consultant

[teddybear74]

after a visit in February to see my consultant he mentioned "if i do as i am told within the year i would go on a pump" what does this mean please as i have mentioned a few times to the dsn and have not heard anything back. i have asked my consultant a few weeks back and he said that due to my cpeptide reading last time i am still making my own insulin but obviously not enough to control my sugars but never mentioned again about pump. so im stumped

can anyone help me understand my reading are all over the pace despite me carb counting and changing my ratios. if i change them any more then ill be having 1:1 and i have increased my background as well

 

[Juicyj]

after a visit in February to see my consultant he mentioned "if i do as i am told within the year i would go on a pump" what does this mean please as i have mentioned a few times to the dsn and have not heard anything back. i have asked my consultant a few weeks back and he said that due to my cpeptide reading last time i am still making my own insulin but obviously not enough to control my sugars but never mentioned again about pump. so im stumped

can anyone help me understand my reading are all over the pace despite me carb counting and changing my ratios. if i change them any more then ill be having 1:1 and i have increased my background as well

Sounds like this was said in a 'literal' sense so I wouldn't read too much into it, just keep what you are doing, however keep pushing too for the pump, so lots of nudges and reminders and just refer to your consultant said you would be on a pump within a year, as it does take effort on your part to ensure this happens.

The fact you are putting in alot of work to manage your levels shows you are working hard at this, a pump would therefore 'improve your quality of life' and this is a key criteria from the NICE guidelines in regards to gaining pump access, so keep on at your team as it will help you if using a pump.

 

[teddybear74]

Sounds like this was said in a 'literal' sense so I wouldn't read too much into it, just keep what you are doing, however keep pushing too for the pump, so lots of nudges and reminders and just refer to your consultant said you would be on a pump within a year, as it does take effort on your part to ensure this happens.

The fact you are putting in alot of work to manage your levels shows you are working hard at this, a pump would therefore 'improve your quality of life' and this is a key criteria from the NICE guidelines in regards to gaining pump access, so keep on at your team as it will help you if using a pump.

thanks

i have no idea what the nice guidelines are

my average glucose is 9.5 and flits between 30% and 65% in range daily i am never between 4-7 in the morning or before meals and i have a very active job online shopper. I have said to them i may as well give up on everything as its getting me down

 

[Juicyj]

Hi @teddybear74 Sounds like your suffering burnout, micro managing your control can easily cause you to feel worn down. It's quite common with type 1 to feel this way. It's good to practice some self care, like getting exercise, talking to others, lots of sleep, meditation if you can.

NICE guidelines are the criteria health care professionals use when establishing requirements for pump therapy, worth a read if you can:

Overview | Continuous subcutaneous insulin infusion for the treatment of diabetes mellitus | Guidance | NICE

www.nice.org.uk

- Call your team up today and get some support, you need to make sure you are on their radar, they can help with adjustments and support, but you do need to ask for help. Try also joining any local type 1 support groups, look at Facebook to see if there are any nearby, we have one in Worcs, there's a couple in London and one in Birmingham for anyone connected to type 1 and they are a great help to just chat to others who get it. Take care x

 

[teddybear74]

Hi @teddybear74 Sounds like your suffering burnout, micro managing your control can easily cause you to feel worn down. It's quite common with type 1 to feel this way. It's good to practice some self care, like getting exercise, talking to others, lots of sleep, meditation if you can.

NICE guidelines are the criteria health care professionals use when establishing requirements for pump therapy, worth a read if you can:

Overview | Continuous subcutaneous insulin infusion for the treatment of diabetes mellitus | Guidance | NICE

www.nice.org.uk

- Call your team up today and get some support, you need to make sure you are on their radar, they can help with adjustments and support, but you do need to ask for help. Try also joining any local type 1 support groups, look at Facebook to see if there are any nearby, we have one in Worcs, there's a couple in London and one in Birmingham for anyone connected to type 1 and they are a great help to just chat to others who get it. Take care x

thanks i have just sent a message to the dsns and i am on a few type 1 groups but they seem to be in america even the ones that say uk not sure why or how but i will get searching. im going on holiday in a few weeks so hopefully i can chill x

 

[Juicyj]

thanks i have just sent a message to the dsns and i am on a few type 1 groups but they seem to be in america even the ones that say uk not sure why or how but i will get searching. im going on holiday in a few weeks so hopefully i can chill x

Do tell them you are struggling and need help though, don't be scared of revealing how much it's impacting you as they are there to help x

 

[teddybear74]

Do tell them you are struggling and need help though, don't be scared of revealing how much it's impacting you as they are there to help x

i was hoping to run something by you all i hope this is ok

last time i saw Kash he mentioned that if i do as i am told then within a year i maybe able to go on a pump. i am not sure what that means to be honest and hoping someone can clarify as nothing has been documented just what he said

my hba1c has gone from 58-66 in 4 months and my readings are all over the place despite me changing my ratios and increasing background my diet is pretty good so i just dont know what else i can do. my cpeptide was way high higher than it has ever been in feb so not sure as to why. i am active so i have no idea why i cant grasp getting things in range. i am just exhausted and fed up

that is what i have sent them they will probably reply saying i need to call in not always helpful as i am partially deaf to

 

[Tony337]

Hi
I get why you are fed up if your control is not where you want it to be.
I am not on a pump nor do i want one.
I don't see specialists or a DSN.

If you put me on the spot and asked me how i manage my own care and achieved a hba1c last week of 39 or 5.7 then my answer would be....

Free style libre 4mm needles and 50 years of experience.

I analyse the data on my libre to the nth degree.
Set the alarms accordingly and having needles where you don't feel a thing and can whip out your pen anywhere and anywhen.
I recall the old days of drawing up your own insulin and having needles like harpoons so really really appreciate the advancements in diabetes tech.
Years ago i wouldn't have taken 2 unit of fast acting insulin to correct my levels as my injection sites were already sore as were my fingers.

No more.

I do hope you get my point.....embrace what you've got whilst waiting for a pump and whilst you may be busy eventually you will see an improvement and when you do celebrate and congratulate yourself!

I wish you well

Tony

 

[Juicyj]

my hba1c has gone from 58-66 in 4 months and my readings are all over the place despite me changing my ratios and increasing background my diet is pretty good so i just dont know what else i can do. my cpeptide was way high higher than it has ever been in feb so not sure as to why. i am active so i have no idea why i cant grasp getting things in range. i am just exhausted and fed up

It's clear that all of this is getting you down, it's literally taking the bull by the horns metaphorically speaking.. Tony's point is very valid that we do ultimately have to take ownership and manage this as well as we can ourselves. I only lean on my DSN if I need to change insulin or tech, I also email her as I know she'll respond, rather than waiting for a call back. Your C peptide result is just a marker, your key guides are your Time in Range TIR and HbA1c, as well as your daily bg readings, TIR should be around 70% and your HbA1c around 48 mmol (or 6.5%).

Here's what I would do in your shoes, firstly do some basal fasting tests, see if your background ratio is correct, it underpins everything getting your basal right: https://www.mysugr.com/en/blog/basal-rate-testing/

What fast acting insulin are you using ? Both using the right carb/insulin ratio is key but so is timing of taking the fast acting insulin, so for example with Novorapid taking your bolus approx 20 mins early helps minimise the post prandial spike of your glucose levels,

If my levels start to rise above 12 mmol/l I will often exercise to bring it down rather than take a correction.

Don't feel disheartened though my recent HbA1c came back at 58 my highest in over 6 years, through this I discovered my fast acting insulin wasn't doing what I needed it to do so am now on Ljumjev which starts to work immediately and has stopped me from spiking, I am now around 80% TIR and know I will be aiming for around 50-52 on my next HbA1c, it's always work in progress but it's having the knowledge and confidence to know where to start and what to change.

 

[teddybear74]

It's clear that all of this is getting you down, it's literally taking the bull by the horns metaphorically speaking.. Tony's point is very valid that we do ultimately have to take ownership and manage this as well as we can ourselves. I only lean on my DSN if I need to change insulin or tech, I also email her as I know she'll respond, rather than waiting for a call back. Your C peptide result is just a marker, your key guides are your Time in Range TIR and HbA1c, as well as your daily bg readings, TIR should be around 70% and your HbA1c around 48 mmol (or 6.5%).

Here's what I would do in your shoes, firstly do some basal fasting tests, see if your background ratio is correct, it underpins everything getting your basal right: https://www.mysugr.com/en/blog/basal-rate-testing/

What fast acting insulin are you using ? Both using the right carb/insulin ratio is key but so is timing of taking the fast acting insulin, so for example with Novorapid taking your bolus approx 20 mins early helps minimise the post prandial spike of your glucose levels,

If my levels start to rise above 12 mmol/l I will often exercise to bring it down rather than take a correction.

Don't feel disheartened though my recent HbA1c came back at 58 my highest in over 6 years, through this I discovered my fast acting insulin wasn't doing what I needed it to do so am now on Ljumjev which starts to work immediately and has stopped me from spiking, I am now around 80% TIR and know I will be aiming for around 50-52 on my next HbA1c, it's always work in progress but it's having the knowledge and confidence to know where to start and what to change.

im on aprida fast acting and humulin I slow acting i inject 30 mins before i eat at home more difficult when i work. i have different ratios depending what time of day it is and within two weeks i had to change it twice due to spikes. my hba1c isnt as bad as it was in 2019 which i was shocked at 117 i have worked hard to get it down since then to 58 in october only for it to rise in feb to 66

 

[teddybear74]

Hi
I get why you are fed up if your control is not where you want it to be.
I am not on a pump nor do i want one.
I don't see specialists or a DSN.

If you put me on the spot and asked me how i manage my own care and achieved a hba1c last week of 39 or 5.7 then my answer would be....

Free style libre 4mm needles and 50 years of experience.

I analyse the data on my libre to the nth degree.
Set the alarms accordingly and having needles where you don't feel a thing and can whip out your pen anywhere and anywhen.
I recall the old days of drawing up your own insulin and having needles like harpoons so really really appreciate the advancements in diabetes tech.
Years ago i wouldn't have taken 2 unit of fast acting insulin to correct my levels as my injection sites were already sore as were my fingers.

No more.

I do hope you get my point.....embrace what you've got whilst waiting for a pump and whilst you may be busy eventually you will see an improvement and when you do celebrate and congratulate yourself!

I wish you well

Tony

im on dexcom one+ and im on 4mm needles

 

[Juicyj]

im on aprida fast acting and humulin I slow acting i inject 30 mins before i eat at home more difficult when i work. i have different ratios depending what time of day it is and within two weeks i had to change it twice due to spikes. my hba1c isnt as bad as it was in 2019 which i was shocked at 117 i have worked hard to get it down since then to 58 in october only for it to rise in feb to 66

Ok - so have you discussed insulins with your DSN and shown them what you are achieving with them, so can they access the Clarity data from your Dexcom ? You can share data from the app. The reason I suggest this is that they can therefore see patterns with your control, am unsure if you're confident in interpretating the data and they would see rather than tweaking ratios, whether these insulins are delivering the best outcomes for you. You would also benefit greatly from attending a DAFNE (dose adjustment for normal eating) as they can pick up on the info you share during the course to see if either adjustments or changes to insulin used and what would work best for you.

 

[Juicyj]

Also have you ever done any basal fasting tests ?

 

[teddybear74]

Ok - so have you discussed insulins with your DSN and shown them what you are achieving with them, so can they access the Clarity data from your Dexcom ? You can share data from the app. The reason I suggest this is that they can therefore see patterns with your control, am unsure if you're confident in interpretating the data and they would see rather than tweaking ratios, whether these insulins are delivering the best outcomes for you. You would also benefit greatly from attending a DAFNE (dose adjustment for normal eating) as they can pick up on the info you share during the course to see if either adjustments or changes to insulin used and what would work best for you.

i have done a dafne type course and they can see clarity they have just said to change ratos and the time im injecting

 

[teddybear74]

Also have you ever done any basal fasting tests ?

nope never

 

[Juicyj]

nope never

Ok great place to start then - use the link above as a guide and try splitting the testing over say 3 different times, you are already in a fasting state overnight so start with testing during the morning from waking till say 1pm and try a couple of times to see a pattern, same again for afternoon and again for evening.

Getting your basal ratio right is the foundation to your control and fasting tests will show where tweaks may need to be made, are you ok doing this ?

 

[teddybear74]

Ok great place to start then - use the link above as a guide and try splitting the testing over say 3 different times, you are already in a fasting state overnight so start with testing during the morning from waking till say 1pm and try a couple of times to see a pattern, same again for afternoon and again for evening.

Getting your basal ratio right is the foundation to your control and fasting tests will show where tweaks may need to be made, are you ok doing this ?

not really as i have no idea what to do and i have had a few hypos last few days one early hours and one when i was doing breakfast not sure why

 

[Juicyj]

Ok have a read through as it's quite straight forward: https://www.mysugr.com/en/blog/basal-rate-testing/

I will be honest if you do get a pump you will need to be clued up on basal fasting as it's necessary with the pump to ensure settings are right, a pump requires alot of work to get it set up, it's not a magic wand to good control, I have seen people get a pump and are immediately disillusioned with it as they don't get the results they expect and very often go back to MDI, pumps are only as good as the effort put into them, that's why getting the fundamentals right are so important, also get yourself a copy of 'Think like a pancreas' from Amazon, every type 1 should have this book, it explains everything you need to know about type 1 and managing it well.

In regards to hypos, they can behave like a yo-yo, so once you have one the liver can help by kicking out glucose but will need to restock and takes glucose from your blood so you can dip again later on which would explain your morning hypo, always go easy and run a fraction higher after a hypo event to give yourself a buffer, if your going low early hours then your basal needs adjusting as your taking too much, as a rule of thumb with nocturnal hypos I change basal if I see a pattern of 2 or more as you want to avoid them. With warmer weather our insulin needs do change, so something to be mindful of.