Newbie type 1 advice

[helli]

I hope so feels like my whole world was just tipped on it’s head, and yeah that’s a good idea thank you just never know what To do because they say eat well but it’s too much insulin , thank you for all the advice xx

Take care with the “it’s too much insulin” thoughts.

You may be taking more insulin than you need for the carbs you are eating which is a consequence of being on fixed doses.
But i have also read some people with Type 1 feel their insulin doses are “too high”. Remember, the correct amount of insulin is the amount you need to stop your blood sugars going too high or too low. For some, the number of units of insulin may be single digits, for some in may it 3 digits (over 100). It will take some time to work out what you need … and then changes.

I say this because some people with insulin resistance (typically, type 2 and, usually on other websites) may preach about low carb and instil a fear of insulin.

With Type 1, it is about learning how to dose insulin for the same “healthy diet” as you would eat without diabetes.

 

[Inka]

Absolutely @helli We all need the amount of insulin we need. Type 1s can eat a pretty normal diet. The job is to ‘be your own pancreas’ and get the insulin as right as possible for the food.

It’s a very different condition to Type 2.

 

[RoseH]

Th

Type 1 seems to be finding the balance of carbs and insulin dose and it is early days for you still so until you are able to find that balance you have to keep safe even if that means eating more carbs. Those carbs aren't necessarily going to be 'unhealthy'.
It is always going to be a learning process as people who have had Type 1 diabetes for many years will testify.
You will get lots of support on your journey from people here so just ask any questions and touch base with how you are getting on with any changes you make

Thank you so much ❤️

 

[Pumper_Sue]

Rose,
just a thought for you (dangerous I know) You said in an earlier post you are fine as long as you sit in a chair doing nothing.
9 times out of 10 when this is the case your basal is wrong as being a very busy Mum you can not do this very often. So perhaps look at dropping basal insulin by a couple of units at breakfast time. Make no other changes to your insulin for a few days and see how it goes. If you need to snack then do so.

As I always say Rome wasn't built in a day. You will get there slowly but surely and learn something new everyday.

Do you actually count the carbs on your plate at meal times? I know you said you had learnt to carb count 🙂 So if you have counted how much is on your plates is it exactly the same carbs every meal time?

 

[RoseH]

Rose,
just a thought for you (dangerous I know) You said in an earlier post you are fine as long as you sit in a chair doing nothing.
9 times out of 10 when this is the case your basal is wrong as being a very busy Mum you can not do this very often. So perhaps look at dropping basal insulin by a couple of units at breakfast time. Make no other changes to your insulin for a few days and see how it goes. If you need to snack then do so.

As I always say Rome wasn't built in a day. You will get there slowly but surely and learn something new everyday.

Do you actually count the carbs on your plate at meal times? I know you said you had learnt to carb count 🙂 So if you have counted how much is on your plates is it exactly the same carbs every meal time?

Thank you I’m gonna leave a voicemail for my diabetes team to ring me Monday and I’ll mention these changes , and I do count just to make a note for practice , and it ranges at about 40 carbs usually but like now I had my tea at 6 and 5 units of insulin and by now I’m reading at 3.1 because I’ve got the kids ready for bed and it’s dropped my sugars

 

[Pumper_Sue]

Thank you I’m gonna leave a voicemail for my diabetes team to ring me Monday and I’ll mention these changes , and I do count just to make a note for practice , and it ranges at about 40 carbs usually but like now I had my tea at 6 and 5 units of insulin and by now I’m reading at 3.1 because I’ve got the kids ready for bed and it’s dropped my sugars

It's no wonder you go hypo with that carb ratio. It's far to much insulin for your carb intake at present. For every 10 carbs that I eat it's anything from 1 unit to every 20 carbs down to 1 unit every 16 carbs. We are all different though and as exercise lowers blood sugars it would stand to reason that you need less insulin for your evening meal, or if you can eat a bit more.

 

[rebrascora]

5 units of insulin for 40g carbs is a bit heavy handed for a starting dose. They usually start you off on 1:10 so 1unit of insulin for 10g carbs and then adjust your ratio from there if necessary, so maybe think about eating a chocolate digestive after your meal to bump the carb content up a bit and it may well be about right.

I would agree with @Inka

@RoseH If you’re anxious about changing your insulin doses, then you could always approach it from the other end - ie change your food/carbs. So, leave your meal dose the same but increase the amount of carbs you eat for that meal.

You could also experiment with between meal snacks if you feel they’d help.

I promise it does get easier gradually.

You would be best just upping your carb intake to 50 ish grams per meal and see how you get on with that. Your DSN really should have given you an indication of how many carbs to aim for per meal if they were going to insist on fixed doses.

 

[Jago]

It’s tough. For me control and ownership are key to how I deal with my T1D. I was diagnosed in January and I was desperate for control and information - it was my way of dealing with my diagnosis, the number of finger prick tests I was doing was insane! I was told about carb counting the day i was diagnosed - and roughly a week later was adjusting my bolus and a few weeks later my basal. The problem with set doses is that they don’t account for what you are doing or what you are eating and or any variety in your life-style or diet. This applies to both basal and bolus. Set doses also don’t really account for the honeymoon period, or a whole host of other factors that can impact how your body deals with insulin. I would like to think your diabetes team would be more open to you adjusting your doses. Perhaps you need to show to them that you know what you are talking about. Knowledge is power.

It’s been said by others - but this your diagnosis - you like the rest of us T1Ds will probably be living with this for the rest of your life and it’s really important to remember that you are the person that knows your body and your diabetes best- perhaps more importantly, you are the person that has to live with the consequences of your insulin regime. Short and long term. So even if you don’t decide to insist on control with your diabetes team - at least they demand they explain and justify why they are telling you what they are telling you . That way you are informed. I remember on NCT my wife was told think “BRAIN” (benefits risks alternatives intuition nothing) every time a doctor/nurse told her something and only make a decision after querying the doctor accordingly … a part of me thinks that if one is encouraged to ask these questions over a process (giving birth) that humanity has been doing for it’s entire existence - then there is no harm in doing so with regards to treatment that has only existed for 100 odd years, especially as it is one in which developments and progress are constant.

All that said there were two things that really helped me “get control” . Both of them are related to knowledge - I found that the more i knew the more comfortable i was both with T1D and with talking to my diabetic team. The part of getting knowledge was research - learning more about diabetes and how people deal with it was key to my process. The internet is great - but i think there is still a place for real books - I recommend two:

Take Control of Type 1 Diabetes - Dr David Cavan

think like a pancreas - Gary Scheiner

The second thing that really helped me was getting a freestyle Libre, there are other options of CGM/FlashGM available - but these devices provide granularity and monitoring not available with with finger prick tests. They enabled me to better understand my data - to really “know” - I was able to see the effect of certain foods and quickly check the accuracy of my carb counting.

My Libre allows me to match what my body was telling me to near realtime results.
Consequently I was able to see quickly if I had over or under dosed and i was able to see if
my bolus or my basel was too high. The libre (which can be available on the NHS) also has alarms that warn me if I am heading for a hypo or hyper - which was a huge relief especially when looking after my son.

The final thing - which I got from reading - both books and forums like this - is that you won’t always get it right - your levels will not always be perfect. Realising this was important for my mental wellbeing - and perhaps more relevantly for your case, it allowed me to freedom to experiment a bit with my dosing. That, and carrying a tin of 8 jelly-babies with me at all times!

Anyway - best of luck on your journey!

 

[trophywench]

Dr David Cavan is the very same person who brought BERTIE carb counting and dose adjustment training online to the masses - when he was Head Honcho at Bournemouth Diabetes and Endocrine Centre a few decades ago - hence he really is pretty damn good at his stuff, all in all. Some of us on DSF Beta tested the online course for him before it was publicly launched.

I'd start doing it if you can - then you can say to your 'lot' that you've done it and add 'because I simply couldn't sit around in the first place - let alone for as long as you required me to, with multiple hypos all the while!'

 

[RoseH]

It’s tough. For me control and ownership are key to how I deal with my T1D. I was diagnosed in January and I was desperate for control and information - it was my way of dealing with my diagnosis, the number of finger prick tests I was doing was insane! I was told about carb counting the day i was diagnosed - and roughly a week later was adjusting my bolus and a few weeks later my basal. The problem with set doses is that they don’t account for what you are doing or what you are eating and or any variety in your life-style or diet. This applies to both basal and bolus. Set doses also don’t really account for the honeymoon period, or a whole host of other factors that can impact how your body deals with insulin. I would like to think your diabetes team would be more open to you adjusting your doses. Perhaps you need to show to them that you know what you are talking about. Knowledge is power.

It’s been said by others - but this your diagnosis - you like the rest of us T1Ds will probably be living with this for the rest of your life and it’s really important to remember that you are the person that knows your body and your diabetes best- perhaps more importantly, you are the person that has to live with the consequences of your insulin regime. Short and long term. So even if you don’t decide to insist on control with your diabetes team - at least they demand they explain and justify why they are telling you what they are telling you . That way you are informed. I remember on NCT my wife was told think “BRAIN” (benefits risks alternatives intuition nothing) every time a doctor/nurse told her something and only make a decision after querying the doctor accordingly … a part of me thinks that if one is encouraged to ask these questions over a process (giving birth) that humanity has been doing for it’s entire existence - then there is no harm in doing so with regards to treatment that has only existed for 100 odd years, especially as it is one in which developments and progress are constant.

All that said there were two things that really helped me “get control” . Both of them are related to knowledge - I found that the more i knew the more comfortable i was both with T1D and with talking to my diabetic team. The part of getting knowledge was research - learning more about diabetes and how people deal with it was key to my process. The internet is great - but i think there is still a place for real books - I recommend two:

Take Control of Type 1 Diabetes - Dr David Cavan

think like a pancreas - Gary Scheiner

The second thing that really helped me was getting a freestyle Libre, there are other options of CGM/FlashGM available - but these devices provide granularity and monitoring not available with with finger prick tests. They enabled me to better understand my data - to really “know” - I was able to see the effect of certain foods and quickly check the accuracy of my carb counting.

My Libre allows me to match what my body was telling me to near realtime results.
Consequently I was able to see quickly if I had over or under dosed and i was able to see if
my bolus or my basel was too high. The libre (which can be available on the NHS) also has alarms that warn me if I am heading for a hypo or hyper - which was a huge relief especially when looking after my son.

The final thing - which I got from reading - both books and forums like this - is that you won’t always get it right - your levels will not always be perfect. Realising this was important for my mental wellbeing - and perhaps more relevantly for your case, it allowed me to freedom to experiment a bit with my dosing. That, and carrying a tin of 8 jelly-babies with me at all times!

Anyway - best of luck on your journey!

Thank you so much for all the advice , I’ve got a Libre 2 sensor at the minute , my diabetes team wasn’t big on the idea of me getting one as they said it can be too much at the start with all the info on it but I’ve found it helpful especially with my anxiety I was pricking my finger far too much , the Libre’s readings can be a little off but all in all it’s been positive for me. Thanks for all the advice on the insulin too I’m going to speak to them as I can’t keep on like this , getting diabetes after being told over ans over by the doctors that all of the early symptoms I was feeling was anxiety and then going into a serious DKA was stressful enough and I just want a bit of control now not feeling like this everyday so I will defo take your advice and speak to them. Thank you again

 

[RoseH]

Dr David Cavan is the very same person who brought BERTIE carb counting and dose adjustment training online to the masses - when he was Head Honcho at Bournemouth Diabetes and Endocrine Centre a few decades ago - hence he really is pretty damn good at his stuff, all in all. Some of us on DSF Beta tested the online course for him before it was publicly launched.

I'd start doing it if you can - then you can say to your 'lot' that you've done it and add 'because I simply couldn't sit around in the first place - let alone for as long as you required me to, with multiple hypos all the while!'

I will have a look for an online course thank you very much x

 

[Pumper_Sue]

I will have a look for an online course thank you very much x

https://www.bertieonline.org.uk/Login.asp there you go 🙂

 

[everydayupsanddowns]

Yes it does seem as though your team are worried about you getting overwhelmed, and perhaps not really realising how anxious it is making you to just leave things as they are.

Good to hear that you will be chatting things through with them as you build your confidence to adjust your own doses.

Like others, when I was started on fixed doses, I was also given a fixed amount of carbohydrate to allow for each meal. I could eat whatever I liked (though was recommended to aim for things which released fairly slowly where possible), as long as it added up to my carb amount for that meal.

Once the balance was right it was a fairly flexible and workable system, and I eventually developed my own ‘rule of thumb’ adjustments for bigger meals, or those where the action of the insulin needed to be spread over a longer time period.

Good luck, and let us know how you get on 🙂

 

[PattiEvans]

I'm another one who beta-tested the Bertie online course. It's really very good. Hence when I did a physical course prior to getting my pump I already knew how to do it and had been practicing it for a long time.

Jago is right, this is one disease that cannot be controlled by anyone but yourself and you need to establish with your team that you are actively involved. My advice would be to do the course and then you'll be able to impress on them that you do know what you are talking about. Good luck.... my thoughts are with you.

 

[SB2015]

Being a mum is such a busy ‘job’ , so the flexibility of adjusting your doses shouod make your life a lot easier. It sounds like it is worth doing the Bertie course rather than waiting.

We each juggle with making adjustments through the day, and this does just become part of ‘normal’ days. It is however a lot to take on at the start, so I am glad that you have found the forum. There is such a wealth of experience to tap into.

let us know how you get on.