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HBA1c 96 and type 1 over 30 years

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Just a update 41 now had diabetes since 10, was better controlled in younger years and got worse as got older, HBA1c was over 100 recently now down to 96 it's rough, changed to levimir and nova rapid, had sugars in 20s almost 90% of the time, over last 7 months, trying all sorts to get it down on bout 7 injections or more a day, can have 3 correctional doses just in the night, it's either hardly working or have a random crash that I can't explain, had that many ops and procedures on eye to save as much sight in right eye as they can, been constantly on all sorts of drops steroid drops and medication to keep the pressure down in eye bringing all sorts of nasty side effects, feeling rough, monthly eye injections in other eye, just been diagnosed for vitamin d deficiency, had a vitrectomy again the other week decided to have this one awake, woke up the other morning again with a bleed cannot see nothing again out of right eye, trying my best to get sugars down but apparently the steroid eye drops and other drops are effecting my diabetes, probably insulin resistant too, it certainly has it challenges, what iam saying is I've had diabetes over 30 years and still trying to figure it out, but more importantly when I first noticed changes in vision I used to lie awake each night frightened of all the complications going to set in and didn't really want to bother anyone, and any small change in my body or vision thought here we go again like a frightened kid, but see people on here with there concerns etc so if I can be of any help or advice to anyone feel free to ask anything and vice versa as iam still learning bout this after all these years
 
Hey man , Diabetic for 32 years now. I really didnt put that much emphasis on control 25 of these years. I was living the life. Then bam Macular edema. Life changed forever. But I learnt to take better control, although a long way to go still as I am on south asian diet which is very unpredictable . Anyhow. First thing you can do is start eating same or similar things for luch and dinner. You can take heavy stuff for lunch as you are.active through the day but try having a light meal at dinner time and same if possible most of the days . That will help you use same amount of insulin and stay in the target range, take vitamin d suppliments ,very important for retinopathy. Start your day with a glass or 2 of hot/warm water before having breakfast. Try to cut down on fat. Keto won't work if retinopathy is severe. Fat is a problem initially especially if you have it with some carbs as you won't be able to tell when your insulin will actually kick in as fat delays everything and it's a nightmare to time everything. Meditate before going to sleep. Trust me this will work . Will take couple of months to see difference. Download the headspace app. Hang ot there. All we can do is try and good things will happen. Also iltkaw vitamin c suppliments dont do anything crazy with ends up in heavy breathing. Lack of oxygen means bad for eyes. You will be okay .
 
Hi @DannyH and welcome to the forums. I am sorry you are having such a difficult time.

Are your diabetic team giving you much help? I personally found a cgm makes a massive difference to my life and diabetic control, though it sounds like you may be at a stage where you need to work on changing basal doses and ratios and maybe carb count more accurately??? And some people have great success on insulin pumps, though I am personally happy enough with a basal/bolus regime.

I still have days when my bg goes up and I just need extra insulin, and insulin doses seem more like an art then a science, but I stand by my cgm as being a life changing diabetic helper, a bit like it was when I got my first glucometer 40 years ago. And I absolutely maintain that it's never too late to improve diabetic control and reduce or diminish complications. And like you, I'm still learning about diabetic control (after 52 years, diagnosed aged 8).

Good luck with everything, and once again welcome. I look forward to reading your contributions to the forums.
 
DannyH said:
HBA1c was over 100 recently now down to 96 it's rough, changed to levimir and nova rapid, had sugars in 20s almost 90% of the time, over last 7 months, trying all sorts to get it down on bout 7 injections or more a day, can have 3 correctional doses just in the night
Click to expand...
This sounds like your basal dose might be off.
At what time do you take your Levemir? Many people find it doesn't cover the full 24 hours, Levemir is often taken twice a day so there won't be a gap.
 
DannyH said:
Just a update 41 now had diabetes since 10, was better controlled in younger years and got worse as got older, HBA1c was over 100 recently now down to 96 it's rough, changed to levimir and nova rapid, had sugars in 20s almost 90% of the time, over last 7 months, trying all sorts to get it down on bout 7 injections or more a day, can have 3 correctional doses just in the night, it's either hardly working or have a random crash that I can't explain, had that many ops and procedures on eye to save as much sight in right eye as they can, been constantly on all sorts of drops steroid drops and medication to keep the pressure down in eye bringing all sorts of nasty side effects, feeling rough, monthly eye injections in other eye, just been diagnosed for vitamin d deficiency, had a vitrectomy again the other week decided to have this one awake, woke up the other morning again with a bleed cannot see nothing again out of right eye, trying my best to get sugars down but apparently the steroid eye drops and other drops are effecting my diabetes, probably insulin resistant too, it certainly has it challenges, what iam saying is I've had diabetes over 30 years and still trying to figure it out, but more importantly when I first noticed changes in vision I used to lie awake each night frightened of all the complications going to set in and didn't really want to bother anyone, and any small change in my body or vision thought here we go again like a frightened kid, but see people on here with there concerns etc so if I can be of any help or advice to anyone feel free to ask anything and vice versa as iam still learning bout this after all these years
Click to expand...
Hi Danny, sorry your having such a tough time just now.

Of the 42 factors that can affect your BG, stress is one of the most prevalent factor. That stress can come from emotional issues or medical problems. Your body responds to stress by adopting "fight or flight" mode and introduces excess of glucose from wherever it can. Also steroids introduce an increase in insulin resistance. Either or both these matters might be worsening your circumstances.
 
DannyH said:
Just a update 41 now had diabetes since 10, was better controlled in younger years and got worse as got older, HBA1c was over 100 recently now down to 96 it's rough, changed to levimir and nova rapid, had sugars in 20s almost 90% of the time, over last 7 months, trying all sorts to get it down on bout 7 injections or more a day, can have 3 correctional doses just in the night, it's either hardly working or have a random crash that I can't explain, had that many ops and procedures on eye to save as much sight in right eye as they can, been constantly on all sorts of drops steroid drops and medication to keep the pressure down in eye bringing all sorts of nasty side effects, feeling rough, monthly eye injections in other eye, just been diagnosed for vitamin d deficiency, had a vitrectomy again the other week decided to have this one awake, woke up the other morning again with a bleed cannot see nothing again out of right eye, trying my best to get sugars down but apparently the steroid eye drops and other drops are effecting my diabetes, probably insulin resistant too, it certainly has it challenges, what iam saying is I've had diabetes over 30 years and still trying to figure it out, but more importantly when I first noticed changes in vision I used to lie awake each night frightened of all the complications going to set in and didn't really want to bother anyone, and any small change in my body or vision thought here we go again like a frightened kid, but see people on here with there concerns etc so if I can be of any help or advice to anyone feel free to ask anything and vice versa as iam still learning bout this after all these years
Click to expand...
Hi DannyH
Diabetes is a bit of a ****** isn't it. Not one day the same as the next. The only tip I can pass on is as your diabetes team suggest actually taken metformin mine did when they thought I was getting insulin resistent. Keep going mate. This is my first post on here and not sure what I am doing!!! Been type 1 for almost 30 years and would have loved this forum back then cos then I would have known I wasn't on my own cos i have struggled really badly over the years. Hope you get sorted. keep going.X
 
Where are your diabetes team in all this chaos?
The sugars you describe are rough and trying to chase them sounds like a bit of a rough (rollercoaster) ride.
Lots of great advice given above but in summary:
1 Nail your basal by 4 hourly testing (get a cgm (Freestyle Libre) with no carbs on board.
2 Reduce stress by whatever works for you whether that's walking, bingewatching Netflix or meditating...personally I haven't mastered the latter.
3 Lead a boring food life whilst you work out your correction doses and carb to insulin ratios.
Note that this doesn't guarantee perfection just a lot more predictability and may allow you to NOT to be in this doom loop between hypo/hyper.
You will be forever chasing your tail if you don't try and organise this stuff and I am assuming that is not what you want.
I don't know you and so can't know the reasons why you've been unable to get to this but do know that I only took it seriously after 20 years, 3 kids and a double vitrectomy so you are not alone with the struggle against 2nd law of thermodynamics namely that if you let it go, diabetes gets messy.
 
Was mentioned here before that there is a dedicated high insulin resistance unit in the NHS, don't remember which city it's located in but have seen it quoted.

I'd imagine you need a referral
 
Really appreciate you lot taking the time to put some ideas out there and support ect, never been a massive talker but trying all sorts to try and get better, I was on humilin M3 for years twice a day but gradually over the years got worse, left job around 15 years ago through anxiety depression, then took up drinking started smoking at 30, then pretty much a hermit and avoid alot of stuff ever since, but up to date, on levimir twice a day 17 and 17 morning and evening, then nova rapid, iam seeing the diabetic specialist nearly every couple weeks at the minute, iam on the libre 2 but she cannot manage to download it so may have to change readers, I quit smoking over a year ago and quit alcohol around 8 months back, coffee around three months ago not sure why coffee haha, trying my hardest to get better control the diabetic person I see says the steroid eye drops iam on could be having an impact along with something call diamox tablet and timilol eye drops and monopost, ive noticed my sugars come down in the afternoon and I have slightly more carbs to insulin IAM not sure if it's the interaction with the eye drops or the levimir could be overlapping, I've noticed I possibly need abit more in the morning and evening but also acknowledge scared to just keep upping insulin cos how iam feeling and live on my own worried it will crash, sometimes through the night I have a correctional dose of 2/3 units but feel really hungry so do have sometimes a pack of crisps iam not sure if these are false hypos or the steroid drops being in my system making me hungry alot, I eat lower carbs alot more, iam on approx 7 units in the morning aprox 4 at dinner and 6/7 at tea time. I have done stupid things like have lucazade when sugars look like there crashing fast even at 13/14,think it's a case when feel weird which is most days on the medication iam on, l feel safe if it's higher as concerned if i pass out there's no one here to help, I know sounds abit daft, sometime I can be at the eye clinic,diabetic clinic sometimes been a few times in a week, keeping all the appointments they throw at me, go to bed around 8 in the evening do listen to meditation etc before go to sleep, up at 7, trying to keep in routine, slot comes from being about braver with insulin and don't panic as much when I see them coming down, never been like it but I can get concerned if sugars are 14/15 which sounds absolutely stupid for someone who's been a type 1 for 31 years, I test alot both using a libre and and meter. IAM just trying to work things out, iam used to just doing 2 injections a day then eating regular, really sorry for the long winded post but I am genuinely really thankful for the support/advice cheers
 
Severe Insulin is at addenbrooke Hospital in Cambridge of which certain conditions must be present for referral
 
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