As Carter transitioned to Tresiba I wrote a daily journal entry on my Facebook page ‘How We Live Now’.. I plan on writing a ‘round-up’ blog with regards to why we switched insulin for him and how it went and how things have improved in doing so. BUT, I want to wait until I have a full 30 days of data to really be informative and critique his profiles v’s his old insulin (Levemir) before I write this. This is so the post will be useful to people considering the change of basal insulin and offer some insight into a true transition.
For now, these initial 14 days will help I’m sure (I know I could have done with something like this over the past 14 days – it’s been an interesting, draining journey).
I put a lot of time and detail into those daily posts and I think they will be useful to people who are also considering changing / who are already mid-transition and looking for some support / to scan other people’s experiences etc.. So, before those posts get lost in cyber space I am going to copy and paste them here.
That means this will be a long post, but it’s simply an un-edited catalogue of journal entries copied from my facebook page of day – by – day of Carters Transition to Tresiba..
Transitioning to Tresiba Day 1:
Could have been better, don’t like the random peaks as Levemir is leaving him and Tresiba hasn’t established properly yet.. suppose it could be worse?..
Carter had his last shot of Levemir at 6pm last night (7u).
At 9am he had 6u Tresiba.
It’s been OK I guess?
I’ve not changed his bolus whatsoever. We have seen 2 spikes (for no reason), the 1st I corrected and crashed him (2.6), the 2nd I gave insulin slightly early for his dinner (no extra insulin) and it worked ok.
The Dex missed all the peaks and troughs favoring to run low and flat all day (it’s pissing me right off).. looks great – not accurate..
I am pretty sure the Levemir will be out of his system by now (on the whole), so tonight will be the true test on how the Tresiba behaves as he sleeps. I intend to give another 6u at bed..
Pictures are meter readings and Dex profile. We’ve finger pricked regularly as haven’t been able to depend on the Dexcom so charted accordingly: the 3rd photo is his chart, for me to see what’s going off and look for any patterns over the next few days..
slow & steady.. I have faith that it will be worth it..
Transitioning to Tresiba Day 2:
We had a small hypo in the night (3.4mmol), I gave 4g glucose as didn’t know if he’d continue to drop or how stubborn the basal low would be as am unfamiliar with Tresiba and don’t even know if he’s on the right dose yet.
15mins later he was still 3.4mmol so gave more glucose (4g) and woke him to drink, take some protein and pee – having him walk around should help.
It did, he was 4.8 within 20mins. But then he spiked HIGH!! 8mmol! Administered 1u corrective novarapid that took almost 1hr to bring him back into range.
Obviously this spike was related to food – I overcooked the correction (my bad).
But; we keep seeing these spikes unrelated to food like as if the Tresiba is having gaps, is it just not settled yet?
Will he smooth out? Part of me wants to increase the daytime dose but want to avoid hypo’s at night so am worried about doing that, and my knowledge is telling me to wait a few more days?
If only I’d have not given the extra glucose I think he would have come up nicely and maybe stayed stable, or maybe not – we’ll never know..
Also, his baseline is much higher than I want it to be today, should I increase it by 1unit or still too soon?
How long do you typically see from administering insulin to impact? Should I fast him?
Transitioning to Tresiba Day 3:
Things have been steadier today. I can see the light a little bit more, although Carter is still having higher blood sugars than we are used to, I’ve learnt that he doesn’t need correcting like I have been eager to do. The hypo he had earlier today I caused by giving him 0.5u novarapid and I’m tipping that (by the rate at which he dropped), he would have come down by himself if I’d have waited a while. I don’t like seeing higher numbers but am not wanting to increase the Tresiba too much in this transition period because I fear we could run into trouble once it’s fully established in his system and it clearly isn’t yet.
I also think in the longer term we may end up reducing Tresiba, it seems pretty shit hot! I’ll tell you why: with Levemir I knew that 0.5u would drop him just a little bit back down to 3.8-4.4 if he was above 5.5 but with Tresiba that same 0.5u is dropping him into his 2’s – TOO LOW! So I need to back off and let the insulin stabilise and then take it from there.. Clearly the novarapid isn’t having to do as much work with Tresiba which shows how effective it is v’s Levemir. So, yeah; maybe I will have to reduce it ONCE I’ve got him more stable..
ALSO I’m still not having to give insulin for protein. NONE!! So again; this could mean he’s taking too much OR it could mean that Tresiba is just awesome.
Since 10pm Carter’s blood sugars have been steady at 4.4 (FP) and if last night is anything to go on, I’m hoping he will stay there.. We will see..
If he goes higher I’m not going to correct him and I’ll just watch what happens for 1 night. Keeping correcting him is throwing me off scent because then I can’t see how the insulin is behaving; because the Novarapid is taking over (and working sooooo quickly). 1 night won’t hurt and his A1c is good enough to allow him some leeway whilst we dial in this basal.
I still have hope this is the right move..
Today (although on paper still looks spikey) is better. Mean average 4.7 but (although improved on yesterday) SD is still 2 thanks to the hypo I (again) caused with the corrective shot.
We will get there – battle on my little Warrior 💙
Transitioning to Tresiba Day 4:
Today has been better again. I think the Tresiba still hasn’t fully ramped up in his system but today is the first day we haven’t seen silly spikes or crazy lows which is fab AND he’s STILL not taking ANY insulin for protein!!
His numbers are still not as good as we expect and have been achieving so I’d like to give him some more fast acting until the Tresiba is at full capacity: to prevent the numbers above 5.3 BUT I can’t because 1/4u is still dropping him too much and we can’t get dilutent fluid here in the UK! Although I think it’s worth a phone call to novo nordisk tomorrow (which I will do)…
His Mean average is stabilising and the SD coming down (huge reduction from the past 2 days) so am confident that we are over the worst.
I also reduced the Tresiba at bedtime tonight from 6u to 5u to see if it prevents night time hypo’s. I can live with him sleeping at 3.5mmol BUT there’s a difference between sleeping at 3.5 and being 3.5 with hourly 2g glucose shots to remain at 3.5. So we will see what happens there!!
It’s been a good day, Greg has done all diabetes management today and possibly a pre-bolus at dinner would have prevented the spike to 6 but there’s always ways you can look back and critique when you see it on paper, I think he did a fab job!
Oh, and although wildly out this morning – singing all the way to Manchester that he was high; regardless of calibrating it in the car, the Dexcom has been accurate since then!! It lives!!! Yay!
Looking forward to day 5 and the Xdrip/Nightscout set up!
Transitioning to Tresiba Day 5:
Today I’m left totally scratching my head, wondering if I’ve made a mahoosive mistake and if I’m even cleverer enough to actually do this. For him.
Tresiba is kicking my ass today! Kicked my ass – all night and as I write this, is looking like it’s gonna kick my ass again tonight too.
I’m told it will be worth it but right now: I can hear the Levemir in the fridge (getting warm) whispering ‘I’m easy – pick me’ … and I’m struggling!!
Carter was low alllllll night long.. Not emergency low, never below 3 but requiring hourly glucose and still dropping back down. Then, for unknown reasons at 9am decided to spike to 5.5. He remained higher allllll day, (id reduced his Tresiba by 1u) and even required a corrective dose this evening.. AND it looks like he could have done with some novarapid to cover protein today too.
However, exactly the same as last night (on reduced dosage); 1hr ago he was 4.8 coasting along nicely and right now (3am like clockwork) he’s dropped right down to 4.1 and I just know he’s gonna hypo, I can put money on it!
Which leads me to think (from my charting) that Tresiba is having a 7hr peak in him. I didn’t think it was supposed to peak? And if it does, it also means by law of numbers; that by 13hrs it’s gone.
I talk about this because people never show you the bad, they don’t show you how hard it can be sometimes.
Carter’s Diabetes is my nemesis and my job is to keep him safe from it, to manage it perfectly to preserve his health.. That’s no easy task. So, if me sharing anything and everything helps just 1 person on the same journey as me; then that’s good enough for me. I want to help people because I know just how bloody hard and scary and lonely it can be!!
I will always be fully transparent with his profile and diet and results, because that’s how you a) help people and b) help yourselves too.
I don’t always have to share the good and the easy, ok it’s nice and it’s a proud moment when it’s perfect. Yes it’s nice for people to think that you’re expert and winning, but I don’t care what people think of me. I care about my sons health and longevity and if by doing this I can help someone else along the way then that’s even better..
I have no competition, my only competition is carter’s diabetes and the hold that can have over his health and life.
I want to do better for him, I hope I can manage that..
I am hoping tomorrow will be better, I’m willing to give it longer because the benefits of Tresiba long-term are worth it, but I won’t jeapordise his control for much longer if it’s not working..
So, I’ll whisper back to the Levemir in the fridge (getting warm) to ‘hush’ for now and I’ll go fix my boy’s peri-hypo and with hopes that tomorrow I can be better – for him..
Transitioning to Tresiba Day 6:
Feels like a life sentence – will it ever end? When does transition end and bad control start?
Tresiba is definitely in his system now, he’s having far too many low’s so I reduced his dose. This caused his requirement for insulin to cover protein to return and I missed it; so we had some higher numbers that I’m pretty sure I could have prevented (and will tomorrow).
He’s also much more sensitive to his fast acting insulin on Tresiba: 1/2u would normally drop him 1-1.5mmol and now it’s doubled! He comes crashing down hard – why?
So, it’s tricky, it’s like relearning everything all over again..
I have noticed a definite peak with Tresiba: by 7hrs it’s at its most effective, therefore I’ve changed his basal times to help keep him smoother AND brought his evening dose right back to 6pm as he was with Levemir and we’ll keep the morning dose at 8am.
Also I’ve reduced his evening dose right down to 4, to prevent the hypo’s at night and will increase the daytime dose to help keep him steadier through the day and hope that this helps.
I expected to see some stability and improvement by now. I’m frustrated that I haven’t. Hopefully these changes will help and we’ll keep plodding along, because it should be worth it. Please let it be worth it…
Transitioning to Tresiba: Day 7
I think we may have turned a corner!!
I scrapped all advice and went back to what was working with the Levemir and it seems MUCH more effective. (Why did I not do that in the first place)?..
So, we’ve corrected the over night hypo’s and other than STILL being super sensitive to his Novarapid on small corrections (causing crazy hypo’s – maybe heat related too?).. We seem to be better.
So, he’s taking only 10 units now. 6 @ 8am and 4 and 6pm and it was so lovely to not be up all night for a 4th night correcting hypo’s.
We just need to dial in everything else around it now, the novarapid is pungent on Tresiba. Even with a meal, it’s dropping him too low BEFORE he rises from his food, yet he seems to still need the same amount later on so I’m gonna have to tweak there..
You can see the erratic drops easily on the charting I do..
Dr Bernstein recommends Actrapid to overcome this but we can’t get that prescribed here (DOH Protocol), their solution is pump therapy which we don not want. Anyway, we’ll plod along and hopefully work things out best we can.
I also ran his Dex profile (to see how accurate my calculations are in comparison – very accurate it appears – really happy with that) and even though there’s a huge SD and the % of hypo’s is far too high than what we are used to – and want. Overall, the transition has not had as much impact on him as I thought – we can live with that..
Now it’s time to do some fine tuning, really get this dialled in.. I can see the light..
Transitioning to Tresiba: Day 8!
Things have been better today. Through the night Carter ran higher, typical of a higher fat meal (chicken thighs) that we ate late in the evening (lots of jobs meant we were late eating). Usually I’d have been on top of that but it’s a 1st being on Tresiba and didn’t want to give extra insulin not knowing how it would affect him, so I battled it with Novarapid anticipating him being sensitive to it like he’s been lately but no, because diabetes is a d*ck; it was like injecting water – typical!!! So he was a bit higher but we got there in the end and never above 6.5mmol thankfully!!
He’s been smoother today, no readings below 3.5 (which means technically not hypo at all) and apart from missing his protein spike this evening (I didn’t think he was going to have one – but he did – much later than expected) as didn’t get the insulin in him early enough, he went up to 6.2 but he came down fine and didn’t drop low at the bottom end which he has been doing lately so it’s nice to see that not being as prevalent too!! I haven’t been liking how sensitive he can be from 0.5u, it’s been difficult to manage!!
Still, at least now I know that I need to bolus for protein again and can with smaller doses and not crash him, I can anticipate it before he rises.. It’s been crazy difficult not needing to dose for protein or dosing and it being fat too much and it’s completely thrown me, hopefully that’s settling down now and we can find a steady pattern and rhythm again..
So, apart from these small teething issues, today has been a lot smoother and easier; which is a huge relief!! I continued with the 6u and 8am and 4u at 6.30pm that I’d planned and it has been working for him.
However, tonight, in complete error and for unexplainable reasons: I gave him 7u – absolutely no idea why, probably because he was rambling on about something and rushing me to go play and show everyone his hair, or maybe I just lost my mind (I was just explaining to Greg that he was on 6 and 4 and literally injected him as I’d said it and realise I’d given him 7 – arrrghhhhh!!!
So, for whatever reason; he had more than he should have so that might be fun & games in an hour or so…. I gave him some protein shake to try and anticipate any long, slow, persistent lows and am hoping it will help. I also have plenty of glucose ready and have been sleeping in his room so I can check him regularly anyway; so we should be ok. Just my luck that I’d do that though!! I’ve never done anything like that before. They say you will make a mistake at some point and I was hoping I never would, it was scary how easy it was to do AND you can’t take out injected insulin when you’ve administered it, I’m just relieved it was only 7u but it’s frustrating me that I did it and that we are just finding our groove with Tresiba and I will throw it now.. Idiot!!!
I’m hoping it will have minimal effect and I know can deal with lower numbers; we’ve had our fair share of lows and sleepless nights this past week so what’s one more anyway?..
But, on the whole, it looks like things are getting better. His SD is down to 1.2, I like it under 1 so I’ll take that for now, ok his mean average was higher today but it wasn’t his baseline causing it, it was unmanaged protein spikes causing the higher numbers (my fault again). So now I know, I can deal with that too.
So, we’re looking good, maybe at a stage where we can start fine tuning – and stop making silly mistakes!!
Tomorrow I need to be better – for him! Tomorrow I will do better!!
Transitioning to Tresiba: Day 9!
Today has been much better. The extra units I gave Carter in error yesterday seem to have gone nowhere. I asked him if they were hiding in his feet and maybe I should tickle them to get them to come out and although he did much giggling, the missing insulin never reared its head. Luckily! I was anticipating hypo’s all night and even over treated a small low that I wouldn’t normally treat as he sleeps (3.7), because it’s not technically low for sleeping. I gave him enough glucose to raise him to 5 as I expected to be fighting against the Tresiba and no, no fight. Instead he shot right up to 6.5 (great). I didn’t correct him as was still expecting the extra Tresiba to bring him down and although it did, it was very slow and gradual. It was almost morning before he had any signs of a hypo, he dropped to 3.4 at 6am but I didn’t treat immediately, I watched his Dex for a while to try and work out what was happening and sure enough, he came back up by himself (confirmed with a blood draw).
Carter slept right through to 8am where he took his morning insulin and has breakfast. It was lovely to just let him sleep and rest thoroughly, he’s been awake a lot in the night these last 8 days with treating lows so I was really happy I could let him just sleep. I of course was awake a lot, I never seem to be able to sleep well and when I did drop off, I was awake an hour later from an awful dream, it took me a while to settle back down again.. urgh!
Anyway, he was lovely and refreshed this morning, instead of being groggy and grumpy, he was all fluffy, happy and chatty AND he has been steady ALLLLL day long. It has been an absolute pleasure!
Today Carter has decided Tresiba is called Tequila (remember the song?).. So we’ve been calling/singing Tequila instead of Tresiba and it makes him laugh.. Kudos to Greg for reminding him of that. He said to him ‘have you had your tequila shot dude? And he just stared at him and set about giggling – it’s fun to find these little things that keep bringing light to a shitty, continuous situation. We all need that…
After breakfast I had to give him 0.5u for protein, I spotted the rise and got the novarapid straight in which kept him steady. He didn’t require any extra insulin after his lunch – he’s had a busy and very active day. At dinner this evening (which we ate very late – we’ve had a busy day and evening), he only took 1u with his food. I normally always give him 1.5u for his evening meal but noticed the last 2 nights he’s gone low immediately after eating, so I anticipated it tonight and reduced his dose accordingly. He still dropped straight after eating but it wasn’t too low so we watched Dex again and as expected he recovered himself; and as he’d just eaten he continued a slow gentle increase as predicted with the food he ate. I gave him 0.5u for his protein 2.5hrs later but he seems to have still gone higher than expected which makes me think he may need more than I’ve been giving for protein in an evening but I can play that by ear depending on what meal we have and am happy to be able to do that adhoc, it’s no biggie and it’s easy to predict now I know his baseline seems steady.
I’d like to run a fasting basal test for evenings just to check I have that right and it is just food dependent as to if he does/doesn’t require extra/less insulin. I will speak to him about that and we will work out a day where he eats early and then fasts from 5pm so I get a good idea of what’s going off which will give me better predictability on a night. It’s not nice asking your 9 year old to fast, you can guarantee when it comes to not eating – he’s ravenous. But, for the sake of 1 night v’s the benefits it will bring, in hoping he will be compliant, he’s been very good about this in the past when he’s fasted for Levemir testing – we will see…
At the moment he’s rising higher at around midnight and then dropping gradually through the night. shouldn’t do that, he should remain flat and stable – that’s how you know the baseline is correct. Having to eat to keep him steady is a sign the baseline is slightly too high and having to correct higher numbers is a sign he’s not taking enough; so, we’ll do some fasting and testing and we’ll work it out properly. For now, considering we’ve just had an insane week and thrown a brand new insulin into our well oiled machine, I’m quite happy with how things are working out. I’m certainly a lot happier than I was 3 days ago when I was left wondering what i’d got us into.
Today Tresiba has shown us how amazing it can be and I’m grateful for that.
Today my boy was able to learn, play, paint, exercise, football, basketball, build, gardening, wrestling, trampolining, run around with his friends, sleep and eat without worrying about diabetes or constantly checking/treating his glucose levels. Today he got to be a 9yr old boy again and that is an incredible thing!
Hopefully we’re on the home stretch, lets hope for it to continue and to start seeing some benefits to this transition.
Tonight I go to bed a much happier and positive T1Mommy 💚 #tresiba #baseline
(You’ll see from the photos that the Dex ran slightly out at times, my chart displays blood draw readings only so is a truer profile)..
Updt: Much better night with Tresiba. Blood Draw confirms 3.5 with the Dex hypo alert at 7am, gave 1/2 glucose tab and he’s now 3.8, as he’s sleeping we don’t treat that. It’s a safe number. Tresiba is behaving much more predictably now. Yay.
Transitioning to Tresiba: Day 10!
Later than usual as we’ve built the xdrip and spent all night trying to get Nightscout stable (still trying), it’s not stable yet.
One thing that is more stable (thankfully) is Carters baseline!! Yeeeehaw!!!!
Ok, it’s lower than maybe it should be and he’s taking glucose when trampolining and running around with his friends (he shouldn’t have to do this: his baseline should keep him steady but he’s dropping a bit). BUT, it’s a LOT better than it was AND he was steady all last night. He still gradually dropped by the morning BUT no glucose this morning and he’s been fine.
So, yesterday I didn’t use any corrective insulin but used 3 x rounds of 4g glucose and although his mean is 4.3, his SD is 1.5 (would prefer it at 1). So we keep plugging away at it.
I’m going to reduce his evening Tresiba to 4 (from 5) maybe tomorrow. And we are going to do a fasting check tomorrow too (I discussed this with him and explained why we needed to do that and he was very compliant). It’s not easy fasting a 9yr old, but he’s very understanding of his diabetes and prefers feeling healthy and knowing he’s stable than being up and down and taking ‘anticipation glucose’.. He’s admirable with he just does what it needed – nice work dude!
Tresiba is smoothing his line right out now we are regaining some control and predictability. On paper it looks spiky but in reality it’s pretty smooth. The Dex wasn’t much help yesterday, it was low a lot and then needed a sensor restart in the early afternoon so was off for a while, plus it doesn’t help when Carter is wrestling round and playing ‘nerf wars’ with his friends.
Hopefully today he will play calmer and I’ll get a good reading from the Dex / nightscout to share with you.
On a separate note: the nightscout is a game changer! Live readings direct to my phone – wow!
I’ve added the photos anyway so you can see his profiles but the most accurate picture for yesterday is my chart as it contains each real blood draw.
I have had to reduce the amount of insulin (bolus) he takes with lunch too as he was dropping too fast v’s his food and then requiring a snack / glucose to feed the unrequired insulin I’d given him (1.5u) so, we just remove that and he took 1u instead. You shouldn’t be in a position where you’re having to feed insulin.
So that’s Day 10, it’s all about fine tuning now and I think maybe if I don’t see improvement, I’ll drop his morning dose down to 5 too (after trying the evening reduction as mentioned above) to avoid these daytime lows. I just don’t want to throw him the other way and be chasing highs – it’s a fine line!! But, the only way I’ll know if it will be of benefit or not is by doing it, watching & waiting a couple of days to see how it behaves in him.
For today, we continue as yesterday, watch and chart and I’ll report back..
Falling in love with Tresiba more and more each day! #baselinebaby #tresiba 💚
You don’t know how much of a relief it is to be able to share this with you after 10 days! Today is day 11 and we are just starting to find our groove.. #relief #worthit
Transitioning to Tresiba: Day 11!
Day 11 was better. I also learnt a lot:
For example: Carter’s ISF has increased since being on Tresiba! A lot!
With Levemir 1u of novarapid used to drop him about 3mmol. So, if he was 5.5, I could give him 0.5u and he would be fine and come nicely down into a safe range (around 4mmol).
NOW on Tresiba: 1 unit drops him almost double the amount. So if he’s under 6mmol, I can’t use a 0.5u correction because within the hour, he’s dropped to 2.6 and requires glucose to recover.
Also, the amount of glucose he requires has changed:
1g glucose usually raises him by 0.3mmol so 1 tab (4g) increased him by 1.2mmol.
However now: 1 tab (4g) takes him nicely from 2.6 to 4.8, even 5mmol! So that suggests 1g glucose raises him by 0.5mmol! So when I’ve been treating him lately and experiencing the rebound highs – I now know why! The first 20mins he climbs up to 3.5-3.6 and then he will continue to climb over the way to the hour point and (last night), reached 5.2 before he settled back down at 4.8! Wow!
I’m also giving less insulin with meals! For as long as I can remember he’s taken 1.5u with his meals (novarapid) BUT lately he’s dropped low before he’s risen with his food. So with some meals I’m having to give only 1u to avoid a peri-hypo with food.
It’s all changing!!
So, now I’ve worked that out I can stop blaming the basal for what the bolus did and stop being so aggressive with treating higher numbers. I want to be BUT I simply can’t with him being so sensitive to 1/2unit corrections.
So now the game is set, I have to work out a way to keep him under 5.5 so he doesn’t need these small corrections AND get more confident with administering 1/4u shots for even smaller corrections.. fun!
You’ll see the hypo I caused on his chart (2pm), it was simply from a corrective shot of novarapid: I expected him to be rising but instead he dropped through the floor.. So, without jeopardising his control, I need to ease back on these and watch: if he continues to rise then I can treat at that point. There’s nothing worse than treating higher numbers and then having to give glucose to counteract the insulin – tricky!!!
So, overall it was a much better day. The Dexcom and Parakeet (nightscout), were all over the place resulting in many more finger pricks for carter than he needed. The graphs from those devices are so wonky and inaccurate it would be confusing for me to share them with you. It doesn’t even look like a chart, looks like a sound wave 😩
It’s also frustrating that we pay so much money out on this equipment for him and I can’t even rely on it – especially at times like this when it would be very useful!!
Please, please let it start working properly.. I can see me calling it a day soon if we keep running into days like this!!
But, my chart IS accurate as to his blood draws and does show a much calmer day (minus the crazy hypo).
So now the game changes (again): it’s all about fine tuning the basal rate now: to keep him steady at a safe baseline through the night (no drops) and steady enough during the day to avoid needing micro-corrections (that are still too strong for him).
So we increase (slowly) the Tresiba at night, watch and wait 2-3 days, chart, find the pattern and plan our next move from there..
I have faith it is worth it, we are already seeing much better results, I look forward to what it will be like when it’s all set and working properly for him!
1st photo is my chart, 2nd photo is the Dex chart (slightly inaccurate at times). His hypo (2.6) was at 2pm, the Dex didn’t pick it up (fast drop) and then nightscout isn’t even readable for yesterday. I hope it will get better, I currently feel a bit like I’ve just wasted a ton of time and money!! Fingers crossed!!!
Transitioning to Tresiba: Day 12!
We’re getting there now. Carter remained steady and stable all day & night, I was able to predict the protein spikes and treat where necessary and he was able to play out without dropping too low.
We are late again which is why he was higher through the night, as I knew it was from food (slow metabolising protein and fat), I was able to give insulin confidently and I knew it would bring him down gently (luckily I was right).
I do think the Tresiba should be increased further at night but because we are late didn’t get a true reading so don’t want to act on that from guessing as our normal routine doesn’t involve eating late so in those days, it may drop him too low.
So, I need to fall back into our standard routine, cook earlier instead of spending all my days decorating (I’m in a race against my ending down time to finish decorating my bedroom – i go back to work next week) and when we have our routine back I’m sure we’ll get different readings..
His lines are softer and smoother with Tresiba, he requires less fast acting insulin which is good. Now we have some predictability I can anticipate what will happen next and act accordingly.
Things are going well.
We also have the nightscout now which (now it’s working properly), helps because although it works in the same concept as the Dexcom, it shows me how much/fast he’s fluctuating and, so far, has been pretty accurate..
I didn’t realise just how delayed the Dexcom was until we set nightscout up – it is proving very useful!
I am going to slightly increase carter’s evening dose of Tresiba and feed him earlier for a few days and see what happens. Other than that, I’m pretty happy we are doing good on the new insulin.. AND no more nighttime hypo’s, we just need to keep him close to his recommended baseline (4’s) now rather than being in his 5’s!!
Let’s gooooo!!! #tresiba
Transitioning to Tresiba: Day 13!
We ate late, Carter was higher through the night due to protein/fat NOT his baseline insulin being too low. I am not willing to increase it further at this point as when we don’t eat late he will be considerably lower. I chased the spike with fast acting insulin and brought him back in to range.
As far as his blood sugars for the day – I have been really happy with them, he’s stabilising nicely, the Tresiba is doing it’s job, he’s much more steady and taking less insulin. I don’t think w have things 100% and I am discussing a fasting test with him (he insists he will do it and then is always starving lol), but for now, I am pretty happy. We need to tweak to smooth his line out and aim for a flatter line..
We seem to have nailed it through the night and early mornings but after lunch and especially into the early evening he is higher, I don’t want to blame the baseline for what the bolus is doing so need to look closer with less food on board. Bringing the timing of Tresiba back to 6.30pm will also help as it may offer help with his protein from the evening meal. I will know for sure in a few days after monitoring.
Transitioning to Tresiba: Day 14
This will be the final day I Journal this transition but of course I will continue to chart and monitor him for the foreseeable future. I always chart but right now these charts are valuable to help me tweak his basal (Tresiba) so I know it’s working properly for him and that it will keep him flat and as close to his target range 4mmol as possible without food or insulin.
Today was a good day, he was fairly stable as it is so I am pretty happy with it but I haven’t seen the flat lines typical of Tresiba yet so I know I have improvements to make for him.
I think some of the issues lay with the bolus and protein coverage which is not easy to mimick with such a strong and fast acting insulin like Novarapid, a slower, longer acting insulin like Actrapid would be more suitable and marry his food profile closer but we are still unable to access this on prescription in the UK.
But, as you can see, it’s taken 14 days and we have a level playing field again. OK, it’s not as flat or predictable as he was with Levemir but I have confidence it will get there now, I am starting to find some normality and predictability with Tresiba so will continue to monitor and work with it.
I did increase the dose, he is now on 7u AM and 6u PM, I don’t think he needs more, I think protein and the fact that we’ve been a little off our routine with decorating is causing some issues and will hopefully see those resolve with little effort.
I will write a more strategic post about this after I have a full 30 day readings and charts to write a more analytical and informative post.
In summary, it’s not been as hard as I expected it to be changing Carter’s insulin. I was expecting it to be easier but then when I realised it wasn’t going to be, I expected it to be a lot harder than it was. It’s been ok. We haven’t seen crazy numbers and I’ve managed to maintain a decent mean average for him, OK his SD is a bit insane and we’ve had too many hypo’s but I am aware of it and working on it every single day. Some days it’s drove me mad and other days I’ve had false hope that it’s OK now and I was wrong. The insulin requires some respect, it is strong, but it is effective AND it does keep him steadier in the night with less ups and downs typical of Levemir. I think I can see the potential with it and am looking forward to seeing some flatter lines.
I would recommend Tresiba as a T1Mom, I would say it’s worth trying but it’s early days, there are far more knowledgeable people or T1’s who have much more experience with it who could advise you further. Check out some online forums and groups. Speak to people and your Drs, but I’d definitely consider it. I quite like it for him and he is happy too.