New to type 1 diabetes

[Abs23]

Hi all, I have recently been diagnosed with type 1 and I have started monitoring my blood glucose levels and I am taking a set amount of insulin every day. I’m concerned as my blood glucose levels have been rising over the last 2 days and my latest reading tonight was 18mmol/L. The thought that I could be susceptible to DKA right now is worrying me. Does anybody have any advice? Thank you in advance

 

[rebrascora]

Hi and welcome.

Have they not given you a means of checking for Ketones? Maybe some urine sticks.... usually branded Ketostix.

Have you had something to eat with more carbohydrates than usual tonight?

The best thing to do when your levels are high like that is to drink plenty of water to flush the glucose out through your kidneys and avoid carb rich foods so anything with sugar or starchy foods like bread, pasta, rice, potatoes etc. until you start to see your levels dropping a bit. Meat and fish and eggs and green veggies are all low carb so they won't make things any worse.
Which insulin(s) have they given you and how many units have they started you on? Usually they start you off on a low dose and slowly increase it to bring your levels down slowly, but perhaps they have started you off a bit too low. Do you have a fast acting insulin and have they discussed with you about using that to correct high levels. We are not allowed to give dosing advice here on the forum, so if you have not been told about corrections then the best I can suggest is to drink plenty of water and test regularly. Doing some steady exercise like walking around will also help but you should not do anything exertive like high intensity work outs when your levels are that high though.

If you start to feel unwell or are concerned that your levels keep rising then get in touch with your team or ring 111 if it is out of hours. I know I had a scary night early on when I was first diagnosed and my levels went up to 27 after eating a packet of crackers and I sat up all night drinking water and running to the loo. Thankfully it was coming down the next morning but I avoided anything carbohydrate rich after that.

Please update us and let us know how you get on.

 

[trophywench]

Hi Abs

So what plans are afoot to adjust your insulin as and when necessary? Usually they start us off on conservative doses - but at the end of the day we each need the doses we need - not an intelligent guess! As long as you have SOME insulin circulating you are unlikely to suddenly go into a coma, but it ain't exactly healthy being that high for very long. Do you have the means to test your blood for ketones? - that's like a different blood glucose meter using different test strips.

 

[Abs23]

Hi and welcome.

Have they not given you a means of checking for Ketones? Maybe some urine sticks.... usually branded Ketostix.

Have you had something to eat with more carbohydrates than usual tonight?

The best thing to do when your levels are high like that is to drink plenty of water to flush the glucose out through your kidneys and avoid carb rich foods so anything with sugar or starchy foods like bread, pasta, rice, potatoes etc. until you start to see your levels dropping a bit. Meat and fish and eggs and green veggies are all low carb so they won't make things any worse.
Which insulin(s) have they given you and how many units have they started you on? Usually they start you off on a low dose and slowly increase it to bring your levels down slowly, but perhaps they have started you off a bit too low. Do you have a fast acting insulin and have they discussed with you about using that to correct high levels. We are not allowed to give dosing advice here on the forum, so if you have not been told about corrections then the best I can suggest is to drink plenty of water and test regularly. Doing some steady exercise like walking around will also help but you should not do anything exertive like high intensity work outs when your levels are that high though.

If you start to feel unwell or are concerned that your levels keep rising then get in touch with your team or ring 111 if it is out of hours. I know I had a scary night early on when I was first diagnosed and my levels went up to 27 after eating a packet of crackers and I sat up all night drinking water and running to the loo. Thankfully it was coming down the next morning but I avoided anything carbohydrate rich after that.

Please update us and let us know how you get on.

Hello! Thank you.
I haven’t been given anything to monitor my ketones with yet. I had to source my own blood glucose monitor because there wasn’t one in stock for me when I needed it!
Nothing high in carbs, I make sure I monitor my carb and sugar intake closely for this reason.
I am on Lantus 8 units per day and Novorapid 2 units with each meal. I haven’t actually had any advice on what to monitor or look out for or how to correct hypers/ hypos. I’m waiting to see the nurse to go through all of this.
I have just talked to an out of hours GP and have been advised to monitor my blood glucose levels more regularly and to seek medical help if it increases above 24mmol/L.
I will take your advice and drink plenty of water tonight. Thank you for your help, it’s greatly appreciated!

 

[Abs23]

Hi Abs

So what plans are afoot to adjust your insulin as and when necessary? Usually they start us off on conservative doses - but at the end of the day we each need the doses we need - not an intelligent guess! As long as you have SOME insulin circulating you are unlikely to suddenly go into a coma, but it ain't exactly healthy being that high for very long. Do you have the means to test your blood for ketones? - that's like a different blood glucose meter using different test strips.

I don’t have a review for another 2 weeks for my insulin but I am due to see my nurse next week at some point to go through everything more in depth.
I don’t have a ketone monitor yet, I’m waiting for them to source one.
Thank you for your response!

 

[trophywench]

You are waiting for an NHS hospital diabetes department to source a ketone meter???? They think someone newly diagnosed doesn't need their insulin dose reviewed for a whole fortnight???

Thank God I live where I have access to a choice of decent hospitals and two diabetes clinics at the end of a telephone 5 days a week.

Sorry - I'm appalled.

 

[stephknits]

Are you under the GP surgery or the hospital clinic? A newly diagnosed type 1 really needs expert help from the hospital team with, as trophywench says, access to help down the phone when you need it. They should be working with you to review your insulin much more frequently.

 

[Abs23]

You are waiting for an NHS hospital diabetes department to source a ketone meter???? They think someone newly diagnosed doesn't need their insulin dose reviewed for a whole fortnight???

Thank God I live where I have access to a choice of decent hospitals and two diabetes clinics at the end of a telephone 5 days a week.

Sorry - I'm appalled.

Unfortunately yes I am. With what’s happening with the pandemic, the specialists are taking on very few patients and as it was taking so long to get a referral, I went to see a private endocrinologist to speed up the process but I’m still waiting around for a lot of things that I need.
You’re very lucky!

 

[Abs23]

Are you under the GP surgery or the hospital clinic? A newly diagnosed type 1 really needs expert help from the hospital team with, as trophywench says, access to help down the phone when you need it. They should be working with you to review your insulin much more frequently.

I’m under my GP and through a private endocrinologist as the NHS diabetic specialist are taking on very few patients at the moment. I’m hoping this will all be resolved next week, but thankfully I managed to speak to an out of hours GP late last night and he explained what I needed to do and what to look out for.
Thank you for your response!

 

[SB2015]

Welcome to the forum @Abs23

Sorry to hear about your diagnosis. I am guessing that you are in the hands of your GP Practice at present. They rarely have a lot of experience of dealing with T1, and often apply what they have learnt of T2, which just won’t work.

It is Essential that you are monitoring your glucose levels at each meal, and you will eventually be taught how to adjust your insulin doses. Finessing this will take time but you do not want to wait a fortnight before your next appointment. You should be helped to adjust your insulin way before that, as the first doses are simply a best guess. At present with high levels it is clear that you need more.

I would ask for a referral to the specialist team at your local hospital. They are the experts with T1, and will have the background knowledge that is needed to teach you wto self manage this. Youneed to be under a consultant and a Diabetes Specialist Nurse.

 

[Abs23]

Welcome to the forum @Abs23

Sorry to hear about your diagnosis. I am guessing that you are in the hands of your GP Practice at present. They rarely have a lot of experience of dealing with T1, and often apply what they have learnt of T2, which just won’t work.

It is Essential that you are monitoring your glucose levels at each meal, and you will eventually be taught how to adjust your insulin doses. Finessing this will take time but you do not want to wait a fortnight before your next appointment. You should be helped to adjust your insulin way before that, as the first doses are simply a best guess. At present with high levels it is clear that you need more.

I would ask for a referral to the specialist team at your local hospital. They are the experts with T1, and will have the background knowledge that is needed to teach you wto self manage this. Youneed to be under a consultant and a Diabetes Specialist Nurse.

Thank you!
Yes I’m going to be calling my GP first thing Monday morning to get an appointment so that I can be properly monitored and be taught how to adjust my insulin.
The specialist team isn’t taking on many new patients at the moment due to the pandemic and its proven very difficult to get in touch with them! I do however have a endocrinologist that specialises in type 1 who is supporting me at the moment from a private hospital, but again proving difficult to have a face to face appointment.
Thank you for your response!

 

[everydayupsanddowns]

and avoid carb rich foods so anything with sugar or starchy foods like bread, pasta, rice, potatoes etc. until you start to see your levels dropping a bit.

I’m sorry @rebrascora but I’m going to have to pull you up on that advice! It was given when we didn’t know what fixed dose the OP was taking, and while 18 obviously isn’t ideal advising someone who has said they are on fixed doses to avoid all main sources of carbs could have been very dangerous and a single fixed dose might have been enough to plunge the OP from high into a crashing hypo 😱

I know you have chosen a low carb approach, but many T1s are given doses believed to be sufficient for them to eat 200+ g of carbs a day - and we didn't know what @Abs23 had been to.s at the time.

 

[everydayupsanddowns]

Thank you!
Yes I’m going to be calling my GP first thing Monday morning to get an appointment so that I can be properly monitored and be taught how to adjust my insulin.
The specialist team isn’t taking on many new patients at the moment due to the pandemic and its proven very difficult to get in touch with them! I do however have a endocrinologist that specialises in type 1 who is supporting me at the moment from a private hospital, but again proving difficult to have a face to face appointment.
Thank you for your response!

Sorry to hear you are having such a rough ride @Abs23 with the pandemic making your introduction to T1 much more chaotic and disorganised than it would have been.

It sounds as if you have been given fairly conservative fixed doses to begin with, possibly because your HCPs are not sure how much of your own insulin you may still be producing.

Have you been advised how much carbohydrate you should be aiming for to ‘match‘ your meal doses? When using fixed doses this is an important part of the puzzle, and even though your doses are the same each meal you may find you need to aim for a different carb total for different meals because of changes to insulin sensitivity during the day.

If the meal and the dose are balanced then your blood glucose will be back to more or less where it was before the meal by approx 4-5 hours afterwards.

So the first thing to do is to start working out how many carbs you are eating, and to see whether you need fewer carbs to match your fixed doses. If you eat a few fewer carbs than that then your high BG will gradually reduce over a day or two.

Alternatively, as @rebrascora suggests you could ask to be given guidance on adding extra insulin to correct your high BG more rapidly. But insulin is a powerful and potentially dangerous medication, so caution is advised in the early days 🙂

 

[Abs23]

Sorry to hear you are having such a rough ride @Abs23 with the pandemic making your introduction to T1 much more chaotic and disorganised than it would have been.

It sounds as if you have been given fairly conservative fixed doses to begin with, possibly because your HCPs are not sure how much of your own insulin you may still be producing.

Have you been advised how much carbohydrate you should be aiming for to ‘match‘ your meal doses? When using fixed doses this is an important part of the puzzle, and even though your doses are the same each meal you may find you need to aim for a different carb total for different meals because of changes to insulin sensitivity during the day.

If the meal and the dose are balanced then your blood glucose will be back to more or less where it was before the meal by approx 4-5 hours afterwards.

So the first thing to do is to start working out how many carbs you are eating, and to see whether you need fewer carbs to match your fixed doses. If you eat a few fewer carbs than that then your high BG will gradually reduce over a day or two.

Alternatively, as @rebrascora suggests you could ask to be given guidance on adding extra insulin to correct your high BG more rapidly. But insulin is a powerful and potentially dangerous medication, so caution is advised in the early days 🙂

Hello!
Yes I’m still waiting for all the appropriate tests to be carried out. I also have not been given any advice on carb intake/ carb counting and adjusting to suit my insulin units.
I have finally been referred to the specialists and will be having a community nurse visit soon, to go through all of the things I need and so that I can start adjusting my Novorapid according to my meals.
Also, regarding your comment further up the thread about not cutting out carbs.. I have a thyroid condition that means I have to have carbs in my diet and this is why I’m waiting for specialist advice as I need to find a balance for both!
Thank you for your response!

 

[everydayupsanddowns]

I have a thyroid condition that means I have to have carbs in my diet and this is why I’m waiting for specialist advice as I need to find a balance for both!

Ah OK. That may complicate things on your current doses, because a BG of 18mmol/L suggests your insulin doses are falling significantly short of the carbs you are eating.

Counting the carbs you are eating and maybe trying a 25% reduction if that suits your thyroid might help as a start?