Could anyone offer any advice if possible please?

[JTL]

I get it whenever my bloodsugars go high and get all symptoms except vomiting. I'll do a ketone test now and report back, but this is almost a daily occurrence- the nurses are wanting to run me high to avoid the hypos, which means extreme discomfort for me.

You don't avoid a hypo by having a hyper ... that is not medicne .

 

[Maxy]

You don't avoid a hypo by having a hyper ... that is not medicne that is murder.

My ketones are 0.1.

I know it seems counterproductive. They tell me it's better to run in a bit high than to get lows. I'm losing patience with NHS by the day, struggle to get an appointment with my doctor for in a month advance even if I tell the surgery it's an emergency.

 

[Maxy]

with the amount of insulin I've done to cover the food I'm probably going to have a huge huge low later on.

 

[shaggy1974]

If your nurse is telling you it's better to keep you bg on the high side, then they're idiots and clearly don't understand diabetes. Ask to speak to someone that knows what they are doing. If not, I'd go it alone, bad advice is worse than none at all. You're than one that will have to live with the consquences of high bg's not your nurse, just cos they're scared of hypos?!

I've been in hospital with ketoacidosis(and near death) I wouldn't wish it on my worst enemy. Just keep testing through the night, at least you can treat a hypo, if a hyper gets out of control it's a hospital job

 

[Maxy]

If your nurse is telling you it's better to keep you bg on the high side, then they're idiots and clearly don't understand diabetes. Ask to speak to someone that knows what they are doing. If not, I'd go it alone, bad advice is worse than none at all. You're than one that will have to live with the consquences of high bg's not your nurse just cos they're scared of hypos.

I've been in hospital with ketoacidosis(and near death) I wouldn't wish it on my worst enemy. Just keep testing through the night, at least you can treat a hypo, if a hyper gets out of control it's a hospital job

The nurses are great in general, but there doesn't seem to be any way of helping what's going on with my body with my current treatment.

They say there's no point changing insulin type at this point in time as it'll just complicate things. The pump, to this day I still have not a clue what's going on- I've asked on numerous occasions and I keep being told different things by different doctors/nurses. One says I'd be suitable for it, another says I wouldn't be able to apply "hba1c is too good". It's like I'm just being left here to suffer day to day tiredness, inability to concentrate and horrible effects and moods.

 

[shaggy1974]

tiredness, inability to concentrate and horrible effects and moods.

I had this. I was walking around like a zombie,couldn't read a book for more than a few lines etc. I also had excellent hba1c. I told my gp that I was having problems and that I wanted to switch back to animal insulin(I was on it as a kid and switched to human during a hospital stay)


Now, I don't know if a change will solve your problems, but You need to discuss it with your gp, not your nurse. If your gp won't listen,find one tht will. You shouldn't have to live like this

 

[RuthW]

I want to pick up on something else. Your injection sites, first. Unexplained highs and lows, insulin acting hours after injection, etc, in a Type 1 can indicate poor injection sites. That would explain a lot of the "erratic-ness" of your sugars. Maybe you could rotate them more. You seem to be using only two sites. For how long have you been using only those two sites.

Secondly, as a Type 1, I also do lots of exercise and have high insulin sensitivity. As a (recent) pump user, I find that I have to actually suspend my pump altogether if I want to exercise moderately for an hour (without carb loading), then reduce my basal the next day. It seems to me that you are also very insulin-sensitive but you are not planning your exercise in advance and reducing doses (not blaming here, I didn't either when I was on MDI). I am not agreeing with your nurse about "exercising less" but I would suggest having a few months of logging what each form of exercise does on the day, and on the next two days, so for a while, only exercise one day out of three. Then as you see patterns, start to build back up. Yo-yo-ing is crazy stressful, and those high bloods are not good for you.

So, as a Type 1, I say, a) check your sites; b) examine your exercise program/insulin regime piece by piece.

It is just not as easy for Type 1s as "switch to lo-carb". You've seen already. You'll end up adding yet another unknown factor - your unfamiliarity with bolusing for lo-carb. Plus altering your basal. A lots of type 2s on lo-carb are doing neither of those things.

 

[Maxy]

I want to pick up on something else. Your injection sites, first. Unexplained highs and lows, insulin acting hours after injection, etc, in a Type 1 can indicate poor injection sites. That would explain a lot of the "erratic-ness" of your sugars. Maybe you could rotate them more. You seem to be using only two sites. For how long have you been using only those two sites.

Secondly, as a Type 1, I also do lots of exercise and have high insulin sensitivity. As a (recent) pump user, I find that I have to actually suspend my pump altogether if I want to exercise moderately for an hour (without carb loading), then reduce my basal the next day. It seems to me that you are also very insulin-sensitive but you are not planning your exercise in advance and reducing doses (not blaming here, I didn't either when I was on MDI). I am not agreeing with your nurse about "exercising less" but I would suggest having a few months of logging what each form of exercise does on the day, and on the next two days, so for a while, only exercise one day out of three. Then as you see patterns, start to build back up. Yo-yo-ing is crazy stressful, and those high bloods are not good for you.

So, as a Type 1, I say, a) check your sites; b) examine your exercise program/insulin regime piece by piece.

It is just not as easy for Type 1s as "switch to lo-carb". You've seen already. You'll end up adding yet another unknown factor - your unfamiliarity with bolusing for lo-carb. Plus altering your basal. A lots of type 2s on lo-carb are doing neither of those things.

My injection sites I alternate between my arms, legs (fat on back of hamstrings), bottom and sometimes abdomen. I've got a pretty low bodyfat and find legs difficult as it hits muscle. Abdomen I'm extremely paranoid as I've had lipohypertrophy before.

I reduce my bolus ratio by 20% when I exercise currently. I think I need to increase this reduction as I still go hypo well into the next day (perhaps 12–2pm). The only thing I can say about low-carbohydrate diet is that my insulin requirements were dramatically lower and the highs weren't as sharp- overall I was more even. I realise this is a remedy better suited to type 2's.

 

[Charles Robin]

My injection sites I alternate between my arms, legs (fat on back of hamstrings), bottom and sometimes abdomen. I've got a pretty low bodyfat and find legs difficult as it hits muscle. Abdomen I'm extremely paranoid as I've had lipohypertrophy before.

I reduce my bolus ratio by 20% when I exercise currently. I think I need to increase this reduction as I still go hypo well into the next day (perhaps 12–2pm). The only thing I can say about low-carbohydrate diet is that my insulin requirements were dramatically lower and the highs weren't as sharp- overall I was more even. I realise this is a remedy better suited to type 2's.

You seem like you are able to commit fully to something if you can see the benefit of it. That single minded ness can be an extremely powerful tool. Have you come across Dr Richard Bernstein's complete diabetes solution? In hardback it's quite expensive, but it's practically a steal on kindle. It's very, very in depth, but the guy knows his stuff like no one else. He trained as a doctor in his 40s purely to give credibility to his methods of managing diabetes. Before that he was an engineer who just happened to be dying from type 1 diabetes. Now he's a fit and healthy man in his 80s, still passing on his expertise. It is tough to read but if you can get through it then it could change your life.

 

[himtoo]

Hi @Maxy
just been having a re-read to bring myself up to date.

there are so many things going on that making changes does not appear to be having either the desired effect if any change at all.
the inconsistency is troubling.

the most difficult thing is that life keeps marching on and to me you need to take some time off and almost start over.

my highlights of things to look at

short term ( next few days ) -- shorter needles if possible ( not sure what length you on but 4mm are available ) , change of insulins to animal if possible ( keep pushing on this ) , small bolus doses for protein meals , keep to a real routine for timing ( in the bad old days when i was diagnosed the routine was EVERYTHING )

medium term ( next few weeks )- bo**ocks to the nurse running you higher to avoid hypo's -- your hypo awareness is severely impaired and you qualify on NICE guidelines on that basis for a pump ( she is fobbing you off with a cheaper option and delaying tactics )

get to the Endocrinologist -- camp out at the hospital if you need to ( slight exageration but not much ) - he is the person that can fast track a pump

remember these medical people are people first -- be FIRM and go in prepared ( spreadsheets filled in - the more detailed the better )
in other words don't be fobbed off

finally -- [bro hug] -- you really going through't mill right now

 

[Maxy]

Hi @Maxy
just been having a re-read to bring myself up to date.

there are so many things going on that making changes does not appear to be having either the desired effect if any change at all.
the inconsistency is troubling.

the most difficult thing is that life keeps marching on and to me you need to take some time off and almost start over.

my highlights of things to look at

short term ( next few days ) -- shorter needles if possible ( not sure what length you on but 4mm are available ) , change of insulins to animal if possible ( keep pushing on this ) , small bolus doses for protein meals , keep to a real routine for timing ( in the bad old days when i was diagnosed the routine was EVERYTHING )

medium term ( next few weeks )- bo**ocks to the nurse running you higher to avoid hypo's -- your hypo awareness is severely impaired and you qualify on NICE guidelines on that basis for a pump ( she is fobbing you off with a cheaper option and delaying tactics )

get to the Endocrinologist -- camp out at the hospital if you need to ( slight exageration but not much ) - he is the person that can fast track a pump

remember these medical people are people first -- be FIRM and go in prepared ( spreadsheets filled in - the more detailed the better )
in other words don't be fobbed off

finally -- [bro hug] -- you really going through't mill right now

Thanks Himtoo, I really appreciate it.

I woke up 16.8 today, at 10:58 I did a correction bolus for a 0 carb meal of 9 units novorapid. I jumped up to blood sugars of 20 at 12:03, had all symptoms of DKA including vomiting but still only ketones of 0.2. I was going to go to A and E but I decided there was no point as they are basically not interested unless you have ketones.
Going there would just mean I'd be held in there for ages after a long wait, by which time the insulin i did ages ago would begin working and I'd be back down.

There just seems a real injustice in all of this and I'm beginning to get really angry about it. Why should I have to live like this? It's like I'm telling them what's going on repeatedly but no serious action is being taken. Just little changes.

 

[Maxy]

I'm also being told to do fewer tests- on average I've been doing 8-12 tests a day- mainly due to paranoia of spontaneous hypos and general unpredictable control. I'm told that doing more tests is pointless because it'll just make me more paranoid and worry about it more. I'm just being given so much conflicting information which is hard when I'm meant to be co operating with them fully to show my commitment.

 

[himtoo]

I'm also being told to do fewer tests- on average I've been doing 8-12 tests a day- mainly due to paranoia of spontaneous hypos and general unpredictable control. I'm told that doing more tests is pointless because it'll just make me more paranoid and worry about it more. I'm just being given so much conflicting information which is hard when I'm meant to be co operating with them fully to show my commitment.

that is utter rubbish @Maxy -- you test as much as you need for you to feel you know what is happening to YOUR body -- not their body -- YOURS.

next medical person to say that to you -- ask them how often they drive their car without a speedometer.
in fact you sound a perfect candidate for a funded CGM to try and make some sense of what is going on,

 

[Spiker]

Are you measuring blood ketones or urine ketones? If you have DKA symptoms it may be that the urine ketone reading has not caught up with the blood ketone reading, which does take a few hours.

 

[keeer]

Do things in moderation - this is what most doctors would advise. You need a perfect basal rate. With levamir it's meant to be a 24hour insulin (most health professionals will tell you it's not.. this is important for what comes next).

So first thing, take your usual levamir, test your blood sugar throughout the day and avoid exercise, food and stress (we're looking for stable results). - if it goes out of range at any point (3.5 - 7) write down the time. If you find it going high around 12 hours after your first levamir dose for example, then the "24 hour basal" isn't working and is only helping for half the time it should, in which case you need to split the dose and take half every 12 hours (I'd strong recommend speaking to a doctor about this). If you find your blood sugars continually going low, you're taking too much levamir and need to reduce the amount. All of this basal stuff takes some time and trial and error, try not to go too long without food.

The next step is bolus, test your blood sugar before you eat something. Choose something containing carb that you know the carb for (i.e not take away food, and nothing like pizza etc), also avoid food with lots of carb (errors are harder to detect in extremes). Take your usual insulin and test 5 hours later (supposedly quick acting insulin lasts for 5 hours although I'm sceptical fo this). After those 5 hours, your blood sugar should be the same as it was before your meal. If it's too high, the ratio of insulin to car bis wrong and needs increasing, if your blood sugars low, the opposite is the case.

Now my personal thoughts; I've had "yoyo" blood sugars in the past and discussed with people low carb diets, the NHS are very anti the idea - there's a philosophy that diabetics can live a normal life; but there's numerous other factors to consider which prevent this (such as it may take 5 hours to get your blood sugar back down to a normal level after food, or the glycemic index of food, or miscalculating the carb in a meal).

Insulin is the only thing which can ruin your blood sugar levels (too much or too little), so my philosophy is avoid carbs and avoid all the bolus issues (only do this if your basal rate is perfect). High blood sugars will occur gradually (providing you don't eat carb) and low blood sugars will also be more gradual (meaning their severity will be less). I changed to no carb about 9 months ago, my blood sugars never been more stable. Google Dr Bernstein, he wrote a book about this whole thing (NHS hate it). The irony is, every time I go for a checkup they always congratulate me "your conrol is perfect, must be the pump", I've never told them I'm doing no carb. It's worth noting no carb is a lifestyle change and it's not for everyone, some people simply miss carb too much - but I just wonna live a little longer at the end of the day, I'll never eat pizza again which is awful; but I'll never be in hospital with hypos so severe I've bitten off bits of my tongue because they're so extreme. At least try the first bit and think long and hard about whether you can do low carb, have a read of that guys book.

 

[Maxy]

that is utter rubbish @Maxy -- you test as much as you need for you to feel you know what is happening to YOUR body -- not their body -- YOURS.

next medical person to say that to you -- ask them how often they drive their car without a speedometer.
in fact you sound a perfect candidate for a funded CGM to try and make some sense of what is going on,

I really like the speedometer analogy, that's the way I feel- like it's trying to negotiate an already difficult/fragile situation walking through the dark. They've said I'll be able to test the CGM but they're saying I'm a while away from being ready to do that and currently there's no point until I've established suitable basal/bolus.

Are you measuring blood ketones or urine ketones? If you have DKA symptoms it may be that the urine ketone reading has not caught up with the blood ketone reading, which does take a few hours.

I was testing blood ketone readings, I didn't test again at the time but I've been relatively better after I posted a few days ago... it was after I did exercise I seemed to rebalance.

What I'm finding really frustrating is hearing so many differing opinions and interpretations of how things should be done, it's such a complicated disorder. From a scientific/pharmacological perspective I would have assumed the answers would have been very black and white, right or wrong answers. Instead, everyone seems to have a different opinion and knowing who to trust and follow is really difficult. I guess this could be due to it being a metabolic disorder, many different factors we encounter in our lives as humans influence our metabolism so it's a complex picture.

I'd just like to feel like I'm not being left in limbo and see some actual action to give me some relief of the uncomfortable experience I've had over the past few years.

 

[Maxy]

Also today I was told the reason my Novorapid is taking 3–5 hours to do anything is because of problems with my injection sites and/or basal issues (which you have rightly noted Keeer).

I was told that due to the amount of exercise I'm doing that I should avoid doing injections into my arms or legs and inject the abdomen. I told them this area is problematic and made them change their mind showing them my previous permanent lipohypertrophy. They then felt other injection sites and said that there was a sign of lumps at the top of my right bum cheek.

With the arms one of the nurses pointed at my tricep, the muscle sticks out a bit- she insisted "100% that is lipohypertrophy". I argued that it was muscle tissue, showing it was the same on the other arm- I relaxed and tensed the muscle to prove it, felt like a strange frustrating biology lesson.

So now I'm left being told I can't inject my abdomen, can't inject my arms, can't inject my right bum cheek. That leaves me with my left bum cheek and the sides of my thighs which barely have enough fat on them to safely not hit the muscle. I've been advised to just put the needle in 1mm or so just under the skin- to me this feels like it's defeating the point of changing to 4mm needles, as i'm now just controlling the depth of the injection manually which is so unreliable.

Why do they not do 1mm/2mm/3mm needles? Makes it feel like the illness only caters for patients over a certain body-fat.

So now to add to this complicated mess, I have FEWER injection sites to choose from. Is this not right or am I just going mad?

 

[Maxy]

Do things in moderation - this is what most doctors would advise. You need a perfect basal rate. With levamir it's meant to be a 24hour insulin (most health professionals will tell you it's not.. this is important for what comes next).

So first thing, take your usual levamir, test your blood sugar throughout the day and avoid exercise, food and stress (we're looking for stable results). - if it goes out of range at any point (3.5 - 7) write down the time. If you find it going high around 12 hours after your first levamir dose for example, then the "24 hour basal" isn't working and is only helping for half the time it should, in which case you need to split the dose and take half every 12 hours (I'd strong recommend speaking to a doctor about this). If you find your blood sugars continually going low, you're taking too much levamir and need to reduce the amount. All of this basal stuff takes some time and trial and error, try not to go too long without food.

The next step is bolus, test your blood sugar before you eat something. Choose something containing carb that you know the carb for (i.e not take away food, and nothing like pizza etc), also avoid food with lots of carb (errors are harder to detect in extremes). Take your usual insulin and test 5 hours later (supposedly quick acting insulin lasts for 5 hours although I'm sceptical fo this). After those 5 hours, your blood sugar should be the same as it was before your meal. If it's too high, the ratio of insulin to car bis wrong and needs increasing, if your blood sugars low, the opposite is the case.

Now my personal thoughts; I've had "yoyo" blood sugars in the past and discussed with people low carb diets, the NHS are very anti the idea - there's a philosophy that diabetics can live a normal life; but there's numerous other factors to consider which prevent this (such as it may take 5 hours to get your blood sugar back down to a normal level after food, or the glycemic index of food, or miscalculating the carb in a meal).

Insulin is the only thing which can ruin your blood sugar levels (too much or too little), so my philosophy is avoid carbs and avoid all the bolus issues (only do this if your basal rate is perfect). High blood sugars will occur gradually (providing you don't eat carb) and low blood sugars will also be more gradual (meaning their severity will be less). I changed to no carb about 9 months ago, my blood sugars never been more stable. Google Dr Bernstein, he wrote a book about this whole thing (NHS hate it). The irony is, every time I go for a checkup they always congratulate me "your conrol is perfect, must be the pump", I've never told them I'm doing no carb. It's worth noting no carb is a lifestyle change and it's not for everyone, some people simply miss carb too much - but I just wonna live a little longer at the end of the day, I'll never eat pizza again which is awful; but I'll never be in hospital with hypos so severe I've bitten off bits of my tongue because they're so extreme. At least try the first bit and think long and hard about whether you can do low carb, have a read of that guys book.

I honestly am a believer in a low carb diet being very beneficial to BG stability. I did this for a few months, zero carbs and I stayed absolutely perfect just as you described, stayed at a static 5-8. This was while exercising at high intensity and eating a healthy varied diet, so I feel physically it's very much possible. I'd happily live without carbs but it is my understanding that this is dangerous for a Type 1 Diabetic as the liver is unable to replenish glycogen stores- meaning that at some point if you're having a serious hypo that emergency reserve won't be there to save you and you might not wake up.

 

[donnellysdogs]

@Maxy
I've been type 1 for over 30 years and lower carbed pretty much all of 50+ years.

I have a max of 50-60g carb a day. I have not got any complications at all.

No medic has even asked what I eat.... They just assume that because I'm Lean and fit and hba1c is 44-49 pretty much consistently that I eat ok..

I've never had DKA. Yes in 30 years I have had a few times of assistance for a hypo. I'm still here. I have hypo awareness. The last time I had assistance in the last 4 years was because I was vomiting after a takeaway and I had a huge bolus and knew I wasn't going to be able to keep my levels up....Intook everything I possibly could.. But told hubby to phone paramedics because everything I was taking was being puked back up!

If you eat proper food... Not junk... Not ready meals... This will naturally be lower in carbs...i actually have ate proper food and didn't even realuse I was a low carber until I read posts on this forum....
Bread though I do not count as proper food as humans are the only animals clever enough to grow grains and harvest them.. But we're the only animals stupid enough to eat them. Bread comes from grain and is to me not proper food.

 

[Maxy]

@Maxy
I've been type 1 for over 30 years and lower carbed pretty much all of 50+ years.

I have a max of 50-60g carb a day. I have not got any complications at all.

No medic has even asked what I eat.... They just assume that because I'm Lean and fit and hba1c if 44-49 pretty much consistently that I eat ok..

I've never had DKA. Yes in 30 years I have had a few times of assistance for a hypo. I'm still here. I have hypo awareness. The last time I had assistance in the last 4 years was because I was vomiting after a takeaway and I had a huge bolus and knew I wasn't going to be able to keep my levels up....Intook everything I possibly could.. But told hubby to phone paramedics because everything I was taking was being puked back up!

If you eat proper food... Not junk... Not ready meals... This will naturally be lower in carbs...i actually have ate proper food and didn't even realuse I was a low carber until I read posts on this forum....
Bread though I do not count as proper food as humans are the only animals clever enough to grow geains and harvest them.. But we're the only animals stupid enough to eat them. Bread comes from grain and is to me not proper food.

Exactly, I second the low carb diet being appropriate and a carb intensive diet not being a natural thing. This is going off topic but I reckon the modern obesity epidemic and some instances of type 2 are caused by a society whose diet is carbohydrate focused. Capitalism is causing our food sources to become more refined, this has happened on a wide scale, the cheapest food available is the food that is the most unhealthy for us- sugar.
Everything in moderation and balance, there's something about bread that doesn't sit right with me, I have always felt really tired after eating it and it just doesn't feel natural or healthy to me- I feel as though I would after eating chocolate/biscuits after eating bread.