non insulin LADA

[knowlestr]

hi,
been looking but can't find any answers to the question I have.

I have ben diagnosed with T1 LADA for just over 2 1/2 years now. I am the only T1 LADA on the GPs books so am a bit of an anomaly for him - doesn't quite know how to pigeon hole me!

I take 4 x 500mg Metformin a day (2 at breakfast, 2 with the evening meal) and 1 x 100mg of sitagliptin on a morning. Up until about 2 weeks back all was ok, but then I caught a head cold and that sort of wiped me out. Little or know energy.

2 weeks on and the head-cold is still there, I am still tired and achey, but my last 2 days of pin prick tests show 10.5 and 11.1 mmol/L on my Freestyle Libre. I tested for Ketone (as advised by the nurse on initial diagnosis should I reach double figures) but this sits at 0.2mmol/L .

Should I be going to A&E, the diabetic clinic , the GP or is it likely that it will resolve itself should my cold have the good grace to go away?

thoughts / comments welcomed

Richard.

 

[DCUKMod]

hi,
been looking but can't find any answers to the question I have.

I have ben diagnosed with T1 LADA for just over 2 1/2 years now. I am the only T1 LADA on the GPs books so am a bit of an anomaly for him - doesn't quite know how to pigeon hole me!

I take 4 x 500mg Metformin a day (2 at breakfast, 2 with the evening meal) and 1 x 100mg of sitagliptin on a morning. Up until about 2 weeks back all was ok, but then I caught a head cold and that sort of wiped me out. Little or know energy.

2 weeks on and the head-cold is still there, I am still tired and achey, but my last 2 days of pin prick tests show 10.5 and 11.1 mmol/L on my Freestyle Libre. I tested for Ketone (as advised by the nurse on initial diagnosis should I reach double figures) but this sits at 0.2mmol/L .

Should I be going to A&E, the diabetic clinic , the GP or is it likely that it will resolve itself should my cold have the good grace to go away?

thoughts / comments welcomed

Richard.

Hi there, @knowlestr - We have another LADA, @Ian DP who managed long terms without insulin, although if my memry serves me well, he had started on some basal insulin, with fast acting in reserve should things get out of hand. If you have a look at hos posting history, here, you might find some posts that chime with you: https://www.diabetes.co.uk/forum/members/ian-dp.91575/

In terms of you predicament of the day, 10-11, although higher than you are used to isn't very, very high, and you have confirmed your ketones are modest. Obviously nobody likes to see double figures.

It could seem sensible to put a quick call into 111, just to touch base, and seek a professional opinion. They may put you in touch with an out of hours GP, or direct you to specific professional advice.

Someimes it's better to be safe than sorry - especially if you're a bit out of the ordinary.

Just one thing, when you have a moment. Would you pleasae make an adjustment to the diabetes type on your profile? It currently sattes T2, and that could have quite an impact on the responses you recieve.

To change your profile, just hover your cursor on your name, then go to Personal Detail on the menu on the left hand side, then save the changes.

Let us know how you get on.

 

[knowlestr]

Hi there, @knowlestr - We have another LADA, @Ian DP who managed long terms without insulin, although if my memry serves me well, he had started on some basal insulin, with fast acting in reserve should things get out of hand. If you have a look at hos posting history, here, you might find some posts that chime with you: https://www.diabetes.co.uk/forum/members/ian-dp.91575/

In terms of you predicament of the day, 10-11, although higher than you are used to isn't very, very high, and you have confirmed your ketones are modest. Obviously nobody likes to see double figures.

It could seem sensible to put a quick call into 111, just to touch base, and seek a professional opinion. They may put you in touch with an out of hours GP, or direct you to specific professional advice.

Someimes it's better to be safe than sorry - especially if you're a bit out of the ordinary.

Just one thing, when you have a moment. Would you pleasae make an adjustment to the diabetes type on your profile? It currently sattes T2, and that could have quite an impact on the responses you recieve.

To change your profile, just hover your cursor on your name, then go to Personal Detail on the menu on the left hand side, then save the changes.

Let us know how you get on.

ok, thanks for that. I have made the updates and will get on to the 111 number a little later.

rgds

 

[Daibell]

Hi. Those BS figures are not too bad and no need to do anything in my opinion unless they start going higher. T1 LADA is best treated as 'T1' but the honeymoon period can last for years when it may be treated as 'T2' as I was. Can I ask for interest how you were diagnosed as LADA?

 

[DCUKMod]

ok, thanks for that. I have made the updates and will get on to the 111 number a little later.

rgds

Thanks for making those changes.

 

[knowlestr]

Hi. Those BS figures are not too bad and no need to do anything in my opinion unless they start going higher. T1 LADA is best treated as 'T1' but the honeymoon period can last for years when it may be treated as 'T2' as I was. Can I ask for interest how you were diagnosed as LADA?

hi, Daibell, the figures are not crazy, but nor are they going down. I have a constant headache, and eye pain in my left eye. These have all been constant now for about 3 weeks, as is the lack of energy. But interestingly when i did manage some exercise - whether that be a cycle ride or gardening I managed to drop to 4.2 immediately afterwards.

I was diagnosed initially as T2, but the wife was not happy with this - I was so far out of the loop not to know what was occurring! - so pushed for additional tests which identified the T1 LADA aspect

 

[Daibell]

hi, Daibell, the figures are not crazy, but nor are they going down. I have a constant headache, and eye pain in my left eye. These have all been constant now for about 3 weeks, as is the lack of energy. But interestingly when i did manage some exercise - whether that be a cycle ride or gardening I managed to drop to 4.2 immediately afterwards.

I was diagnosed initially as T2, but the wife was not happy with this - I was so far out of the loop not to know what was occurring! - so pushed for additional tests which identified the T1 LADA aspect

Thanks for the reply. I would see the GP about the headache and eye pain as they will not be related to diabetes but you need to determine the cause. I'm not the right person to try to pin-point your diabetes type/condition. I would keep testing 2 hours after a meal and see what the trend is. I assume you are having a sensibly low-carb diet? The GP can always add something like Gliclazide or start insulin if your BS does go up which may happen if you are in the honeymoon period.

 

[KK123]

Hi @knowlestr, I was diagnosed as type 1 almost 2 years ago (had the GAD test which was positive and the C peptide test which showed 'low end of normal). At 56 years of age back then I suspected this was 'Lada' but the Consultants insist on calling it type 1 and don't seem to want to recognise lada. It matters not really but my h1ac was 15% and I had high ketones so off to hospital and 24 hours later, sent home on insulin. In the first 3 months or so, even on very low doses of insulin I kept going very low, they said to stop the insulin as I was probably in the honeymoon period. I did so and my numbers (on a very moderate carb diet) hovered between 6 and 10.

Now I know you might say those number were ok but I didn't feel great and I was very tired and of course I was low carbing. I re started my insulin, still small amounts and immediately felt better. I am still on low doses (around 2 units with food and 10/12 Lantus each evening). I have read lots about the benefits of starting insulin at an early stage once diagnosed with 'lada' and lots about it making no difference. I don't know the answer to that but I prefer to have access to insulin so I can use it when needed and possibly keep my remaining beta cells alive. Without it I would be scared to eat ANY carbs!

I would not be satisfied if my numbers were around 10 and I think you should contact your team to see what they advise. It may be after your 2 years of 'lada' that your honeymoon period may be coming to an end if that's what it was (just a guess mind) or your recent illness, my Consultant did say to me keep a close eye on your numbers and adjust the insulin dose accordingly.

I agree with Diabell and it does seem a hit or miss affair as to WHEN a type 1/lada is put on insulin as a type 1 or is left being treated as a type 2 because of the honeymoon period. Personally I am happy being on insulin as I can be more flexible in what I eat and how to control my numbers. I choose to eat around 60/70 carbs but sometimes more). Can you tell us your recent h1ac?
I do hope you will report back to us. x

 

[NewlyLADA]

Hi @knowlestr, I was diagnosed as type 1 almost 2 years ago (had the GAD test which was positive and the C peptide test which showed 'low end of normal). At 56 years of age back then I suspected this was 'Lada' but the Consultants insist on calling it type 1 and don't seem to want to recognise lada. It matters not really but my h1ac was 15% and I had high ketones so off to hospital and 24 hours later, sent home on insulin. In the first 3 months or so, even on very low doses of insulin I kept going very low, they said to stop the insulin as I was probably in the honeymoon period. I did so and my numbers (on a very moderate carb diet) hovered between 6 and 10.

Now I know you might say those number were ok but I didn't feel great and I was very tired and of course I was low carbing. I re started my insulin, still small amounts and immediately felt better. I am still on low doses (around 2 units with food and 10/12 Lantus each evening). I have read lots about the benefits of starting insulin at an early stage once diagnosed with 'lada' and lots about it making no difference. I don't know the answer to that but I prefer to have access to insulin so I can use it when needed and possibly keep my remaining beta cells alive. Without it I would be scared to eat ANY carbs!

I would not be satisfied if my numbers were around 10 and I think you should contact your team to see what they advise. It may be after your 2 years of 'lada' that your honeymoon period may be coming to an end if that's what it was (just a guess mind) or your recent illness, my Consultant did say to me keep a close eye on your numbers and adjust the insulin dose accordingly.

I agree with Diabell and it does seem a hit or miss affair as to WHEN a type 1/lada is put on insulin as a type 1 or is left being treated as a type 2 because of the honeymoon period. Personally I am happy being on insulin as I can be more flexible in what I eat and how to control my numbers. I choose to eat around 60/70 carbs but sometimes more). Can you tell us your recent h1ac?
I do hope you will report back to us. x

I am also type 1 LADA, and I also was placed on insulin Lantus long acting, I take 3-6 units depends what time of the month I have to adjust when my fasting numbers go up or down. I personally felt so much better once on insulin. I have short acting on reserve in case I need it. I’m still in the honeymoon phase as the good cells seem to come and go. Sometimes I have to eat every 45 minutes to keep my number above 3.5. I would test your self before bed, and before and two hours after meals, what has your fasting BG been in the morning?

 

[KK123]

I am also type 1 LADA, and I also was placed on insulin Lantus long acting, I take 3-6 units depends what time of the month I have to adjust when my fasting numbers go up or down. I personally felt so much better once on insulin. I have short acting on reserve in case I need it. I’m still in the honeymoon phase as the good cells seem to come and go. Sometimes I have to eat every 45 minutes to keep my number above 3.5. I would test your self before bed, and before and two hours after meals, what has your fasting BG been in the morning?

Hi there, these lows were almost two years ago when I first started off. I am much better controlled now though. I test around 10 times a day, my fasting levels are usually dead on 6. They get lower during the day and are anything between 4 and 7.

 

[cz_dave]

hi, Daibell, the figures are not crazy, but nor are they going down. I have a constant headache, and eye pain in my left eye. These have all been constant now for about 3 weeks, as is the lack of energy. But interestingly when i did manage some exercise - whether that be a cycle ride or gardening I managed to drop to 4.2 immediately afterwards.

I was diagnosed initially as T2, but the wife was not happy with this - I was so far out of the loop not to know what was occurring! - so pushed for additional tests which identified the T1 LADA aspect

In my opinion and based on my own experience, you should switch to insulin and drop the oral medication. LADA is type 1.

 

[Boozon]

Hi @knowlestr - I was in a similar boat to you. Diagnosed with type 2 and HBa1C of about 93. Was experiencing usual symptoms and when first went to dr she said its onset type 1 diabetes.....off to hospital I went where they told me type 2. After my first consultant appointment he decided to do the GAD test, which came back positive.
I was stuck on gliclazide and metformin.
I immediately reduced my carb intake and started doing more exercise. This reduced my HBa1C down to 42 on my next appointment.
I managed to keep my levels pretty low for 2 1/2 years until they slowly started creeping up. Then one day they were constantly around 12 in the morning and it was a struggle to get them down with exercise.
They then started me on insulin.....10 units of Tresiba and Novorapid with meals. To be honest things are much better now as have the flexibility to eat what I want and not have to go out for a 50 mile walk.....I still limit carbs and go walking though.
Hope that's helps?

 

[ert]

Please contact your diabetes team. However, in the meantime, you may be interested to know that I have been told by my diabetes specialist that sugars over 13 mmol/l and blood ketones from 1.6 to 3.0 mmol/L require me to go to the hospital immediately. Your cold sounds like it's causing your blood sugars to be higher than usual. I hope you feel better soon.

 

[Marie 2]

I was misdiagnosed as a type 2 for years. Luckily medications made me sick so I was put on insulin before I was properly diagnosed. Slow acting at first and then fast acting was added. It was a few years before I first started insulin. In the honeymoon phase you still make insulin, until you don't at all eventually. I thrived and felt much better when I went on insulin.

When you are LADA, eventually you have to have insulin. When you are sick your insulin needs go up and if you're not making enough this could really add to your not doing well. I am in the US and I'm not sure what route you take, but I believe you probably should be talking to someone about starting insulin so you can use it when you need to.