Hiya

[donerg]

Hello
My name is Doner and despite being diabetic for around 8 years I have recently been diagnosed with LADA. Has been difficult to deal with the reason why I was feeling so unwell for so long and the challenges that lie ahead. I consider myself lucky as before as when I needed to roll my sleeves up I did and have just got on with it, now I feel out of my depth as have so many questions and so few answers. Everything I thought I knew about my condition is not the right information as I was trying to deal with the type of diabetes. I am a positive, proactive person normally, however the tsunami that hit me on diagnosis, that still keeps hitting me wave after wave where I find myself bumping into unidentified objects that appear to side swipe me can be more challenging at times than the condition. Is this feeling normal as I do not know anyone else with diabetes, let alone LADA.

 

[Leadinglights]

Welcome to the forum. At least now you have the correct diagnosis and can begin appropriate treatment.
There are quite a few other who are also LADA so there is plenty of expertise here to answer any questions and help you through your learning process.
If you look in the SEARCH box you should come across some threads which might help and also give you some thoughts on what to ask. Please do ask away.
Who is looking after your diabetic care as that may influence how much support you will get. What treatment plan has been started.
I hope you will soon start to feel better.

 

[donerg]

Thank you for the welcome. I am hoping for appropriate treatment and this is why I have joined the forum as do not appear to be getting much support so far and what treatment plan?
Seems I have a lot to learn.

 

[donerg]

Community diabetic nurses and there is a Consultant somewhere

 

[Leadinglights]

Thank you for the welcome. I am hoping for appropriate treatment and this is why I have joined the forum as do not appear to be getting much support so far and what treatment plan?
Seems I have a lot to learn.

You will probably find that many people will start on insulin rather that oral medication but that might depend on a number of things. Hopefully some LADA or Type 1.5 as some call it will be along to comment.

 

[donerg]

I have looked at your response to another question on what type of diabetes and I hope so as I have GAD antibodies and it looks as though my C-peptide score appears pretty low. Both consultants I spoke with never mentioned the blood test and it was the pharmacist attached to my GP surgery that requested them as from the first conversation we had she said that I did not meet the profile of a Type 2 and was right.

 

[donerg]

Thank you. I have thought about wording very carefully and came to the conclusion that I am a Type 1 and if asked as I was informed was not a typical Type 1, therefore I must be a non typical Type 1.

 

[Bruce Stephens]

Thank you. I have thought about wording very carefully and came to the conclusion that I am a Type 1 and if asked as I was informed was not a typical Type 1, therefore I must be a non typical Type 1.

So the practice pharmacist caught it which should make things simpler. Presumably the hospital team is helping you and treating you as Type 1, so will be helping with insulin dosing (including offering you support while you learn how to do it) and advising on what gadgets are likely to be useful to you (reusable insulin pens, a CGM that works for you, etc.).

Don't rely on your GP, anyway: handling Type 1 is more of a specialist thing. Unless it's something straightforward (if you want to try Libre 2 there's no reason why you can't just ask the practice pharmacist or a GP).

 

[donerg]

Thank you for your response. The pharmacist and GP's have been far more helpful and I have had a 15 minute conversation with the consultant around 3ish months ago who confirmed LADA. Have been asking for help since July as insulin am on appears to be giving me issues where I am told I need to increase my carbs, reduce my insulin, unpleasant side effects not related to insulin, am I skipping meals? Am on Libre 2 and has suggested go back to finger pricking. Phone calls not received when claiming there will be and might be able to have an appointment with the consultant next month, maybe. Given the advice initially but highly likely insulin am on unsuitable but unable to get across this as it always appears to be my fault somehow and do not know how

 

[Leadinglights]

Thank you for your response. The pharmacist and GP's have been far more helpful and I have had a 15 minute conversation with the consultant around 3ish months ago who confirmed LADA. Have been asking for help since July as insulin am on appears to be giving me issues where I am told I need to increase my carbs, reduce my insulin, unpleasant side effects not related to insulin, am I skipping meals? Am on Libre 2 and has suggested go back to finger pricking. Phone calls not received when claiming there will be and might be able to have an appointment with the consultant next month, maybe. Given the advice initially but highly likely insulin am on unsuitable but unable to get across this as it always appears to be my fault somehow and do not know how

Perhaps people may be able to help you with some suggestions if you say what insulins and dose regime you are on.

 

[donerg]

Ok. Am on Novorapid first was 1 unit for 10gms carbs each meal time which has gone down to half a unit then suggested no insulin with breakfast and lunch, half unit per 10gms at dinner (or largest meal) and Levemir 6 units night time for background. This was decided as after blood sugars rising after meals they would drop and not stop dropping, even quicker if I exercised, moved or anything.

 

[Inka]

Thank you for your response. The pharmacist and GP's have been far more helpful and I have had a 15 minute conversation with the consultant around 3ish months ago who confirmed LADA. Have been asking for help since July as insulin am on appears to be giving me issues where I am told I need to increase my carbs, reduce my insulin, unpleasant side effects not related to insulin, am I skipping meals? Am on Libre 2 and has suggested go back to finger pricking. Phone calls not received when claiming there will be and might be able to have an appointment with the consultant next month, maybe. Given the advice initially but highly likely insulin am on unsuitable but unable to get across this as it always appears to be my fault somehow and do not know how

I don’t quite understand what you’re saying here - are you skipping meals or is someone suggesting that you’re skipping them when you’re not? What are the unpleasant side effects? Why has it been suggested you return to finger-pricking? What are the issues with your insulin? If you’re going low then yes, you need less insulin or more carbs for that insulin.

Have you done a basal test? How are your blood sugars overnight?

 

[donerg]

It has been suggested that I am skipping meals when I am not. I am actually enjoying food. Tingling in hands, face, nose, ears, pain above eye and tingling up the side of head when blood sugars rise or fall quickly. I also itch almost everywhere and now taking anti-histimes . Not got to the bottom of the returning to finger-pricking. Not being on insulin before I knew it would be difficult to manage so maybe I am being to quick in wanting to discuss changes.

No I have not done a basal test. My blood sugars overnight were the only stable part of this. Now my readings are higher as I am higher during the evening before I take it.

 

[donerg]

I have halved my insulin for the same amount of carbs however this does not take me back into under 10mmols and am finding I am having to wait longer before eating my next meal.

 

[Eternal422]

I have halved my insulin for the same amount of carbs however this does not take me back into under 10mmols and am finding I am having to wait longer before eating my next meal.

Hi there and welcome to the forum! This is a great place for both support and information so I’m sure you’ll get a lot from here.

Just reading through your last post, I don’t understand why you have halved your insulin and then saying that it doesn’t take you back under 10? To reduce your blood sugar (BG) you need to have enough insulin to balance the carbs you eat, taking less will mean that your BG will stay high. You said in an earlier post that you were told to use Novorapid at a rate of 1 unit for every 10g of carbs but that this had to be reduced as after the initial rise your BG started to drop rapidly. I wonder if this is because your pancreas is still producing some insulin?

It sounds like LADA is a bit tricky as you will not know how much insulin you are still producing and therefore how much additional insulin you will need to inject. Novorapid at 1U to 10g carbs is a typical starting dose for someone who is not producing any insulin, yet 6U of Levemir is very low and so would fit in with the fact you are producing your own insulin still.

I can totally understand how you are feeling. Diabetes is a real pain at the best of times - there are so many variables at play that a simple formula of insulin dose will not always give you the same results. But don’t give up! Your Diabetic Specialist Nurse (DSN) and consultant will be able to help enormously and guide you to the correct insulin regime to achieve more stable control.

Hopefully someone with LADA will be along on here to help you further.

 

[Inka]

It has been suggested that I am skipping meals when I am not. I am actually enjoying food. Tingling in hands, face, nose, ears, pain above eye and tingling up the side of head when blood sugars rise or fall quickly. I also itch almost everywhere and now taking anti-histimes . Not got to the bottom of the returning to finger-pricking. Not being on insulin before I knew it would be difficult to manage so maybe I am being to quick in wanting to discuss changes.

No I have not done a basal test. My blood sugars overnight were the only stable part of this. Now my readings are higher as I am higher during the evening before I take it.

Ah, I understand. Why has it been suggested you’re skipping meals? Have you lost weight or is it being suggested you’re going low because you’re not eating enough?

The itching could be something as simple as dry skin due to high blood sugars, or perhaps it’s a reaction to your insulin - rare but worth keeping in mind. Some people can tolerate certain insulins better than others.

Could the tingling and pain in your face be due to inadvertently clenching the muscles in your face? I had a lot of pain in my whole head and worked out it was due to tension. It was only a slight mis-positioning of a muscle/joint that caused mine.

 

[Inka]

I have halved my insulin for the same amount of carbs however this does not take me back into under 10mmols and am finding I am having to wait longer before eating my next meal.

Ok - a couple of things. First, Levemir is usually taken twice daily so it might be that you need a small amount of insulin in the morning to help smooth your sugars over the day.

Secondly, it’s easier to think of how much insulin you’re taking in the following way: 1:20g, ie one unit of insulin for each 20g of carbs. This is called a meal ratio and they can vary for different meals, eg 1:8 for breakfast, 1:10 for lunch, 1:12 for evening meal. Doing it in that way is the usual way but importantly it also makes it easier to work out adjustments. You say you started on 1:10g then “halved your insulin” (ie to 1:20g in the system I’ve explained above), but it could be that you need a 1:15g ratio, for example - that is, one unit of insulin for every 15g carbs (or 1:16 or whatever).

 

[Lucyr]

Have you done the free Bertie online carb/insulin training course? Sounds like you’d benefit from educating yourself more on how insulin works.

 

[richardmillar11]

HI there
LADA here also. I've read your thread. I have had a lot of the symptoms that you have had and yet I have not started on insulin yet. Up until June my levels were controlled by diet alone. Then I started metformin which as expected didn't really work. They would control the spike on the evening meal a bit but not enough on their own. When my Hba1c started to reduce I had the itch all over and in fact my feet and legs broke out in like hives very very itchy and very very sore but that has all calmed down now. My levels are high in the evening and fasting blood sugar up to usually 9 now and can somtimes hit 10. I can control the evening rise by diet and exercise but nothing will bring down the fasting blood sugar. If I want a low reading I need to wake and test at 6am and get up and get breakfast otherwise it will just keep rising. After I eat breakfast mostly I am back in range in two hours and will drop to the lowest 4 before lunch. At this stage like you I can experience the tingling hands nose forehead, like a numb feeling, and my feet are usually freezing. So far my treatment is has started with oral meds and if the new medication doesn't work then straight to insulin. Whilst this is something I'd like to avoid I know myself it is the better treatment and probably easier on the body than taking tablets and in one way if I need it I'd rather just get started and get on with it.

You are not alone in how you feel mentally. Usually like you I have pro-active and positive but I have days now where I just feel its bigger than me and more than I can deal with. Take comfort in the fact there is plenty of support here. The mental aspect of this has been more difficult to deal with than the physical.

 

[donerg]

Hi there and welcome to the forum! This is a great place for both support and information so I’m sure you’ll get a lot from here.

Just reading through your last post, I don’t understand why you have halved your insulin and then saying that it doesn’t take you back under 10? To reduce your blood sugar (BG) you need to have enough insulin to balance the carbs you eat, taking less will mean that your BG will stay high. You said in an earlier post that you were told to use Novorapid at a rate of 1 unit for every 10g of carbs but that this had to be reduced as after the initial rise your BG started to drop rapidly. I wonder if this is because your pancreas is still producing some insulin?

It sounds like LADA is a bit tricky as you will not know how much insulin you are still producing and therefore how much additional insulin you will need to inject. Novorapid at 1U to 10g carbs is a typical starting dose for someone who is not producing any insulin, yet 6U of Levemir is very low and so would fit in with the fact you are producing your own insulin still.

I can totally understand how you are feeling. Diabetes is a real pain at the best of times - there are so many variables at play that a simple formula of insulin dose will not always give you the same results. But don’t give up! Your Diabetic Specialist Nurse (DSN) and consultant will be able to help enormously and guide you to the correct insulin regime to achieve more stable control.

Hopefully someone with LADA will be along on here to help you further.

Thank you. I hope so as I am confused and a bit overwhelmed at the moment.
It is felt that because I am dropping so quick that it could be down to too much insulin, however as you said there are so many variables. I know I need insulin to balance the carbs and am trying the best I can to find the balance.

I may not know how much insulin I am producing however I do have my C-peptide scores, which although are still in range they appear to be low and it looks they have not protected me from antibodies.

I do not intent to give up as I am a very proactive person, am used to finding a solution to a problem and this may be more difficult for me at the present time as I am unable to find the solution. I am hoping when I get to see my DNS and/or consultant that we are able to work together on this.