketosis. Apart from drinking a lot, I did not feel too bad on it.
I discovered, in the second year of the pandemic, when we all started seeing our diabetic teams again, that my HbA1c had risen to 102 and my random BG was 23. Because of my lifestyle, numerous ideas where discussed, including the possibility I had Pancreatic cancer. C-peptides were around 500. I was eventually put on Emagliflozin, which, along with my low carb lifestyle, seemed to work a treat. I felt really well.
However, After having flu at Christmas, my fasting blood glucose began to rise, and I couldn't do anything to bring them down. C-peptides had dropped to just over 300.
I ended up in hospital with a blood keytone level of 1.7 and the concern I might be in DKA. I was actually only in nutritional ketosis, but was given all the treatment anyway. My hospital experience was less than acceptable, and I ended up worse when I left than when I went in.
I was discharged with the LADA diagnosis and insulin treatment. Having managed for 20+ years, I am now really struggling. I feel like **** most of the time, feel really unwell with any rapid rise or lowering of BG's and seem unable to get my dosing right. I have been told not to eat less than 50g of carbs per day. I attempted this on discharge, but blood glucose was then all over the place. I am also struggling to eat more carbs due to my previous lifestyle. I often slip into nutritional ketosis, which also makes me feel extremely unwell when it happens rapidly. I have increased other macros in an attempt to compensate, something I never really looked at before. It would seem I need to eat way more protein than I had ever imagined. (Although, interestingly, this has helped keep BG relatively stable when resistance training???)
I am desperate to feel like my old self, full of vim and vigour, haha ... I have been trying to get back to my exercise regime, minus the cardio for now. #hypofright.
It is overwhelming. Not sure how you guys all manage this. I honestly think that you are all some kind of superheroes.
Thanks if you were able to read to the end, it was a lot. Any advice welcome.

 

[Antje77]

Hi @C@roline , welcome to the forum.

I was finally diagnosed with LADA about 3 weeks ago,

It takes a lot of time to find the right doses, much longer than 3 weeks.
Do you use a CGM/Libre sensor to help spot patterns?
Are you on fixed doses of insulin for now or adjusting them depending on the carbs you eat?

 

[C@roline]

I do use a libre sensor, which I do find incredibly helpful for patterns. I was initially on a sliding scale when I left hospital, but then put onto an amount per 15g of carbohydrate a couple of days later. I am really sensitive to the insulin and sometimes find that I am going low before my food has had time to start digesting. This happened last night, I took a small amount of remedy, which then elevated them rapidly. I am still in double figures, so wondering if I should go back to the sliding scale to try to bring them back down.

 

[Antje77]

I am still in double figures, so wondering if I should go back to the sliding scale to try to bring them back down.

Usually we use an insulin/carbs ratio, like your 1/15 or 1 unit per 15 grams of carbs, plus a correction factor, where you inject insulin to lower your BG when out of range. This correction can be taken before meals, together with the insulin for the meal, or in between, without eating.
I'd ask your diabetes nurse about corrections and help in determining how much a unit of insulin will drop you.

It takes time to work out your I:C ratio, because the only way to find it is to find the patterns: Calculate carbs, inject, and note premeal blood glucose. Then check post meal BG and you'll know if your dose was too high, too low or about right for that amount of carbs on that time of day.
Repeat with many meals and you and your diabetes nurse can use the information to tweak your ratios.

To make things more complicated, most of us have different ratios depending on time of day, most need more insulin for the same amount of carbs in the morning than in the evening, although not everyone does.

Then there's your basal to take into account. That one is supposed to keep you more or less level when not eating.
Finding the right basal dose takes time as well, usually people are starting on a lowish dose which is then titrated up until the sweet spot is found.
This is because there's no way of knowing how much a particular person will need without trying, it can be as little as 6 units or as much as 100 units. So it's a slow process because you don't want to overdose.

As long as the basal isn't right, it's almost impossible to find the correct ratios.
So really, it takes time, and the more data you have, the quicker things can improve.

Sounds pretty complicated but sometimes it's as simple as this: I usually have the same type of breakfast (or actually I have two usual breakfasts). Because I eat it every day I simply know how much insulin I need for it after some experimenting. First day my BG went up so I knew it needed a bit more, only tok a couple of days to work out how much insulin for a specific food.
Once you start getting the hang of it, a lot will be done without all the exact calculations because of experience.

It will get better, you're only 3 weeks in!

 

[C@roline]

Thank you

 

[Mrs HJG]

Hi @C@roline I was 51 when diagnosed as T1 LADA 15 months ago - I am sure that it is harder as you get older to adapt, as you have so many years of living 'normally' vs those diagnosed in childhood (different issues, but my opinion).

I am not on insulin, as in the first 3 weeks after diagnosis on just a few units of Humulin I was hypo-ing as I still produce 'moderate' amounts of my own, my c-peptide result was 7.52 so I have no idea what that is in other units of measurement, but it seems enough to mean I can control for now with diet, (<100g carbs per day, but no more than c.30g at a time) and moderate exercise (brisk walking), so nowhere near your workouts! My whole brain glazes over with all Keto/macro talk, (my husband and son are the gym bunnies), I need to grapple with the BG without more considerations, and so far so good.

I have been warned that as my pancreas/insulin declines, it won't be a nice smooth curve to zero, more like a dodgy old boiler that works OK sometime, struggles other days and completely refuses to go on others, so maybe you are still producing quantities that interfere with the injected insulin. This is my main worry going forward; I would rather wake up one day and find its stoped completely in one go.

I definitely find that other factors, not just food affect my BG levels, stress is a big one for me, and going for a hard, fast 20 minute walk after eating visibly reduces my levels according to Libre. It's taken me 15 months to 'relax' about it all, and work out the things I really need to worry about or can do anything about. It is overwhelming, especially when things don't go by the book, (my diabetes team don't actually know what to recommend to me as they are all 'insulin' experts).

I 'think' your hospital admission was through their fear and inexperience and you probably could have survived fine without! My HbA1c was 129.5 and ketones 1.7 and just told to call 111 if they went over 3!

I hope things settle for you, and you get your balance right soon. But this forum is a great place to come for reassurance and support if you ever need it.

 

[C@roline]

Thanks @Mrs HJG, whilst I wouldn't wish it on anyone, it nice to know your not alone. No one has mentioned your boiler analogy to me, so that's interesting. I definitely need to relax, it's difficult though, when I feel the body reacting to all the changes. People say that you get used to it all and I know of type 1 marathon runners, so logically I know there are possibilities. I knew it would be difficult, which is why I think I resisted it for so long, just gonna have to tough it out. Thank you for sharing your story, your perspective and for your supportive words.

 

[Mrs HJG]

Thanks @Mrs HJG, whilst I wouldn't wish it on anyone, it nice to know your not alone. No one has mentioned your boiler analogy to me, so that's interesting.

I have been trying to explain how my LADA is to my work as they just don't get it, so I have been trying all sorts of analogies - it's still like banging my head on the wall - if I am T1 but not on insulin and in non-diabetic range then why do I still think I am diabetic?? Having diabetes really helps you see how intelligent some people really are

 

[jonathan183]

You will find a lot of things affect both your blood glucose levels and insulin requirements. I find exercise reduces my insulin requirements and my fasting blood glucose readings - but my blood glucose increases when I exercise (but the rise reduces after around 2 days exercise in a row). I am less insulin sensitive in the morning than the afternoon/evening.

What you eat and how much you eat will affect your blood glucose levels and insulin requirements, but not just the carbs but the mix of food. Fats will tend to slow the absorption and rise of blood glucose to carbs. Carbs and protein require insulin - if you are on higher carbs then you may be able to ignore insulin requirements for protein, but on low carb you may need to make adjustments.

Because there are so many things which can affect blood glucose and insulin requirements - I'd suggest you start off trying doing the same things for a few days. Adjust insulin dose and timing to get closer to the results you want - and don't try to get to low blood glucose targets initially. Aim for stability and small rises after eating, then gradually reduce the blood glucose levels to optimum for you.

 

[C@roline]

Thanks for this, it's really helpful, especially knowing what works for others, I also seem to need more insulin in the morning and my sensitivity tends to improve throughout the day. I am wondering if anyone else has the same problem with keytones as I do and how they manage it?

Pre-insulin LADA seemed so less complicated. I think my body is adjusting to all the new fuel sources, I am normally so full of life and energy, but am tiring so quickly at the moment. I am somewhere between attempting to lead my normal life and having to rest up, as I am just flat out exhausted. I guess it will take some time.

Yes, now I am considering the fats and proteins, which I never really paid any attention to before. I am trying to eat the same/similar things, amounts of carbs, portions ect. that give good results, try to make it as predictable as possible, not sure if this something other people do or would recommend?

I think you are right to suggest stability before low blood glucose targets. Learn to walk before running. It is reassuring to know that I am looking out for the right things in any case. Thanks again.

 

[Rokaab]

Thanks for this, it's really helpful, especially knowing what works for others, I also seem to need more insulin in the morning and my sensitivity tends to improve throughout the day

Many of us do find we need different carb-ratios dependent on time of day and yes many find we need more insulin per carb in the morning, I know I certainly do. Many women also find different ratios/basals are needed dependent on time of month as well just to throw an extra spanner into the works.

Whilst you still have some insulin production you may also find your pancreas may randomly throw extra insulin into the mix, causing even more chaos

 

[jonathan183]

I am wondering if anyone else has the same problem with keytones as I do and how they manage it?

people have different response to ketones ... some feel ill at relatively low concentrations while others do not.

I can have ketones in the 5 to 6 mmol/l range without problems provided blood glucose is low - but I am on a low carb diet (and insulin only rather than combined with other medications).

 

[C@roline]

Many of us do find we need different carb-ratios dependent on time of day and yes many find we need more insulin per carb in the morning, I know I certainly do. Many women also find different ratios/basals are needed dependent on time of month as well just to throw an extra spanner into the works.

Whilst you still have some insulin production you may also find your pancreas may randomly throw extra insulin into the mix, causing even more chaos

Thanks. I did find that before insulin, first two weeks of my cycle, blood glucose was better controlled without my intervention.

 

[C@roline]

people have different response to ketones ... some feel ill at relatively low concentrations while others do not.

I can have ketones in the 5 to 6 mmol/l range without problems provided blood glucose is low - but I am on a low carb diet (and insulin only rather than combined with other medications).

I am wondering what your health care team say about ketones so high? So for me, it is only the rapid transition from glucose feeding the cells to ketones feeding the cells that makes me feel unwell, once they are at a certain level, say above 2 I feel okay, but the transition is awful, I can’t speak, think or move, literally almost paralysed, it is a little frightening.

This reaction to the ketones only started happening whilst in hospital. They were 1.7 on admission and I felt great, they were at 6.8 at one point, but after the transition I actually felt okay at that level, probably because it was never in DKA. The staff were a bit confused because my BM’s weren’t really elevated, they actually asked me if I had ever been under the care of a psychiatrist, not that there is anything wrong with being under the care of a psychiatrist, mental health it’s totally stigmatised and I ended up being treated in that trope during my admission. Though seeing a psychiatrist won’t bring my ketones down.

I don’t think the fluids really did anything, the only thing that brought the keystones down was eating a slice of toast, something I haven’t eaten for 10 years. I was practically half starved in hospital and they wondered why my ketones were high.

All I know is I felt better before admission, even though I was having difficulty controlling blood glucose, don’t get me wrong, I know I need the insulin, so I am very grateful for it. I do wonder if this lack of energy I have now, is because I am now running on glucose rather than keystones and if this lack of energy will be permanent.

 

[jonathan183]

I am wondering what your health care team say about ketones so high?

The thresholds for ketones being a concern are based on a higher carbohydrate diet - and of no use to me or the health care team when considering my situation ... I'd be going to A+E every day if I applied the standard criteria.

Dehydration caused by either high blood glucose or high ketones is a concern because your body tries to dump excess through urine - so staying well hydrated is a must.

You can't treat high ketones alone with insulin as that would result in a hypo ...

 

[C@roline]

The thresholds for ketones being a concern are based on a higher carbohydrate diet - and of no use to me or the health care team when considering my situation ... I'd be going to A+E every day if I applied the standard criteria.

Dehydration caused by either high blood glucose or high ketones is a concern because your body tries to dump excess through urine - so staying well hydrated is a must.

You can't treat high ketones alone with insulin as that would result in a hypo ...

I get you. It's very difficult to navigate it all. I guess it's just trial and error and see what works? Very interested to know what works for others.