[Diabetes] General Chat and Support Thread

ddarcy

Meauldsegosha wrote: »

On the diabetes in Ireland facebook page, there are plenty who have got texts to attend for their vaccine. Not all have a Hba1c of over 58. Hospitals seems to be randomly picking people.

I saw my doctor in the last week and was told that they are looking at longevity as well with diabetes aside from the HBA1C. So if you’ve had it for 20+ years they could be adding you to the list to get done. Although not sure how widespread that is or if it is just Dublin hospitals doing it etc.

Meauldsegosha

ddarcy wrote: »

I saw my doctor in the last week and was told that they are looking at longevity as well with diabetes aside from the HBA1C. So if you’ve had it for 20+ years they could be adding you to the list to get done. Although not sure how widespread that is or if it is just Dublin hospitals doing it etc.

So much confusing information about the roll out. On the Facebook page there are a lot of recent diagnosed (2-4 years) with “good” HbA1c getting appointments. Some hospitals scheduling appointments, others saying they have heard nothing from the HSE yet. It seems to be a right mess.

uli84

ddarcy wrote: »

I saw my doctor in the last week and was told that they are looking at longevity as well with diabetes aside from the HBA1C. So if you’ve had it for 20+ years they could be adding you to the list to get done. Although not sure how widespread that is or if it is just Dublin hospitals doing it etc.

Interesting, got my outpatient appt end of April, guess I will ask...

CramCycle

My DSN asked me to go get my bloods done and a HbA1c done after our last phone appointment,. I said I'd pass as my time in range has been excellent. She agreed but felt that getting the HbA1c done was a good idea, hint hint. Maybe I am reading into to but that was my wildly speculative impression.

Johann.

Hi Guys,
Waiting on a call back from clinic, missed the call today. However somebody could potentially shed some light or had similar experience. At night I match my fast acting to my carbs using 1:10 ratio - and then take my 14 units of long acting as set by the hospital in November.

I am rarely below 7.5 in the mornings, having gone to bed between 5-9. Sometimes I would have a snack and wake up fine - within range. Some mornings I would wake up over 9, having had nothing since 7pm the night before - and having not eaten much carbs.

I have read of the dawn phenomenon etc, but I just think perhaps long acting isn't doing the job it's supposed to be doing - or perhaps not enough, but hesitant to vary too far. It's worth noting that throughout the day then my bloods are between 4-7 - but naturally a worried/hard on myself if it's not - i know i've a lot of learning to do & probably a little less worrying

Taeholic

Johann. wrote: »

Hi Guys,
Waiting on a call back from clinic, missed the call today. However somebody could potentially shed some light or had similar experience. At night I match my fast acting to my carbs using 1:10 ratio - and then take my 14 units of long acting as set by the hospital in November.

I am rarely below 7.5 in the mornings, having gone to bed between 5-9. Sometimes I would have a snack and wake up fine - within range. Some mornings I would wake up over 9, having had nothing since 7pm the night before - and having not eaten much carbs.

I have read of the dawn phenomenon etc, but I just think perhaps long acting isn't doing the job it's supposed to be doing - or perhaps not enough, but hesitant to vary too far. It's worth noting that throughout the day then my bloods are between 4-7 - but naturally a worried/hard on myself if it's not - i know i've a lot of learning to do & probably a little less worrying

Hi Johann,

I'm a bit confused by both your readings and your post which genuinely could just be me. So for clarity can I ask why are you taking fast acting insulin at night? Are you taking it before a late night snack? Or just before your main meals? Also what time are you injecting your long acting insulin?

I don't understand how you could go to bed with reading of between 7 and 9 having taken 14 units of insulin and have a fasting reading of above 7.5. That's a mystery to me but then again at times so is diabetes.

I found keeping a diary very useful when I first started on insulin and saw patterns that I could then call my clinic with to discuss. I certainly wouldn't do anything without them signing off on it but definitely no harm asking for advice.

Johann.

Taeholic wrote: »

Hi Johann,

I'm a bit confused by both your readings and your post which genuinely could just be me. So for clarity can I ask why are you taking fast acting insulin at night? Are you taking it before a late night snack? Or just before your main meals? Also what time are you injecting your long acting insulin?

I don't understand how you could go to bed with reading of between 7 and 9 having taken 14 units of insulin and have a fasting reading of above 7.5. That's a mystery to me but then again at times so is diabetes.

I found keeping a diary very useful when I first started on insulin and saw patterns that I could then call my clinic with to discuss. I certainly wouldn't do anything without them signing off on it but definitely no harm asking for advice.

Sorry, let me clarify - would take fast acting with my dinner - then long acting before bed.



So yeah, I would do bloods and reading would be between 7-9, only to wake up and could be 8-9.5, in some cases higher. It is then corrected during the day.


This seems to be the case whether I'd have a snack before bed or not, seems to be no rhyme nor reason to it.

Taeholic

Johann. wrote: »

Sorry, let me clarify - would take fast acting with my dinner - then long acting before bed.



So yeah, I would do bloods and reading would be between 7-9, only to wake up and could be 8-9.5, in some cases higher. It is then corrected during the day.


This seems to be the case whether I'd have a snack before bed or not, seems to be no rhyme nor reason to it.

My last appointment in the clinic the diabetes nurse told me if readings were steady 70% of the time she would be very happy. I was shocked by this because I like to hit good numbers, I think we're alike that way. But she is the professional she deals with this everyday.

Eg I took 8 units of long acting insulin 3 hours before bed (it suits my schedule best) I tested before bed 9.8 and my fasting reading was 4.8 this morning which is on the low side for me. Usually in the 5s or 6's. Genuinely I can't understand even taking Dawn phenomenon into account how yours are so high.

It does take time for the body to get used to the insulin and even out or at least that was my personal experience but I started on long acting for a year before fast acting.
Sorry I can't help but the best advice I can give is to call your clinic again tomorrow, ask for appointment whether it's video chat or in person. Sleep hugely effects my readings, the only thing I can think of is are you getting enough quality sleep?

CramCycle

If you have anyway of getting either a CGM or getting someone to do overnight BG tests, it might be a good starting point. Thanks to my CGM my levels settle 3 hours after I last eat and stay the same (once aslepp) all night through.

Johann.

CramCycle wrote: »

If you have anyway of getting either a CGM or getting someone to do overnight BG tests, it might be a good starting point. Thanks to my CGM my levels settle 3 hours after I last eat and stay the same (once aslepp) all night through.

Thanks - are CGM's available for free in Ireland?


J

Meauldsegosha

Johann. wrote: »

Thanks - are CGM's available for free in Ireland?


J

You’re diabetic team have to apply for it, if approved you can get it in the LTI. There is some criteria you have to meet to be approved eg hypo unaware.

calfmuscle

Definitely push for a cgm but it seams obvious you're rising over night. I was exactly the same on lantus and levemire. I got a cgm and went on tresiba and this problem went away. Talk to your team and get them to add redress the issue. 70 percent is great but why not have 80 to 90 percent with longer acting insulin and a cgm.

Johann.

Taeholic wrote: »

My last appointment in the clinic the diabetes nurse told me if readings were steady 70% of the time she would be very happy. I was shocked by this because I like to hit good numbers, I think we're alike that way. But she is the professional she deals with this everyday.

Eg I took 8 units of long acting insulin 3 hours before bed (it suits my schedule best) I tested before bed 9.8 and my fasting reading was 4.8 this morning which is on the low side for me. Usually in the 5s or 6's. Genuinely I can't understand even taking Dawn phenomenon into account how yours are so high.

It does take time for the body to get used to the insulin and even out or at least that was my personal experience but I started on long acting for a year before fast acting.
Sorry I can't help but the best advice I can give is to call your clinic again tomorrow, ask for appointment whether it's video chat or in person. Sleep hugely effects my readings, the only thing I can think of is are you getting enough quality sleep?

Sorry, didn't see this. Yeah, i'm hard on myself for sure, but spoke to the team today and they said they were happy enough with numbesrs .During the day they said was perfect, and waking up 1 or 1.5 above where i was when i went asleep doesn't bother them too much. e.g. if I was 7.5 going to bed and woke up 8.7 - they're ok with that, for now at least. They did suggest to up my long acting by 1 unit for a few days to see does this have an even better balance.

calfmuscle wrote: »

Definitely push for a cgm but it seams obvious you're rising over night. I was exactly the same on lantus and levemire. I got a cgm and went on tresiba and this problem went away. Talk to your team and get them to add redress the issue. 70 percent is great but why not have 80 to 90 percent with longer acting insulin and a cgm.

Yeah, this is exactly it. They were happy with numbers as I said before, my readings before meals are ALWAYS in range - 99% of the time, it's the morning that has been an issue - but they didn't seem too fussed.



Thanks for all the replies guys, i'll soldier on. Appreciate it

CramCycle

Johann. wrote: »

Sorry, didn't see this. Yeah, i'm hard on myself for sure, but spoke to the team today and they said they were happy enough with numbesrs .During the day they said was perfect, and waking up 1 or 1.5 above where i was when i went asleep doesn't bother them too much. e.g. if I was 7.5 going to bed and woke up 8.7 - they're ok with that, for now at least. They did suggest to up my long acting by 1 unit for a few days to see does this have an even better balance.

To be fair, most people would be fine with that and some non diabetics probably have similar fluctuations. If anything, the only improvement you could make is go to bed a bit lower. The only concern I would have is that your not gradually raising to that level, I used to go low and rebound every night but only realised this when we started doing overnight testing. Other people go high and come back down with whatever insulin they are using.

TLDR they are right, its a minor difference but I would like to know what goes on in between. Are you a heavy sleeper and if you are, could you get someone to do tests every 2 or 3 hours overnight?

Johann.

CramCycle wrote: »

To be fair, most people would be fine with that and some non diabetics probably have similar fluctuations. If anything, the only improvement you could make is go to bed a bit lower. The only concern I would have is that your not gradually raising to that level, I used to go low and rebound every night but only realised this when we started doing overnight testing. Other people go high and come back down with whatever insulin they are using.

TLDR they are right, its a minor difference but I would like to know what goes on in between. Are you a heavy sleeper and if you are, could you get someone to do tests every 2 or 3 hours overnight?

No, not a heavy sleeper so if don't see a change after small tweaking to long acting over the weekend , I'm going to do some tests every odd hour.

Taeholic

Johann. wrote: »

Sorry, didn't see this. Yeah, i'm hard on myself for sure, but spoke to the team today and they said they were happy enough with numbesrs .During the day they said was perfect, and waking up 1 or 1.5 above where i was when i went asleep doesn't bother them too much. e.g. if I was 7.5 going to bed and woke up 8.7 - they're ok with that, for now at least. They did suggest to up my long acting by 1 unit for a few days to see does this have an even better balance.

I totally understand where you're coming from about your Fasting sugars. I like to hit the target numbers too but we have to be careful not to drive ourselves mad either.

In fairness your readings are brilliant so well done on that. I'm glad you got to talk to your clinic, if they're happy then you doing great. The extra unit should get you to where you want to be

Johann.

Taeholic wrote: »

I totally understand where you're coming from about your Fasting sugars. I like to hit the target numbers too but we have to be careful not to drive ourselves mad either.

In fairness your readings are brilliant so well done on that. I'm glad you got to talk to your clinic, if they're happy then you doing great. The extra unit should get you to where you want to be

Thanks.


Tbh I had gotten on with it since diagnosis and didn't get too frustrated by it all - took it in my stride, but past week had been tough, or more so i was tough on myself. Plus an article online about a poor fella my age in the Naul who is going blind having not attended his screenings, put the ****s up me despite registering a few weeks ago.

Taeholic

Johann. wrote: »

Thanks.


Tbh I had gotten on with it since diagnosis and didn't get too frustrated by it all - took it in my stride, but past week had been tough, or more so i was tough on myself. Plus an article online about a poor fella my age in the Naul who is going blind having not attended his screenings, put the ****s up me despite registering a few weeks ago.

Sorry upon reflection I may have been talking to myself there. That's a frightening story alright I understand why it spooked you. I hope the extra unit works for you. Take care

banjobongo

hi guys
quick question, my bucket to store my collected needles is now full. I just called the usual medical centre I use to get rid of the needles and collect a new bucket, Southhill Medical centre in Limerick, to check if they are open as usual, but the phone keeps running out, anybody know if they are open and if not, what to do to dispose of used needles/sharps?

gerrybbadd

Just back after receiving the AstraZeneca vaccine there in Sligo.

Fantastic service, very well handled by all there. Jab itself is pretty painless, the flu jab was worse!

banie01

banjobongo wrote: »

hi guys
quick question, my bucket to store my collected needles is now full. I just called the usual medical centre I use to get rid of the needles and collect a new bucket, Southhill Medical centre in Limerick, to check if they are open as usual, but the phone keeps running out, anybody know if they are open and if not, what to do to dispose of used needles/sharps?

No clue if they are open or not, but perhaps give HSE live a try?
Their webchat is always fairly good for stuff like that.

banjobongo

banie01 wrote: »

No clue if they are open or not, but perhaps give HSE live a try?
Their webchat is always fairly good for stuff like that.

thanks, but Im afraid I tried them adn they were not any good, she know nothing about either the centre or about what diabetes patients should do with their used sharps.

Anybody else have this problem (ie getting rid of their used sharps)?

banie01

banjobongo wrote: »

thanks, but Im afraid I tried them adn they were not any good, she know nothing about either the centre or about what diabetes patients should do with their used sharps.

Anybody else have this problem (ie getting rid of their used sharps)?

If you are stuck for a bucket, I'm in Limerick city and have one that is seeing near zero use since I stopped my insulin and went onto libre.
It's probably a 3rd full, but if you are stuck it's yours.

robinph

gerrybbadd wrote: »

Just back after receiving the AstraZeneca vaccine there in Sligo.

Fantastic service, very well handled by all there. Jab itself is pretty painless, the flu jab was worse!

I'm now two weeks in after the first dose of Astra Zeneca.

Other than the first night where I has all over body aches and chills I didn't have any symptoms after that, well not that any normal people would notice. I did have erratic blood sugars for a few days though with wild fluctuations from hyper to hypo and back again.

Wonder what symptoms a "normal" person would get in that situation if their pancreas is just dealing with it without their knowledge?

banjobongo

banie01 wrote: »

If you are stuck for a bucket, I'm in Limerick city and have one that is seeing near zero use since I stopped my insulin and went onto libre.
It's probably a 3rd full, but if you are stuck it's yours.

many thanks!
I tried Southhil medical centre again this afternoon and it turns out that they are open as usual, they just handed answered any calls this morning, so Im sorted but thanks again for the offer!

gerrybbadd

robinph wrote: »

I'm now two weeks in after the first dose of Astra Zeneca.

Other than the first night where I has all over body aches and chills I didn't have any symptoms after that, well not that any normal people would notice. I did have erratic blood sugars for a few days though with wild fluctuations from hyper to hypo and back again.

Wonder what symptoms a "normal" person would get in that situation if their pancreas is just dealing with it without their knowledge?

I'm into day 2 now here. Was in bits yesterday, like a flu coming on, headache like I was dehydrated, and as you say, erratic blood sugars.

Today, bloods are still high, (had a hypo yesterday after very high sugars a couple hours before), but other than that, feel relatively normal. Arms still a little tender mind. It got very sore the night of the injection, all down the left side.

ddarcy

gerrybbadd wrote: »

I'm into day 2 now here. Was in bits yesterday, like a flu coming on, headache like I was dehydrated, and as you say, erratic blood sugars.

Today, bloods are still high, (had a hypo yesterday after very high sugars a couple hours before), but other than that, feel relatively normal. Arms still a little tender mind. It got very sore the night of the injection, all down the left side.

Yeah I’m on day 2 and everything is back to normal. Yesterday was a disaster though. I woke up with a slight headache and found it difficult to move (but once you got over that hump it started to get better). I’ve the pump in auto mode so my blood sugars really haven’t been out of whack. I was expecting a sore arm but had none of that. Definitely the day after is not fun (my diabetic nurse said she has the same experience as well too / coincidently has to contact her about something else and it came up)

banie01

I'm in with my diabetes team this afternoon.
I'm hoping that the data I have from 40days libre use with zero insulin and hba1c staying in the sub 48 range will help me convince them that moving me to libre on my LTI is a viable option.

Will let ye know how I get on

banie01

No joy with getting the Libre on LTI.
Endo has said the prescribing is still very restricted and subject to pcrs review rather than a nod and a wink.

He did review my libre data to date and was happy to use the glimp estimated Hba1c as this visit's number!

Spent a bit of time going over the graphs, he has recommended going with a food diary in conjunction with the libre for the next month or so.
Identify what spikes me and then use that info to manage spikes better.

My recovery from highs is fairly quick, and of I can better manage those I can ditch the libre rather than keep self funding.

So it would seem barring the narrow range of T1's currently eligible, other type 1's and other types of diabetes will likely not be added to the eligible cohorts for the foreseeable.

kippy

banie01 wrote: »

No joy with getting the Libre on LTI.
Endo has said the prescribing is still very restricted and subject to pcrs review rather than a nod and a wink.

He did review my libre data to date and was happy to use the glimp estimated Hba1c as this visit's number!

Spent a bit of time going over the graphs, he has recommended going with a food diary in conjunction with the libre for the next month or so.
Identify what spikes me and then use that info to manage spikes better.

My recovery from highs is fairly quick, and of I can better manage those I can ditch the libre rather than keep self funding.

So it would seem barring the narrow range of T1's currently eligible, other type 1's and other types of diabetes will likely not be added to the eligible cohorts for the foreseeable.

You may have answered this earlier in the thread so apologies but can you advise how much the libre is costing you? Initial cost, consumables etc and that type of thing?
I am struggling to keep my weight at a manageable level with a few factors impacting this but I'd like to see whether a GCM is practical for me as I feel it would help.
Out of interest I wonder what the cost of a GCM annually is versus the cost of the strips for a regular monitor?
I hope to raise the issue with some local politicians over the coming months.