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struggling

kvetiny

kvetiny

Well-Known Member
Messages
147
Location
Derbyshire
Type of diabetes
Type 1
Treatment type
Insulin
Hello everyone,

I've had type 1 for 9 years now. Always had poor control. HBA1C is 68. Recently found out I have Maculopathy in one eye. I have had the libre for about a year now. Receiving it I thought it would help me control my blood sugars by keeping a close eye on it.
Recently managed to reduce my spikes from 20 down to 13 but I am experiencing at least 1 or 2 hypos everyday. My diabetes team have been more involved recently which is great but most of their advice is unhelpful and quite generic. Trying my best to improve things but seems like everything I do comes at a cost.
 
kvetiny said:
Hello everyone,

I've had type 1 for 9 years now. Always had poor control. HBA1C is 68. Recently found out I have Maculopathy in one eye. I have had the libre for about a year now. Receiving it I thought it would help me control my blood sugars by keeping a close eye on it.
Recently managed to reduce my spikes from 20 down to 13 but I am experiencing at least 1 or 2 hypos everyday. My diabetes team have been more involved recently which is great but most of their advice is unhelpful and quite generic. Trying my best to improve things but seems like everything I do comes at a cost.
Click to expand...

Im in the exact same boat. Had mine 14 years & had no issues up until now. Feel like it’s been abit of a rollercoaster up until now but the libre has changed everything. We have no choice now to try & stop the damage. Ironically my worst HBA1C has been 61. What they said about the Maculopathy you needing treatment?
 
Wanderer89 said:
Im in the exact same boat. Had mine 14 years & had no issues up until now. Feel like it’s been abit of a rollercoaster up until now but the libre has changed everything. We have no choice now to try & stop the damage. Ironically my worst HBA1C has been 61. What they said about the Maculopathy you needing treatment?
Click to expand...
 
They didn't say a lot, just that it's in my right eye and will return in 6 months time to the digital surveillance clinic. 2 years ago I had background retinopathy so I'm not really surprised. I have problems with my feet and legs but havent a clue what's going on there. Wasn't expecting complications at this stage but on the positive side it's really encouraged me to do much better.
 
kvetiny said:
They didn't say a lot, just that it's in my right eye and will return in 6 months time to the digital surveillance clinic. 2 years ago I had background retinopathy so I'm not really surprised. I have problems with my feet and legs but havent a clue what's going on there. Wasn't expecting complications at this stage but on the positive side it's really encouraged me to do much better.
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That’s not bad then at this stage. I was referred to the surveillance clinic every 3 months & on my first scan with them it instantly got referred to hospital. Waiting on the hospital to find out what’s happening next. If you have been on the libre a year it seems like you are already on it to change so that’s good.
 
Yes sure things will slowly get better. Caught covid at Christmas which completey messed things up for about 2 months. Feels like I am just slowly getting on top of things but like u said it's still a rollacoster most days.
 
Hiya, I was wondering if you keep a record of what foods you are eating or activity before the hypo's. It might be worth looking in to this. If high fat it takes longer to digest, leading to hypo soon after eating. If you are on one basal dose it might be worth speaking to your medical team about splitting it. Are your insulin to carb ratio's correct?
Just a few pointers that might help you a wee bit.
 
Hi, yes I'm making more effort noting food type carbs and insulin. Since I've spit my Lantus BD my spikes are more reduced. Done basal testing and still not sure correct amounts of Lantus to take. My ratio for Novarapid was 1/20. Recently increased it to 1/15. Tried 1/10 today and my sugars crashed an hour after eating.
 
I have reduced my carbs by at least 50% that seems to have made a difference. I've learnt so much from u good people on here.
 
kvetiny said:
Hello everyone,

I've had type 1 for 9 years now. Always had poor control. HBA1C is 68. Recently found out I have Maculopathy in one eye. I have had the libre for about a year now. Receiving it I thought it would help me control my blood sugars by keeping a close eye on it.
Recently managed to reduce my spikes from 20 down to 13 but I am experiencing at least 1 or 2 hypos everyday. My diabetes team have been more involved recently which is great but most of their advice is unhelpful and quite generic. Trying my best to improve things but seems like everything I do comes at a cost.
Click to expand...

I assume you are in insulin..

I have found The tighter control gets the more hypo risk there is because the margin for error is much smaller

Also insulin needs change over time so tweaking what you take may be needed

Also unexpected physical activity can cause your body to burn more

First place to start is with a basal test make sure your long acting insulin is just keeping you stable but not dropping your levels

Then check your bolus requirements by testing again something with a known number of carbs.. again you don’t want to be too low after 2 hours as the insulin has an effect for upto 5 hours

And from that point you can only keep checking your bg to try and make sure you catch lies before hypo

It will always be a balancing act and there will always be hypos but I think you can only do your best to try and prevent the risks of the constant highs
 
Yes on Novarapid and lantus. Best day today it's been between 6-10 mmols which is remarkable for me! I've been basal testing and think I may have the right amount of Lantus. I've split the Lantus which helps slightly. Increased my ratio for Novarapid. Still got some work to do to make sure I'm at the correct levels of insulin. The nurse said to me years ago I will get many more hypos with tighter control. To be honest I have lots of hypos and hypers constantly so I'm just reducing the high blood sugars and constantly tweaking and experimenting.
 
kvetiny said:
Yes on Novarapid and lantus. Best day today it's been between 6-10 mmols which is remarkable for me! I've been basal testing and think I may have the right amount of Lantus. I've split the Lantus which helps slightly. Increased my ratio for Novarapid. Still got some work to do to make sure I'm at the correct levels of insulin. The nurse said to me years ago I will get many more hypos with tighter control. To be honest I have lots of hypos and hypers constantly so I'm just reducing the high blood sugars and constantly tweaking and experimenting.
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I’m on a pump with cgm and still tweaking after 6 months.. and still have hypos because the control is tighter

Think that just a fact of life now
 
searley said:
I’m on a pump with cgm and still tweaking after 6 months.. and still have hypos because the control is tighter

Think that just a fact of life now
Click to expand...
The tighter my control the more flatter my blood sugars and the less I have hypos.
 
ert said:
The tighter my control the more flatter my blood sugars and the less I have hypos.
Click to expand...

That’s true for me when I’m at home or driving for hours .. I do however have a physical and unpredictable job.. so I can go do some hard work and crash afterwards if I’m not careful

Also towards the end of the working day if I have medium activity unstrapping the truck moving around yard doing the odd jobs that need doing by the time I get home and sit down waiting for my food to cook I can end up going low then
 
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