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Ivytype1

New Member
Relationship to Diabetes
Type 1
Hi Everyone, I'm new here but not new to diabetes!

I'm Ivy, 29 years old and type 1 diabetic for 22 years. I have always had relatively well managed diabetes and not had any issues, however, over the last few years this has all seemed to go downhill and to be honest I am really struggling with so many aspects of control and my health.

I do not have a good stable healthcare team looking after me and it has taken over 2 years of complaining to my GP to even get referred to my local hospital to see the diabetic team there (although they have told me they can only see me every 8 months). I am at a loss of where to turn to for advice and support.

One of my main issues at the moment is night-time hypos. It is at the point now where I will have 1-5 hypos every night. I wake up and treat the hypo as normal and then my blood level never seems to maintain and will drop again in the night. Obviously as you can imagine this has had an adverse effect on my sleep quality and is causing me other issues in my life.

Another issue is that no matter what glucose reading I go to bed on, I will wake up hypo. It doesn't matter if I went to sleep in a good range or even if my blood was high before bed, it will steadily drop in the night until the point I have a hypo and wake up. I have thought about lowering my long-acting insulin to negate this drop but I do not see this issue in my daytime readings. I am on Tresiba and my levels seem to stay pretty stable in the day when I'm not eating etc.

There are many other patterns I don't really understand and don't know how to fix but these are the biggest two issues for me right now. I am very lost and this is having such a negative impact on my work and personal life as well as my health. I feel like I should have a much better handle on this being diabetic for so long.

Some other relevant info:
-I'm on Novorapid (10:1 ratio) and Tresiba (13 units before bed)
-I used to be on Levemir for over 10 years before the Tresiba but I was switched semi-recently due to the issue I mentioned above with the dropping blood levels in the night
-I have a libre 2 sensor
 
Hi Everyone, I'm new here - I'm Ivy, 29 years old and type 1 diabetic for 22 years. I have always had relatively well managed diabetes and not had any issues, however, over the last few years this has all seemed to go downhill and to be honest I am really struggling with so many aspects of control and my health.

I do not have a good stable healthcare team looking after me and it has taken over 2 years of complaining to my GP to even get referred to my local hospital to see the diabetic team there (although they have told me they can only see me every 8 months). I am at a loss of where to turn to for advice and support.

One of my main issues at the moment is night-time hypos. It is at the point now where I will have 1-5 hypos every night. I wake up and treat the hypo as normal and then my blood level never seems to maintain and will drop again in the night. Obviously as you can imagine this has had an adverse effect on my sleep quality and is causing me other issues in my life.

Another issue is that no matter what glucose reading I go to bed on, I will wake up hypo. It doesn't matter if I went to sleep in a good range or even if my blood was high before bed, it will steadily drop in the night until the point I have a hypo and wake up. I have thought about lowering my long-acting insulin to negate this drop but I do not see this issue in my daytime readings. I am on Tresiba and my levels seem to stay pretty stable in the day when I'm not eating etc.

There are many other patterns I don't really understand and don't know how to fix but these are the biggest two issues for me right now. I am very lost and this is having such a negative impact on my work and personal life as well as my health. I feel like I should have a much better handle on this being diabetic for so long.

Some other relevant info:
-I'm on Novorapid (10:1 ratio) and Tresiba (13 units before bed)
-I used to be on Levemir for over 10 years before the Tresiba but I was switched semi-recently due to the issue I mentioned above with the dropping blood levels in the night
-I have a libre 2 sensor
 
If you are low before bed do you eat something that will last long term like, say Digestive Biscuits or do you just eat something to get your blood sugar up quickly?
 
If you are low before bed do you eat something that will last long term like, say Digestive Biscuits or do you just eat something to get your blood sugar up quickly?
Seems like you may need different basal at night and during day...or a pump
 
-I used to be on Levemir for over 10 years before the Tresiba but I was switched semi-recently due to the issue I mentioned above with the dropping blood levels in the night
As @Tdm suggests, something like Levemir would be my first suggestion since it allows different basal doses for day and night. I take more in the morning than in the evening for that reason. It's also possible to play around with timings (so you can have, say, 14 hours from the evening dose to the morning one (and 10 hours from morning to evening)). But if Levemir didn't work for you, I think that may point to you needing a pump.

Having several hypos overnight which you can't resolve sensibly all suggests you ought to be seen more frequently by a DSN (or at least have phone or email support from them). I wonder why that's not possible where you are? I also wonder why your GP's reluctant (I know mine would be fine referring me in such circumstances).
 
Levemir is not intended to be used once daily and does not even have to be split with the 2 doses 12 hours apart. The body's own natural pattern of blood glucose level for all of us - without diabetes - is naturally at its very lowest between approx 2am to 3 or 3.30am, 'ish'. So, when I used Levemir i started off split 50/50 - 9u at c. 7am, 9u at bedtime c. 11pm and fiddled with it because of hypos overnight - till eventually I took 14u at 7am and another 4u in the evening BUT, that was far improved when I was able to move it forward to approx 9.30-ish pm.

I only discovered all of this by the diabetes internet forum to which I belonged back then explaining it all to me properly - and this forum also has this info for everyone to use - hence I'm bound to say to you - commit yourself to discovering from 'Basal Testing' what her own body needs and when it needs it and then speaking to her own medical team in order to try and match those needs because it absolutely CAN be done and frankly - it just ain't all that difficult but just takes time and a bit of dedication is all. In truth Yes, it is a bit tedious while we need to do it - but in comparison to our own health and wellbeing going forward, it's nowt.

I dunno where the instructions are on here so could someone else help me out, here please? @SB2015, @Inka, @everydayupsanddowns, or indeed anyone else
 
It is not uncommon to have different basal requirements at different times of the day - this is the major purpose for a pump which can give you different basals ever 30 minutes.
Tresiba is great for some people because it is so long lasting and stable. But it is not great if your basal needs vary (either at different times of the day or at different times of the month).
If a pump is not possible (or difficult to justify), a shorter acting long acting insulin such as Levemir would be beneficial as it allows you to have a different dose during the day and night.

In the meantime, in your position, I would reduce my basal (expect it to take 4 days for the change to take affect) and "top up" with NovoRapid corrections during the day. For me, these top ups would be better than loss of sleep during the night.
 
Might be worth trying switching the Tresiba to when you wake. It's profile seems to be most active around eight hours after injecting & then tails off. So if you injected when you wake, it would be least active overnight. So theoretically should help keep your levels up.
 
So sorry to hear you are going through difficult times with your diabetes and can understand how that affects all aspects of your life, particularly with such a routine of disturbed sleep. Hopefully we can help you figure it out.

As others have said, Levemir would be my suggestion to solve your problem but you need to understand how it works and how to adjust it and unfortunately some DSNs are not entirely familiar with it.
Can you talk us through the routine and doses you were using with Levemir. Ie. Did you just take it once a day or twice and if split into 2 doses, were they even doses or adjusted for your body's needs. For me, like @trophywench, I need much less basal insulin at night than during the day and if I have been really active for a few days I need none at night and sometimes also need to top up on slow release carbs at bedtime even with a zero dose. Currently I need 24 units in the morning, the minute I wake up and certainly before I get out of bed and anywhere from 0-4 at night. Most HCPs start you off on an even split, but then don't tell you that you may need to adjust it.... particularly if you don't have regular appointments with a regular nurse. You can then fine tune it further by adjusting the times that you take it as @trophywench has mentioned..... so for me injecting my large morning dose before I set foot out of bed is important and then if I need an evening dose, it is usually at bedtime but sometimes I need to bring it forward for a few weeks if my levels start to rise on an evening.
If I was using Tresiba I would be like you and having multiple hypos every night because it just can't accommodate the difference between daytime and nighttime needs. It gives you a pretty uniform release of insulin over about 36hours so each dose overlaps the previous one. People on Tresiba need to adjust it so that they don't get any night time hypos and then make up for it with daytime changes to ratio and corrections. This is OK if your daytime and nighttime needs are not too dissimilar but is impractical if you have a big disparity in needs.

If I were you and you hadn't been given the advice to split your Levemir dose into morning and evening or adjust those doses to what you actually need, rather than keeping the split equal when you tried Levemir before, then I would be asking to go back to Levemir asap, but in the meantime I would do as @helli suggests and optimize your Tresiba dose to prevent night time hypos by reducing the dose and then firefight with your quick acting insulin during the day, until you get the Levemir back. Ultimately a pump may be the answer but getting one of those will likely take much longer that getting Levemir prescribed and you may have resolved the problem or at least dramatically improved it by then.

Do keep asking questions and sounding us out as learning to adjust my Levemir from people here has been instrumental in me managing my diabetes really well but most importantly improving my confidence and quality of life. Hopefully you will feel the same in a few months.
 
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Hi Ivy.
That sounds like a lot to contend with. I am t2 so can’t offer any real suggestions but what I can do is page some others to this thread who may have more experience of managing hypos and insulin.

So calling @rebrascora and @everydayupsanddowns to the thread!
 
I have replied to @Ivytype1 's other thread along with other Type 1s. I wonder if it may be possible for a moderator to combine the two threads to save confusion.
 
.

One of my main issues at the moment is night-time hypos. It is at the point now where I will have 1-5 hypos every night. I wake up and treat the hypo as normal and then my blood level never seems to maintain and will drop again in the night. Obviously as you can imagine this has had an adverse effect on my sleep quality and is causing me other issues in my life.

Another issue is that no matter what glucose reading I go to bed on, I will wake up hypo. It doesn't matter if I went to sleep in a good range or even if my blood was high before bed, it will steadily drop in the night until the point I have a hypo and wake up. I have thought about lowering my long-acting insulin to negate this drop but I do not see this issue in my daytime readings. I am on Tresiba and my levels seem to stay pretty stable in the day when I'm not eating etc.
Hi Ivy, and welcome to the forum. I also have a problem with my levels dropping like a stone once my head hits the pillow. In my case, it carries on until about 4am then starts to rise again. I found that Levemir was my friend. I swapped to it so that I could split the dose, and take a smaller amount in the evening, and a larger amount to hold me steady during the day. Currently I take 6units at 8am and 2-3 units at bedtime. There are some nights if I’ve had a couple of glasses of wine, which seems to drop me further and faster, when I don’t take any night time basal at all. (My morning dose has all but worn off by bedtime). The problem with Tresiba is that it has a nice even profile, which is fine if that’s what you need, but I suspect you don’t!
Oh, just after posting I noticed @rebrascora's post drop in. I will go and read the other thread, I may have duplicated.
 
Might be worth trying switching the Tresiba to when you wake. It's profile seems to be most active around eight hours after injecting & then tails off. So if you injected when you wake, it would be least active overnight. So theoretically should help keep your levels up.
Tresiba is meant to be the one with the most even profile, isn’t it? I thought the doses lasted over 2-3 days, and you topped them daily up on a rolling basis, so you’d always got a level and active amount. I researched it when I was thinking of swapping from Lantus, because of my plummeting night time BGs (I’ve replied on your other thread, @Ivytype1 ) and decided it wouldn’t solve that particular problem.
 
Tresiba is meant to be the one with the most even profile, isn’t it?
Even so, its profile shows it being more active after eight hours & less active thereafter. So if taken at say 22:00, it would build to a peak around 06:00. If it was instead taken at 06:00 it would peak around 14:00 & then gently tail off. So would be less active overnight when the OP is experiencing lows. The vertical bars represent 24 hours.

1677101976948.png

It may well be that this isn't enough to solve the OP's issue & split doses of Levemir would be a better solution. But this is something they can try now & see if it helps while trying to get another consultation.
 
@trophywench This is the basal testing link I use and I think others use it too:

https://www.mysugr.com/en/blog/basal-rate-testing/

Nighttime hypos are awful. My pump stopped mine, but I agree with the suggestion above to move your Tresiba injection.I’d also consider trying Levemir again with a reduced evening dose. When I take a pump break, I split my basal and take less than half my morning dose in the evening.
 
Hello @Ivytype1.
While my personal experience is a lot less than many commenting here ... I can't help wondering if when you were changed to Tresiba was it also explained that you need a different mindset and methodology for managing your diabetes with Tresiba. Tresiba could be just what you DO need, as a basal - but with some help and guidance, so you can get the stability and the benefit that Tresiba can bring.

Tresiba's profile is c. 40 hrs. So today's dose is actually topping up yesterday. Therefore, within reason, you do NOT have to take your Tresiba at exactly the same time each day and it certainly does NOT matter whether your routine is for morning, midday or evening once daily basal. Once you have a routine you are just adding to yesterday's dose - at about the same time each 24 hrs. I just do not believe your hypos have anything to do with the timing of your Tresiba. It just needs to be got right first, then left alone for weeks and possibly months, rather than frequent basal changes.

Also, as said earlier, for the vast majority of people our basal need is not constant across a full 24 hours. I have adjusted my Tresiba to give me steady nights, repeatedly and gradually brought my daily dose down until I had a reasonably flat BG throughout any night. Once I'd got that basal stability throughout the longest fasting period (for my circumstances) I set about making sure I started the night around 6-7 mmol/L and thus end there. So if a little below as I went to sleep, I'll have a medium GI snack to nudge my BG up a bit or if a bit high just a modest NovoRapid correction to get back in range and c.4hrs later expect to get a flattish BG for the rest of the night.

BUT, the fundamental point here is that for the rest of the 24 hrs ALL further adjustments must be done by snacking for small nudges up, boluses with meals and bolus corrections for unforeseen highs. UNLIKE more flexible and shorter profiles basals, such as Levermir, I CAN NOT and DO NOT attempt to manage my D with my Tresiba basal. My basal is there to give me background stability for any normal day, with an emphasis (for me) to have steady, hypo free, nights. Management of food eaten, unusual activities or irregular stress (be that unexpected illness, emotional shocks or suchlike) is the job of my bolus NOT my basal insulin. This does need a different mindset.

When I read the opening post to this topic and even without mention of Tressiba specifically, my first thought was that the basal is too high.

Although I'm retired, the one constant thing about any week (or month) is that NO day is the same as the previous day. I have no daily routine; I might plan on being particularly busy tomorrow, then when tomorrow comes frequently something has changed and that day's plan has collapsed. I find Tresiba is great for my circumstances - hypo free nights and make all other D decisions with bolus insulin or food. Sometimes I'm chasing insulin with some extra carbs, sometimes sugar surfing and taking one or 2 extra bolus doses to regain mid-range BG. I resist taking any bolus within 4 hrs of the previous bolus; this isn't absolutely essential, but I do find I can get an unexpected modest BG drop quite far into the NovoRapid 4hr profile. My diet includes quite a high fat content, including cream in any coffee, lots of butter and oil with main meals - so I'm never sure if I've created a slow digestion scenario or at least worsened my compromised digestion behaviour along with my dependency on Creon.

Finally having said earlier get your Tresiba basal sorted first, in my case for nights only (I don't believe I have any chance of basal stability over the full 24 hrs) - I do periodically adjust my Tresiba. Certainly slightly different for summer and winter and right now I'm keeping an open mind on whether I need to lower my 9 daily units to 8.5 units, since I'm starting to regularly end the night a little lower than when I start it. My HbA1c is acceptable at 48 (for someone without any pancreas) and my time in range is close to 80%. My Glycaemic Variability could be better, but far from bad. Of course, I can only really state these stats thanks to the data keeping of my CGM (Libre 2) and can only do the sort of D management that I do because I have Libre 2. On MDI and with only finger pricking my D management would be a great deal more difficult and not really comparable to what I am able to do with Libre 2 (plus Diabox making it real time CGM).
 
I dunno where the instructions are on here so could someone else help me out, here please? @SB2015, @Inka, @everydayupsanddowns, or indeed anyone else

For future reference it’s in the Useful Links thread, and @Inka has kindly supplied the link above.

There’s also this helpful (though slightly mind-bending) graph which suggests a likely activity profile, peak, and duration based on a dose-per-kilo - so you can see how smaller split doses are likely to behave.


Like others, I find occasional basal checks hugely helpful. I spent many years struggling with overnight hypos and general diabetes randomness, and while my diabetes is still occasionally a bit chippy (eg this week!) I have been amazed at how often this randomness can be tamed by a relatively small tweak to my basal dose / profile.

Basal seems to be the bedrock on which everything else (meal doses, corrections, response to activity) sits.
 
I have replied to @Ivytype1 's other thread along with other Type 1s. I wonder if it may be possible for a moderator to combine the two threads to save confusion.

Thanks @rebrascora - I've merged the two threads to keep responses together :)
 
Can I just check that you’re confirming hypos with a finger prick and not just going off the Libre but yes I would drop your tresiba by 10% and wait 3-4 days to see how well that copes then drop it again if needed. If you have a half unit pen that gives you more flexibility.


Also look at what you do earlier in the evening - when is your last meal that you bolus for and what sorts of things are you eating. Sometimes a late meal or a meal that has a late spike can give you a false impression of your BG- novorapid peaks an hour or so after injecting but lasts around 4 hours and can last 5 hours for some people. Also tresiba isn’t great at dealing with irregular exercise so if you exercise or are especially active some days but not others it can harder to manage. My kid went through a phase of consistent hypos 24 hours after he did trampoline class so think about how your activity figures info the patterns.

Stubborn or repeated lows at night are frustrating. Don’t forget to have 15g of slower acting carbs once you’re no longer hypo to help stop the drop. If you’re still going hypo after related 15g of fast and 15g of slower carbs confirmed on a finger prick then your basal will need dropping a lot but do it in stages and give it a few days in between so you’re getting a true idea of the tresiba impact.
 
Hi @Ivytype1 and welcome to the forum. I hope that the ideas above prove helpful.

I am echoing @Thebearcametoo regarding which basal might work for you. I found it difficult using the longer acting nasals as they seemed to require a more consistent lifestyles, and mine varies a lot bday by day, and I had a lot of night time hypos. Initially I switched to a split Levemir with an uneven split which helped me as I was then able to change the morning dose without impacting the night time dose. It improved things but I still had far too many hypos and ended up switching to a pump.

Both systems benefitted from basal rate testing. This always took me longer than I expected as I had to stop due to hypos, but then that just emphasised that I needed to be doing the testing to get basal insulin correct for me, at that time. As other have said this is the bedrock of our management.

let us know how you get on.
 
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