T1 diabetics thread

Author
Discussion

PositronicRay

Original Poster:

27,010 posts

183 months

Saturday 9th February 2019
quotequote all
Hi, just thought I'd start this to see if there's any interest.

I've been managing this condition for 40 yrs, still learning every day. Current HbA1c level 67mmol/mol. I know this is on the high side it's gone up from 60 2 yrs ago, so need to address it.

mike9009

6,999 posts

243 months

Saturday 9th February 2019
quotequote all
Hi

T1 diabetic here, diagnosed at 7 years old (suspect cause mumps). 38 years later still here despite some periods of poor control. I don't understand the new scales for HBA1C but mine was 7.9. <must try harder>

Had some complications along the way (mainly retinopathy to date).



Mike

PositronicRay

Original Poster:

27,010 posts

183 months

Saturday 9th February 2019
quotequote all
mike9009 said:
Hi

T1 diabetic here, diagnosed at 7 years old (suspect cause mumps). 38 years later still here despite some periods of poor control. I don't understand the new scales for HBA1C but mine was 7.9. <must try harder>

Had some complications along the way (mainly retinopathy to date).



Mike
https://www.diabetes.co.uk/hba1c-units-converter.html

Better than mine.

mike9009

6,999 posts

243 months

Sunday 10th February 2019
quotequote all
Thanks for that link. 8.3is not too bad. The two lads at work are both in the 6's which always makes me feel bad. Except the number of hypos they have seems abnormal. Almost daily or more frequently they seem to be grabbing a bottle of lucuzade.

I go 'low' perhaps once or twice a week - but have pretty good signals still.

PositronicRay

Original Poster:

27,010 posts

183 months

Monday 11th February 2019
quotequote all
mike9009 said:
Thanks for that link. 8.3is not too bad. The two lads at work are both in the 6's which always makes me feel bad. Except the number of hypos they have seems abnormal. Almost daily or more frequently they seem to be grabbing a bottle of lucuzade.

I go 'low' perhaps once or twice a week - but have pretty good signals still.
HbA1c are a useful measure but not the be all and end all. No good having a decent average if you're not stable.

mike9009

6,999 posts

243 months

Monday 11th February 2019
quotequote all
PositronicRay said:
mike9009 said:
Thanks for that link. 8.3is not too bad. The two lads at work are both in the 6's which always makes me feel bad. Except the number of hypos they have seems abnormal. Almost daily or more frequently they seem to be grabbing a bottle of lucuzade.

I go 'low' perhaps once or twice a week - but have pretty good signals still.
HbA1c are a useful measure but not the be all and end all. No good having a decent average if you're not stable.
Agreed - if they could do an average and standard deviation that would help to really understand how good (or bad) someones control is.

One thing we have often discussed is a blood sugar monitor which tells you the current value and whether the blood sugar is increasing or decreasing. (not sure how this would work??) But if you take your level a couple of hours after a meal and it is 14 - do you inject and if so how much? If the level was dropping or rising you would have two completely different answers as to how much insulin to take. (or just don't test too close after a meal or injection! smile )

Mike

PS there must be more T1s on here other than us two???

Feirny

2,518 posts

147 months

Monday 11th February 2019
quotequote all
Mine will be 22 years as of Wednesday. Current HBA1C is 6.1 in old money.

Suffered a detached retina caused by retinopathy which was casued by poor control over a number of years, now back under control and being pretty strict with it all.

PositronicRay

Original Poster:

27,010 posts

183 months

Monday 11th February 2019
quotequote all
mike9009 said:
PositronicRay said:
mike9009 said:
Thanks for that link. 8.3is not too bad. The two lads at work are both in the 6's which always makes me feel bad. Except the number of hypos they have seems abnormal. Almost daily or more frequently they seem to be grabbing a bottle of lucuzade.

I go 'low' perhaps once or twice a week - but have pretty good signals still.
HbA1c are a useful measure but not the be all and end all. No good having a decent average if you're not stable.
Agreed - if they could do an average and standard deviation that would help to really understand how good (or bad) someones control is.

One thing we have often discussed is a blood sugar monitor which tells you the current value and whether the blood sugar is increasing or decreasing. (not sure how this would work??) But if you take your level a couple of hours after a meal and it is 14 - do you inject and if so how much? If the level was dropping or rising you would have two completely different answers as to how much insulin to take. (or just don't test too close after a meal or injection! smile )

Mike

PS there must be more T1s on here other than us two???
What you want is a freestyle libre, only some NHS regions will fund it though.

If I'm @ 14, 2hrs after a jab, I'm often down to 5 or 6 before my next meal so don't risk correcting, sugar spikes are a problem so I've started to split my basal (lantus) 50/50 am/pm

Edited by PositronicRay on Tuesday 12th February 08:44

PositronicRay

Original Poster:

27,010 posts

183 months

Monday 11th February 2019
quotequote all
Feirny said:
Mine will be 22 years as of Wednesday. Current HBA1C is 6.1 in old money.

Suffered a detached retina caused by retinopathy which was casued by poor control over a number of years, now back under control and being pretty strict with it all.
Pretty tight control there Feirny. wavey

Feirny

2,518 posts

147 months

Monday 11th February 2019
quotequote all
PositronicRay said:
Feirny said:
Mine will be 22 years as of Wednesday. Current HBA1C is 6.1 in old money.

Suffered a detached retina caused by retinopathy which was casued by poor control over a number of years, now back under control and being pretty strict with it all.
Pretty tight control there Feirny. wavey
I had about 4-5 years at 12-15! So didn't have a choice but to sort it out.

mike9009

6,999 posts

243 months

Monday 11th February 2019
quotequote all
Feirny said:
PositronicRay said:
Feirny said:
Mine will be 22 years as of Wednesday. Current HBA1C is 6.1 in old money.

Suffered a detached retina caused by retinopathy which was casued by poor control over a number of years, now back under control and being pretty strict with it all.
Pretty tight control there Feirny. wavey
I had about 4-5 years at 12-15! So didn't have a choice but to sort it out.
Do you get many hypos? I have never been below 7 for my hba1c - 6.1 is the stuff of dreams for me , but I have never been higher than 8.5 (except in my teenage years! wink )


Do you have a fairly constant diet to achieve those levels or are you checking your sugars constantly?



Mike

Corso Marche

1,722 posts

201 months

Tuesday 12th February 2019
quotequote all
Type 1 for 21 years now. Another sibling is type 1 since the age of 9.

I need to get serious about exercise, weight gain over the last 2-3 years has been pronounced, and in the last 6 months my blood sugars are quite high in the morning, it seems my basal evening/overnight dose isn't performing as it used to. Daytime and evening are still ok though.

PositronicRay

Original Poster:

27,010 posts

183 months

Tuesday 12th February 2019
quotequote all
Corso Marche said:
Type 1 for 21 years now. Another sibling is type 1 since the age of 9.

I need to get serious about exercise, weight gain over the last 2-3 years has been pronounced, and in the last 6 months my blood sugars are quite high in the morning, it seems my basal evening/overnight dose isn't performing as it used to. Daytime and evening are still ok though.
It's a tricky one this, I tend to increase my basal, seems to sort it for a while, then night time hypos start, so peg it back to where it was.

Stress sends everything haywire too.

I've started splitting my basal now 50/50 am/pm. It took a couple of days to settle seems to be working, early days though.

Edited by PositronicRay on Tuesday 12th February 08:45

Feirny

2,518 posts

147 months

Tuesday 12th February 2019
quotequote all
mike9009 said:
Do you get many hypos? I have never been below 7 for my hba1c - 6.1 is the stuff of dreams for me , but I have never been higher than 8.5 (except in my teenage years! wink )


Do you have a fairly constant diet to achieve those levels or are you checking your sugars constantly?



Mike
I get a few, not a big amount. I live by a routine which helps massively and I'm also a bit of a fussy eater so I know how many units to inject per meal. I'm also fairly active now going to the gym 3-4 times a week etc.

8.5 HBA1C is still decent enough to say you've never been over it though!

bonerp

812 posts

239 months

Tuesday 12th February 2019
quotequote all
I lost my license 5 years ago due to retinopathy. Its taken this long for DVLA to allow me to take a driving assessment after them being told by eye specialists (their independent) and mine, and my gp etc that I'm ok to drive. So today I have my first lesson as a refresher and a couple more booked before my assessment!

I am so excited I can't tell you.

However this is a serious comment....keep your BG's in check. Work hard to get better control. I'm now on a pump and its made the world of difference to my control. Everyone has a right to better control and access to a pump. Being without a license for 5 years is hard. I have a 16 yr old daughter who has missed out as a result. Eat better, and medicate effectively. DVLA will use any excuse to keep you out of a car.

Corso Marche

1,722 posts

201 months

Tuesday 12th February 2019
quotequote all
I'm very interested in hearing your first hand experiences with the pump, and how you find it in comparison to frequent BG tests and insulin shots each day.

bonerp

812 posts

239 months

Tuesday 12th February 2019
quotequote all
Corso Marche said:
I'm very interested in hearing your first hand experiences with the pump, and how you find it in comparison to frequent BG tests and insulin shots each day.
I've been on a pump for about 11 years. I had a roche pump but now on Medtronic and I fund my own CGMS occasionally which helps to keep track through the night as to what is going on and allows me to make adjustments. It also shuts the pump down if it goes too low until it comes up again.

Its provides back ground (basal) and you just shoot up via the pump when I eat. If I have a busy day, I can turn it off or reduce basal. Beach days its easy to revert to a pen.

I find overall it is easier to manage increases as you tend to keep a more critical eye on bg's. In the last couple of days I had a 17 BG due to hitting a blood vessel. This is the first time for a long time its been high and rarely gets over 13 after food.

Good thing about the pump is that I can programme every step of the day which on lantus or suchlike you are restricted by its profile so you dont get the right insulin at the right time.

As I mentioned I had retinopathy quite bad but since 2010 its been stable.

mike9009

6,999 posts

243 months

Tuesday 12th February 2019
quotequote all
Feirny said:
mike9009 said:
Do you get many hypos? I have never been below 7 for my hba1c - 6.1 is the stuff of dreams for me , but I have never been higher than 8.5 (except in my teenage years! wink )


Do you have a fairly constant diet to achieve those levels or are you checking your sugars constantly?



Mike
I get a few, not a big amount. I live by a routine which helps massively and I'm also a bit of a fussy eater so I know how many units to inject per meal. I'm also fairly active now going to the gym 3-4 times a week etc.

8.5 HBA1C is still decent enough to say you've never been over it though!
My teenage years I spent a lot of the time above 10, so I am not quite the angel I may have portrayed. Since about the age of 19 I have been below 8.5 though.


Non-routine stuff is the Achilles heel of most diabetics I imagine. Weekends away, drinking and travelling for work have always been the tricky parts. During a week of working in the office I maybe getting lower than 7.0 average. With age I have found detecting higher blood sugars is not quite as refined as it used to be though - so ever more frequent blood testing compared to my 20's.


Mike

mike9009

6,999 posts

243 months

Tuesday 12th February 2019
quotequote all
PositronicRay said:
Corso Marche said:
Type 1 for 21 years now. Another sibling is type 1 since the age of 9.

I need to get serious about exercise, weight gain over the last 2-3 years has been pronounced, and in the last 6 months my blood sugars are quite high in the morning, it seems my basal evening/overnight dose isn't performing as it used to. Daytime and evening are still ok though.
It's a tricky one this, I tend to increase my basal, seems to sort it for a while, then night time hypos start, so peg it back to where it was.

Stress sends everything haywire too.

I've started splitting my basal now 50/50 am/pm. It took a couple of days to settle seems to be working, early days though.

Edited by PositronicRay on Tuesday 12th February 08:45
I am incredibly nervous of changing my long term insulin. About 12 years ago I started 'playing' with it, generally increasing it to try and drop my HBA1C. I then had a few fits early morning (upon waking) which was not pleasant for my wife. (cracked my head on the radiator by the bed, bitten tongue and lots of blood!). The emergency services came each time (3 times in all) but my blood sugar was 7.0 or so after each fit. Therefore, the fits were not linked to my diabetes. I explained this to various medical professionals, but I was diagnosed with epilepsy. I was banned from driving for 18 months and given epilepsy medication which I have since stopped taking. I returned my long acting insulin to 'normal' and the fits stopped. Now I don't mess with them.

Mike

NoNeed

15,137 posts

200 months

Tuesday 12th February 2019
quotequote all
mike9009 said:
Feirny said:
PositronicRay said:
Feirny said:
Mine will be 22 years as of Wednesday. Current HBA1C is 6.1 in old money.

Suffered a detached retina caused by retinopathy which was casued by poor control over a number of years, now back under control and being pretty strict with it all.
Pretty tight control there Feirny. wavey
I had about 4-5 years at 12-15! So didn't have a choice but to sort it out.
Do you get many hypos? I have never been below 7 for my hba1c - 6.1 is the stuff of dreams for me , but I have never been higher than 8.5 (except in my teenage years! wink )


Do you have a fairly constant diet to achieve those levels or are you checking your sugars constantly?



Mike
I wonder if you guys have a higher target like me, I have had the pump 6 years but kept my target to 8mmol due to risk of losing my driving licence, i have recently set a lower target as i was very stable so should be able to reack 7 without hypo risk.