No idea what I'm doing - advice needed!

yes i do sometimes
carb counting is good and i find it effective to a point but i get it wrong too
i split mine i was advised by my clinic to do so

i get how you feel i do its exhausting doing this in fact its a full time job ! you don't have bad control. i think all of us are affected by doing everything right and then you get this spike and its so frustrating.
its never gonna be perfect!!
have you spoken to your diabetes team about how you are feeling?
and carb counting may be different for you you may need a different ratio of insulin for what your eating again talk to your team.
and when you say its seems good on paper well that's because it is.it doesn't really lie if your doing badly it will show up.!!!
all of us can do better that's just the nature of diabetes but please understand your doing so well. and so many different foods affect people in different ways.
no two diabetics are alike whether that's insulin given background or fast acting
i was like this a few weeks ago myself totally fed up sick of the whole thing.
my advice would be to talk to your team because what works for me may not work for you.
and just accept this is a bad diabetes day let me tell you i can get myself in a right mess when my bloods spike and will not go down or I've over estimated my insulin I've been a diabetic for 16 years and I absolutely have days where it goes horribly wrong hormones can affect you, or stress and i feel i should know what's going on here but sometimes i don't !
so please GIVE YOURSELF A BREAK
you are doing excellent and some days i feel exactly the same as you .

please take care
tracey xx

Katie Kerr said:

Carb-counting is just not working for me, and that saying of "You should be able to eat 15g of carbohydrate without needing insulin", doesn't seem to be true (is this just a myth that dieticians say??). For example, I could eat a protein bar with 10g carbs and my blood sugars would spike up to 13mmol.

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I'm sure some can have 15 carbs without needing any insulin however some of us just cannot, if I do my blood sugar really does start heading towards the stratosphere!

Katie Kerr said:

I am on 25 units of Tresiba (once a day at night), which generally causes me to wake around 3.7mmol, sometimes lower! But if I reduce the tresiba to avoid these waking lows, I seem to have worse control of my blood sugars throughout the day (sometimes having spikes after having not eaten anything for 3+ hours?!)

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Something like Levemir may suit you better if you need much less basal overnight as its taken twice a day so you can have different amounts overnight as to during the day - you probably need to do some basal tests to actually determine whether it is this though - I'm sure someone else can link the details, because it may just be your not taking enough for your previous meal and its taking a good while to kick in

Katie Kerr said:

1 - Do people experience daily highs (10+) or is this just my bad control?

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Whilst the target is 4-10, only a small amount will ever manage to get close to 100% most of the time, the body is chaotic, and trying to guess what its supposed to be doing all the time just isn't going to happen Most days I'll be over 10 at some point, some days it just refuses to drop down from just above ten for no apparent reason

Katie Kerr said:

2 - Does carb counting really work for people who have somehow nailed their ratios, or am I better to just avoid carbs?

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It does work for many, at least mostly, but as I said we cannot replicate the exact behaviour of the pancreas, and yes it can be hard work

Oh and welcome to the forums

So let's deal with your bullet points first.

1) Yeah, the HBA1C is an average so it is hypothetically possible to get a "good" HBA1C from bad results. That said, the 70% in target suggests you're doing pretty well. Of course, 70% in target doesn't preclude you from being out of target from time to time.
2) Hypothetically 15g shouldn't be a problem if your Basal is set at a certain level. However, I find if my Basal is set to that level, more often than not I NEED that snack to prevent my blood sugar from dropping low. This isn't actually entirely dissimilar to what I had to do using mixed insulin. There's also the issue not all carbs are created equal and will affect your Blood Sugar at completely different speeds. It might be worth trying different 15g snacks to see if the same thing happens.
3) It's possible on a low-carb meal your body's reacting to the protein content in the meal.
4) Experience Tresiba user here, Tresiba be like that. Though, I've had worse experiences with other Basals. Generally, what I've resigned myself to doing is setting the dose to where I'm most able to deal with the issues that dosage creates. I've yet to find the perfect dose of Tresiba. Long story short, Tresiba has extremely flat action (where most Basals have peaks and troughs). However, the body's insulin requirements are not generally speaking flat, and very hour to hour. They also vary massively from person to person. One of the keys to getting your basal correct is learning what your peaks and troughs are (Libre trends help a lot with this). For instance, I've found that I need more insulin between 7am-9am and less between 12:30 and 2:30 pm. So, I kinda have to work round this whatever I'm doing with my Basal. So my imperfect choice is to set my Tresiba high to help deal with the morning needs, and just be ready to take extra carbs when my Insulin needs drop in the middle of the day.

Your questions

1) I do my best to avoid them, but I feel it must be stressed I could do everything that worked today and it just doesn't work tomorrow. Diabetes be like that.
2) Basically, yes. However, the thing that has to be taken into account is your Bolus requirements will change due to any number of factors, so errors are almost unavoidable cause I doubt it's possible for anyone to consider all the variables all the time. I just try to catch mistakes fast, and correct them equally fast. I've found generally the earlier you catch a high or a low the easier it is to resolve. Libres help a lot with this.
3) People do. But generally splitting Insulin works best on non-Tresiba Insulins. Tresiba has such a long action time there shouldn't be any need to split. Splitting is usually done for Basal with shorter actions times which are unlikely to last the full 24 hours. Tresiba tends to more than 24 hours, so in a weird sort of way it is already split by having it once a day, if you see what I mean.

The examples you give suggest you are following a low carb diet.
Those with type 2, who get great results, from low carb diets do not realise that those of us with Type 1 need to dose insulin for protein when we have little or no carbs. This is because, our bodies need glucose. If it cannot get it from carbs, it will break down the protein instead.
And more confusingly, the insulin to protein ratio varies depending upon the type of protein you are eating.
For example, I need to dose an equivalent of 15g carbs when I eat a 3 egg cheese omelette but a high dose for nuts and a lower dose for salmon.
And, if that isn't enough to deal with, protein spikes later than carbs ... and, of course, a different time for different types of protein.

This became too complex for me to manage so I quickly gave up low carb diet and reverted to an "on the lower side of normal" carb diet and found my blood sugars much easier to control.

So, in your situations I would
- do a basal test to check my basal dose is correct
- trial a insulin to protein ratio of half my insulin to carb ratio (this works for some people)
- trial dosing for protein just after I finish eating (this works for some people)
- give myself a break
- try not to stress

If all that fails I would try eating more carbs and go for the easier option..

(Mod edit re forum ethos)

Katie Kerr said:

Hi everyone,

I'm posting because I'm in one those phases where you just get so sick of being T1 and I feel like 7 years into it I still have absolutely NO idea what I'm doing. I appreciate I do need to speak to my healthcare team, but that is easier said than done with NHS waiting lists, so any advice at all would be much appreciated while I wait. Thank you

My current situation:

• On paper my control looks 'good', (HbA1c 6.5%, ~70% in range (4-10mmol) on freestyle libre), but day to day I do not feel in control
• Carb-counting is just not working for me, and that saying of "You should be able to eat 15g of carbohydrate without needing insulin", doesn't seem to be true (is this just a myth that dieticians say??). For example, I could eat a protein bar with 10g carbs and my blood sugars would spike up to 13mmol. I don't know if the issue is with my carb-counting, or my background insulin. And I don't know how to work it out, nevermind how to fix it.
• Midday is when I have my worst spikes. Everyday I eat a salad (chicken+lettuce+mayo+tomatoes) and a natural yoghurt (<5g carbs) with a decaf coffee, and I still normally spike up to about 12mmol. Surely there is no carbs in this???
• I am on 25 units of Tresiba (once a day at night), which generally causes me to wake around 3.7mmol, sometimes lower! But if I reduce the tresiba to avoid these waking lows, I seem to have worse control of my blood sugars throughout the day (sometimes having spikes after having not eaten anything for 3+ hours?!)

I have a few questions too, sorry if these are obvious, but I know literally zero other diabetics and it would just be helpful to chat.

1 - Do people experience daily highs (10+) or is this just my bad control?
2 - Does carb counting really work for people who have somehow nailed their ratios, or am I better to just avoid carbs?
3 - Does anyone split their background insulin? If so, why? Wondering if this could help with midday spikes if I take in the morning and evening.

Feeling a bit exhausted and fed up with it all, any help is much appreciated.

Thanks,
Katie

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I heard the same comments about eating 15g of carbs when I attended something called IMaGE (Insulin Management and General Education) at my local hospital. But what 'I' can get a way with without bolusing depends hugely on activity levels. Sitting on the sofa and eating 15g would see my glucose rise without a bolus, but if I was heading out for a walk I'd probably chance it.

I used to use glargine based insulin and when I started using the Libre it became abundantly clear that the insulin was only lasting around 18hrs in the body despite Lilly's claim of it being a 24hr insulin. So I split the dose to get 24hr cover. Now I use Levemir which works better as a split dose anyway.

I too am on a greatly reduced carb intake which is sometimes less than 50g per day but mostly around 100g. I tried to eat a 'normal' diet and bolus accordingly but if I bolus for a high carb meal then I hypo later. So I eat less carbs and inject less and it seems to work (better) for me.

As for your salad, if you spike up to 12mmol, what level were you before the meal?

Welcome to the forums by the way!

Hi. Because Tresiba lasts more than 24 hours it isn't normally split. You may be better on Levemir which usually does need splitting but with your profile it may give you more flexibility to get the balance right.

Daibell said:

Hi. Because Tresiba lasts more than 24 hours it isn't normally split. You may be better on Levemir which usually does need splitting but with your profile it may give you more flexibility to get the balance right.

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This could be true, but it isn’t necessarily true. Matching the Levimir to your body’s own quirks is a whole endeavour in itself. It’s one I tried fruitlessly to perfect for years and eventually had to settle for Tresiba’s flatness as a few hours of suboptimal performance a day was nothing compared to what happened when my Levimir wasn’t lined up where it should be.

Katie Kerr said:

Also - I think I may have massively underestimated the impact of protein from my low-carb lunches (normally about 70g of chicken slices)! I normally sit at about 6-8mmol before lunch urbanracer. Thank you InResponse for explaining that, I knew protein could have an effect but I assumed it was minimal. I never intentionally set up to be low-carb/keto either, it was more of a case of trying and failing with carb counting, so I thought I could avoid needing fast-acting insulin altogether if I just didn't have any carbs with lunch, (skipping breakfast altogether because I'm so sensitive to carbs in the morning) and then only having to carb count for meals in the evening. I will try a dose of 3 units (about half my current carb ratio) and see how I get on.

Lots to work on! Thank you all so much for sharing your expertise Regretting not joining the forum a long time ago.

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It’s actually crazy how much protein can affect your BG. I decided to give low carb a go starting last Monday & my bloods where literally all over the place. I went from eating 200g of carbs a day to around 35G, my time in target while eating carbs was between 95-100% with an average BG of 6.5mmol. I’m into my second week of low carbs & my struggling to get 75-80% time in target and sitting between 9-12mmol for long periods.

I’m going to revert back to eating carbs as I honestly feel I have no control at all with trying to bolus for protein. I was having a 4 egg omelette for breakfast with 7g of carbs & needing to bolus for atleast 25-30g of carbs to cover protein. My protein shakes where carb free but I’d need to bolus for 20g of carbs. I went low carb thinking I could massively reduce my insulin intake but it’s been the complete opposite, I’m taking nearly the same amount of insulin but with massive stresses of trying to guess how much insulin to take for protein. I had far more stable control that was easy to bolus for when eating carbs.

As for your question on carb counting, I have mine nailed down to a T! When I’m eating carbs I can usually go all day and never see a rise about 8mmol. In fact before I changed to low carb I managed to be 97% in target range for 21 days. The problem is you can have maybe 3/4 different carb ratios throughout the day. I’m 1:8.5 on a morning, 1:9 on an afternoon and then 1:10 for an evening. That slight difference in ratios had a massive affect on my control.

I definitely can’t eat 15g of carbs without a bolus either, I love Grenade protein bars and of them will easily put me into the 13/14mmol range if I didn’t bolus!

I have never ever been able to eat an extra 15g of carbs without either a massive spike or taking extra insulin to cover it, unless I've been next door to hypo to start with. I think it's a myth, like the one that says baked potato with baked beans is a healthy meal for a type 2. The myths just assune that we are all the same and that carbs are much less potent in their effects than they are in reality.

Katie Kerr said:

• Carb-counting is just not working for me, and that saying of "You should be able to eat 15g of carbohydrate without needing insulin", doesn't seem to be true (is this just a myth that dieticians say??). For example, I could eat a protein bar with 10g carbs and my blood sugars would spike up to 13mmol. I don't know if the issue is with my carb-counting, or my background insulin. And I don't know how to work it out, nevermind how to fix it.

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Hi Katie,

Welcome to the forum...

Wherever you heard this one defies logic, i'm afraid.
I know on average how much 15gs would raise my BGs. It needs specific personal dose of insulin. Unless I'm low of course...

Katie Kerr said:

Wow!! I am very jealous, I don't think I've ever been above 95% for more than 2 days! I have so many questions haha. Do you always take your insulin 15 minutes before food? I have found mixed results with this. Also - do you find that there is a spike (even a small one) immediately after eating food which comes back down to a normal range, or have you managed to keep it flat throughout? Finally, do you pretty much eat the same foods / have a strict routine, or are you able to be flexible?

Congrats on having such good control!! I actually didn't even think this was possible. My slightly terrible GP (who I speak to when I can't get through to the diabetes care team) had called me a 'perfectionist' for wanting to improve on my 70% in target, so it's great to know it's doable.

It sounds like from everyone's feedback that the 15g of carbs without insulin is definitely a myth, I am so pleased I know that now! I kept thinking I needed to increase my background but that was causing hypos.

Thanks again everyone!

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Hi Katie, ask as many questions as you want.
For me I need to bolus atleast 20 minutes before breakfast, lunch & dinner 10/15 minutes is normally enough. On spikes, it can vary between what foods im eating. If for instances I’m having 200g of chicken with 200g of white rice I’ll stay pretty much perfectly straight. Porridge/oats can sometimes see a small spike but nothing major.

I’m massively strict with my diet & I eat the same meals for 7 days, then on a Sunday I plan for the next week. So basically I’ll know exactly how many carbs I need to bolus for with each meal without needing to work it out. All my foods are weighed out to the exact gram as well that way I can be perfect with carb counting. This isn’t particularly anything to do with my diabetes it’s because I go to the gym 6 days a week following a bodybuilders lifestyle. A typical day for me would be something like

50g of oats with 25g peanut butter + 1 scoop of protein or 3 eggs scrambled with 2 crumpets.

200g of chicken with 200g of rice & 50g stir fry mix

200g mince/salmon with 200g white potato & 50g green beans.

Pre workout snack would be a blueberry muffin or a Rice Krispies squares bar.

post workout something like a grenade carb killa protein bar, 50g of Rice Krispies or if I’m trying to cut down on the calories that week then just a tin of flavoured tuna.

I’ll also have 3 protein shakes throughout the day, one mid morning the second after the gym & the 3rd before bed.

Usually I’ll just mix up the protein sources week to week, could swap a few carb sources sweet potatoes instead of white potato etc.

It’s plain & boring but it’s what works for me, keeps me pretty full and I can keep good control.

You have to be careful with DAFNE however. The DAFNE literature clearly makes assumptions about what type of Insulin you're on and where your Basal dose will be set. For instance, the DAFNE course I was on last year didn't even acknowledge the existence of Tresiba or Libres. The 15g snack without Bolus comes from DAFNE, and as we've discussed above it's not nearly that simple.

Hi, lots of good ideas already. Just thought I'd add that you don't have to wait until a physical appointment to ask your diabetes team for some advice. Mine have email addresses for non-urgent queries or they can arrange a quick call back if you want to discuss something. It might make your face to face appointment more useful if eg you're wondering about whether your basal is correct and they know that in advance and ask you to do some finger prick tests at specific times to give better insight into what's happening.

I was put on levemir once a day when diagnosed and it worked fine. After about 10 years my HbA1c started creeping up for no apparent reason and some targeted testing highlighted it was only lasting me 18hrs no longer 24hrs. I now inject a low dose before bed and a higher dose when I wake and this works well at the moment.

I find carb counting works really well for me, I usually eat under 100g carbs a day, often under 50g as that has always been my preferred diet (even pre diagnosis). I do get caught out and every now and then go back to strictly weighing foods if I feel my ability to do it by eye has slipped. Eating out is always a guess but I haven't eaten out through the pandemic so not had that problem for a while! Although usually negligible, I do find a huge salad can have carbs which add up, so might only need 0.5 or 1u novorapid for it, but would start rising without. I hate eating the same things too often and so do vary meals daily and as I fancy. If you're returning to your pre meal glucose level then your carb counting is probably OK, I'd suggest playing with dose timing instead. Novorapid can have an effect up to 5hrs after (usually less if I have been vaguely active I find though).

My basal requirements change depending on the base level of exercise I have been doing over the past few days/week. By tweaking my basal (I appreciate this is easier with a twice a day basal with shorter action profile) I can keep my bolus ratios between 1:10, or 1:15 if I'm more active. Many others need different ratios for different times of the day.

Remember non-diabetics get spikes, but the key thing is to not stay high for long and try to avoid yo-yoing. I struggled when lockdown first started as my job suddenly became desk based and I was therefore less active. I sometimes needed to prebolus up to 45mins before lunch on those days! If I've been exercising I sometimes don't need to prebolus at all. I don't always get it right but using the libre has given me confidence to inject, then wait to start eating until it shows my bloods are starting to drop. This has helped me avoid spikes too high. If I am staying higher longer than I'd like I try and do some exercise rather than a correction dose as I find this quite effective and faster. Once I'm not working from home I won't be able to do that though!
Hope this helps a bit. You're doing well by all measures, but never a bad thing to want to improve!

StewM said:

This could be true, but it isn’t necessarily true. Matching the Levemir to your body’s own quirks is a whole endeavour in itself. It’s one I tried fruitlessly to perfect for years and eventually had to settle for Tresiba’s flatness as a few hours of suboptimal performance a day was nothing compared to what happened when my Levemir wasn’t lined up where it should be.

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Hi. I agree that we are suited to different insulins, sometimes, so making a change may be worth it if the current one can't get balanced.

@Katie Kerr I know others may disagree as some don't get on with it but I find Lantus works fine for me, and after trial and error I split it 50/50 morning and evening. I've had T1 for 35 years so my Dafne course was a long time ago, and in those days we were told 10g was a snack you didn't need insulin to cover. It's never been true for me. Good luck in getting sorted.