Type 1 - basal question. (Low sugars)

[laneygirlfriend]

Hi everyone,

I have posted here before and received really good advice and now I have another question.

I live with my sister who is Type 1 diabetic and recently she has been having troubles with her sugar levels and struggling.
The issue is that her levels are going down consistently all day which scares her because she is afraid of hypos. Today 4 hours after breakfast her levels were still going down gradually. They went down from 7.7 to 6.4/5.8 (took two readings) in an hour.
It seems like a basal problem but she has been reducing her basal with seemingly no effect? She reduced it from 10 to 8 units after speaking to a diabetes nurse (she takes degludec) and still seeing the same. She had a snack in the middle of the night (no insulin, 10g carbs), her level went up to around 9 and then when she woke up it was 6.6, reduction of more than 2 levels. It would be better if it went up slightly in the night instead of reducing (say going to bed at 6 and waking up at 7.5) because of her fear of hypos. Otherwise she will need to eat a midnight snack ever day forever.

So, I'm wondering is it possible to need this little basal? Before all of this happened, she was on 17 units! now 8 which is less than half and it doesn't seem to have changed anything. Is there anything else we could try? Does anyone else here take low amounts of basal insulin? Is it possible to only need 7/6/5 units of basal?

 

[Robin]

I need very little basal. I use Levemir, and take 5 or 6 units in a morning, and between 2 and 3 at night. If I've had a couple of glasses of red wine, I’ve experimented with no basal at all at night, and my levels have been fine. The consultant thinks I might be producing a small amount of endogenous insulin still,( a lot of Type 1s do, apparently, even if they’ve had Type 1 for years, there was some research done at one time, but I’m afraid I haven’t got the reference at my fingertips)

 

[Mumpie_olgran]

Hi
I'm not very qualified to opine on this as I'm still relatively new but I'm pretty sure there are forum members with very low basal needs, yes. Sometimes even as low as 1 or 2 I believe.
So I'd suggest she keep querying with the nurses to try and get the levels right
Good luck

 

[pawprint91]

Hi @laneygirlfriend, your sister is lucky to have you!

How long ago was she diagnosed? I only ask as she may still be in the honeymoon phase and need less basal. When I was first diagnosed I was on 20 units of levemir a day, which dropped my levels insanely. Over the course of nearly a year I've reduced right down and come slowly back up again as a split dose to 11/12 depending on my activity levels.

Regardless of when she was diagnosed, is her basal one that lasts 24 hours? (I don't recognise the name you mentioned.) If not, could she ask to go onto one like Levemir that allows a split dose, that way she could have a little more for the day and then have a lower dose (or none if that's what required) overnight, and she may feel that she has a bit more control.

 

[Robin]

Regardless of when she was diagnosed, is her basal one that lasts 24 hours?

Degludec is the generic name for Tresiba, so yes, it is a very long lasting one. I found I needed Levemir so I could split the dose and have less at night because that’s when I needed less. A 24hr constant one wouldn’t work for me as I dip as soon as my head hits the pillow, then rise again from 4am.

 

[laneygirlfriend]

Thank you all, that's reassuring me. Maybe I just needed to hear that others have similar experiences? For some reason it was confusing me that the basal dose could be so low. Like it wouldn't be "doing" anything and she would end up with high bgs and ketones.

@pawprint91 thank you, the name of the basal is Tresiba degludec, its taken once per day. She was diagnosed 10 years ago but she recently went through an illness & bad hypo which seems to have thrown everything off.

I will ask her to talk again to the nurse/hospital team. Hopefully she can get an appointment with the psychologist too to try to help her fear with the hypos.

 

[Lucyr]

So, I'm wondering is it possible to need this little basal?

Yep, some people don’t even take any basal, or take only 1-2units

 

[laneygirlfriend]

Thank you Lucyr! I will tell my sister about all of your experiences. She will talk to the nurse again and hopefully keep making small incremental changes. I'm really hoping she can become less stressed out over the next few weeks as it really hurts me to see her struggling so much with her T1 diabetes. So I really appreciate people taking the time to respond to my sometimes silly questions - I know my own knowledge of T1 is still very basic and lacking!

 

[pawprint91]

Thank you Lucyr! I will tell my sister about all of your experiences. She will talk to the nurse again and hopefully keep making small incremental changes. I'm really hoping she can become less stressed out over the next few weeks as it really hurts me to see her struggling so much with her T1 diabetes. So I really appreciate people taking the time to respond to my sometimes silly questions - I know my own knowledge of T1 is still very basic and lacking!

No question is silly - ask away! The fact you are willing to ask and learn is more than enough. Wishing your sister well!

 

[Tdm]

Yep, some people don’t even take any basal, or take only 1-2units

I only need 2 units abasaglar...was diagnosed aboutca year and half ago

 

[everydayupsanddowns]

Sorry to hear your sister‘s levels are messing her around @laneygirlfriend

Tresiba has a bit of a lag when you change doses - because of its long action. It can take 3 days or so for any adjustment to settle in, so some forum members on tresiba find it better to wait a while between adjustments.

If your sister is unsure whether her basal still isn’t set quite right to cover the 24 hours, she might want to run basal tests as described here:

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!

www.mysugr.com

Hope she’s able to get her basal adjusted to match her needs soon. Basal is the bedrock of my diabetes doses, and meal ratios/corrections don’t work right if it’s out even by just a bit!

 

[Proud to be erratic]

Hello @laneygirlfriend,
As already said in post #11, Tresiba (Degludec) lasts over 40 hrs and consequently changes in basal doses do take a while to have an effect. Certainly 3 days and can be a bit longer. This makes it very different to other basal insulins and does mean that the management of bolus insulin and Tresiba needs a very different process.

People's basal needs are simply not constant across any one 24 hour period. But Tresiba is releasing insulin at a very steady state, hour upon hour. So users of Tresiba can only optimised their basal for part of the 24 hr day. I have optimised mine to give me steady nights - no hypos or even near hypos. It took me 4 or 5 weeks to arrive at the best dose for me at night and then it's been simply brilliant. I do need to adjust my Tresiba a small number of times in the year, certainly a slight decrease once the warmer weather kicks in and increase for late autumn.

The consequence is that I MUST manage my day time using bolus and/or exercise/activity to correct highs and snacks to counter daytime lows. I CANNOT alter my basal to help daytime management of my D. I can understand that if someone has been on a shorter profile basal, such as Levermir, for several years and got into the habit of altering basal doses frequently it will feel slightly counterintuitive to ONLY adjust bolus dosing and to leave one's basal alone. But this is workable - certainly for me. It did initially need a change of mindset after I came off Levermir - but now 2 years on I would struggle to go back to Levermir. I eat a varied amount of carbs each day, perhaps 150gm if a no lunch day and maybe 200 gms including lunch. I tend to have a similar breakfast of 60-80 gms of carbs every day, but all other meals and snacks are pretty varied. Although I'm fully retired every day is different, ranging from full on busy outdoors for all available daylight hours, to the odd very quiet and sedentary day.

I don't need to specifically do basal tests - because I only want to optimise my night time basal. I just need to look back at the last few nights from my CGM reports to see if my night basal needs a small tweak. So I have a natural fasting period from after dinner until breakfast. Even when I've found myself high at bedtime, for whatever reason, and chosen to take a bolus correction, I can see on my graph the consequence of that correction over the following 4 hrs and then a steadying (levelling) of my BG.

Dawn Phenomena has been affecting me and causing a spike as I wake up; but even that is manageable: if I know my day is on a slow start I add in a bolus correction, but if I know I'm going to be very active I don't correct - knowing that activity shortly after breakfast will take care of that higher start. I keep my CGM alarms set relatively high at 5.5 and use that alarm/alert to monitor much more rigorously and take a small snack to fend off a falling trend. My last HbA1c was 48 and I achieve 70% TIR. I rarely go truly hypo and infrequently get as low as 4.0. I do allow myself to go above 10 for modest periods - sometimes longer than I might wish, but I'm still working out the finer points of when exercise/activity will help, rather than a small correction dose; I would rather be a bit high than over-correct with both bolus and exercise. It took me a full year to get off the low / high / low rollercoaster and those lows and highs were very extreme. I really don't want to return to those days of multiple hypos - so monitoring and restrained response have become my norms, thanks to CGM. My graphs are far from perfect and 100% TIR in any one day is noticeably rare.

My world improved thanks to (then) Libre 2 and has further improved since I started on Tresiba AND realising I needed to keep my Tresiba dosing fairly fixed.

 

[laneygirlfriend]

Thank you all so much for the detailed information! It's so helpful to hear perspectives from others who take insulin because sometimes it can feel like my sister against the world who all don't quite understand.

She has made changes to her Tresiba over several days to try and understand the full effect of the change - 2 weeks ago she was at 10, changed to 9 last week, now changed to 8 for the past 2 days. So she is trying with advice of her nurse to change it gradually. We will keep an eye on it.

@Proud to be erratic thank you very much for the post about your experiences. She really DOESN'T want to go hypo in the night so it may be worth aiming for something similar to yours. I will ask her what she thinks. Luckily she has a Dexcom on prescription now which means she can see the effect on bg, although sometimes that can stress her out a bit. Thanks again!

 

[Proud to be erratic]

@Proud to be erratic thank you very much for the post about your experiences. She really DOESN'T want to go hypo in the night so it may be worth aiming for something similar to yours. I will ask her what she thinks. Luckily she has a Dexcom on prescription now which means she can see the effect on bg, although sometimes that can stress her out a bit. Thanks again!

Glad my ramblings were of some potential help. When I changed from Levermir to Tresiba my (former) DSN didn't tell me anything about adopting a different management process. I stumbled into that from a remark on this forum and then researched it further. Like many aspects of learning, it should have been obvious to me, but I needed to have that obvious thing pointed out: my daily dose was topping up yesterday's dose. There is an anology to being the captain of a massive cargo carrying super-tanker; you can change course, but need time to let that change happen. Like the super-tanker captain, there are a myriad of other things going on - wind, tide, fuel- efficiency vs urgency, etc; but that captain has it all managed by a computer program making decisions almost every minute. We don't have that luxury!

May I ask which Dexcom your sister has been prescribed? Was she previously self-funding CGM and if so which? If she is relatively new to CGM, has she been made aware of some limitations to CGMs, which seem to be a little different for different types of CGM?

 

[eggyg]

@Northerner doesn’t use any basal just bolus.

 

[laneygirlfriend]

@Proud to be erratic very true! it does look like naval steering sometimes with her bgs very slowly creeping downwards on the receiver screen like a cargo ship course! 🙂

She has been prescribed a Dexcom ONE which i think is the cheaper one. Before that she had no CGM, only fingerpricking, for years, but because what she used to do now doesn't work with her body anymore her confidence has been knocked. She knows about the limitations of the technology logically but it does scare her when it occasionally reports odd things (this sensor first day was reporting 5s and falling when she was in the 9s!)

 

[Proud to be erratic]

@Proud to be erratic very true! it does look like naval steering sometimes with her bgs very slowly creeping downwards on the receiver screen like a cargo ship course! 🙂

She has been prescribed a Dexcom ONE which i think is the cheaper one. Before that she had no CGM, only fingerpricking, for years, but because what she used to do now doesn't work with her body anymore her confidence has been knocked. She knows about the limitations of the technology logically but it does scare her when it occasionally reports odd things (this sensor first day was reporting 5s and falling when she was in the 9s!)

Thanks for answering. I was first provided with Libre 2 in Feb 2021, after 12 moths MDI & finger pricking. At that time Dexcom One was not available from the NHS. I had a lot of failures with Libre 2 over the next 2 years. At first I blamed the Libre, but I've steadily come to accept that my body and Libre 2 are simply not great companions; many others find Libre 2 works extremely well for them. One big disadvantage of Libre 2, apart from its reliability for me, is that it is not "real time", ie one has to scan each time to get a reading. So that lack of an instanteous answer was a nuisance. However Libre transmits a signal every minute and I found an unofficial app called Diabox which picked up that signal and gave me real time CGM, along with more useful reports, better alarms and alerts and a display of a reading on my sleeping phone.

In April 22 the NICE Guidelines were updated and expanded to make CGM available to all T1s who wanted this capability; NICE also recognised that Libre 2 wasn't ideal for everybody and increased the single offering of Libre 2 to a choice of 4, which included Dexcom One. Dexcom had priced this version to be cost competitive with Libre 2. I was authorised to switch from Libre 2 to Dex One in mid 2022, but the bureaucracy and implementation meant I didn't receive my starter pack until late March. I'm now onto my 5th sensor in 24 days, 3 failures so far; the sensors stopped providing readings after a few days, with ridiculously wrong readings, then intermittent "sensor error, wait up to 3 hours" on screen messages. Dexcom readily replaced each of these, after a 20 minute phone call. I like the real time continuous readings from Dex One, dislike that (so far - I'm exploring options) I can't keep the app permanently awake nor displaying readings on the screen of my sleeping Samsung android phone. And, so far, got similar poor reliability to Libre 2. I'll persist for the full 90 days of the transmitter then review my situation. I might, in extremis, self-fund the more expensive and seemingly more capable Dexcom G7. That will take a lot of soul-searching and money juggling - but reflects how much my life is helped by CGM. Even unreliable CGM.

So my underlying point is do encourage your sister to persist. CGM is still far from perfect for me. But just getting instanteous approximate BG without needing to constantly finger prick is tremendous. I pay more attention to the trend arrow than the actual BG number. If the reading is in the zone of 5-10 I feel it is sufficiently close to allow me to monitor and often take a bolus for food with an estimated correction - without verifying by finger pricking. For me, I go out of my way to avoid going low and accept some high. The evidence is that low and particularly hypo is more dangerous and more damaging in the longer term, than being high from time to time. I sincerely hope that your sister can gain sufficient confidence to feel reasonably safe with CGM; after all, before Dexcom she only knew how she felt and what a tedious and time consuming finger prick would be telling her. Logically CGM, even not ideal CGM, ought to trump just finger pricks.

With the arrival of CGM and consequent better visibility of BG, the HbA1c test is possibly going to end up being superseded by the Time In Range (TIR) criterion of 4-10. With a recommendation of no more than 4% below 4 and no more than 25% above 10 being the current best practice - this seems to reinforce that high (>10) is not ideal, but more acceptable and low (<4) far less acceptable.

A final thought about Tresiba. I appreciate that it's lack of flexibility is not ideal for everyone and time may reveal for your sister that it's less helpful for ladies and monthly hormones. But it has been licensed and in use since 2016, after almost 10 years of development. It is widely used around the world - but that might reflect excellent marketing rather than great acceptability! It does seem to be less used in UK, judging by what I see on this forum and from talking to a huge number (exactly 2) DSNs. Neither of those had woken up to the fundamental difference of Tresiba as a basal and consequent different management strategy. But if your sister can get used to this difference, she might get to feel really happy with it. Plus, someone proposed the change from Levermir for your sister and perhaps they had a strong underlying rationale. In my case some lack of follow-up and understanding by my DSN can be explained by the Covid isolation factor during 2020 and 2021. Could that be the case for your sister?

 

[laneygirlfriend]

@Proud to be erratic she was similarly offered a Libre but then changed to a Dexcom because Libre was not compatible with her phone (turned out that the Dexcom was not compatible either funnily enough, but oh well, we changed to a receiver). Completely agree with everything you've said about CGM - we have learnt quickly that it isn't perfect but I'm hoping that she will become a little more used to it with time and it will really start to help her understand her response to food and insulin, and hopefully exercise etc as well later on.

I think my sister would definitely agree that she also aims for slightly on the higher side of acceptable. She's eating between 20-40g of carbs per meal at the moment and generally lands on readings between 6 and 10, with some occasionally over 10 but only once in last 2 weeks have we had any over 12. TIR varies from ~80% on the best days to ~55% on the more challenging days, but no Lows, Very Lows and only 1% Very High so far, and our first sensor also consistently read a couple of levels high. So I would say she's actually still doing a really fantastic job - just struggling a lot with confidence.

I'm not sure how she'll find the idea of switching back to Levemir. The degludec has worked really well for her for a long time so I'm hoping it's just a rocky patch with it that'll settle once we're a bit closer on the dose. But definitely something she can bring up with the diabetes team when she's a bit more settled. It was changed a long time ago and certainly followed up at the time. Unfortunately she's a bit less keen on her current diabetes team than her original one - but that's how things go, they do seem to vary in quality.

 

[Proud to be erratic]

@Proud to be erratic she was similarly offered a Libre but then changed to a Dexcom because Libre was not compatible with her phone (turned out that the Dexcom was not compatible either funnily enough, but oh well, we changed to a receiver). Completely agree with everything you've said about CGM - we have learnt quickly that it isn't perfect but I'm hoping that she will become a little more used to it with time and it will really start to help her understand her response to food and insulin, and hopefully exercise etc as well later on.

Certain amount of irony there! There are pros and cons to each of Libre and Dex One and those are also different when on a phone app or a Reader (Libre) / Receiver (Dexcom). Presumably the Dex Receiver is still giving real time readings (ie no need for scanning) which would, for me, give Dex One the edge.

I'm still wrestling with the more subtle business of judging the effect of exercise and activity on BG.

I think my sister would definitely agree that she also aims for slightly on the higher side of acceptable. She's eating between 20-40g of carbs per meal at the moment

One minor observation about 20 gm meals. In his book "Think like a Pancreas" by Gary Scheiner he suggests that our bodies need a minimum of 30 gms of carbs to create the appropriate amount of blood glucose that our brains require. If the carb intake is lower than that then our body will metabolise proteins and fats into glucose instead. This is not necessarily a problem, as such; but conversion rates for carbs from proteins and fats are not so straightforward or regular and conversion times can be a lot slower - so judging insulin timing becomes more difficult. If your sister is low carb more often than not, then that might be adding to her present difficulty. Adding an extra 10 gms of carbs (1x Cookie for example) might be worth looking at for a while, if only to see if that removes one of the many confusion factors of managing D.

Just touching on confusion factors is your sister aware of the 42 factors that can affect BG? There's a bit more to D management than counting carbs, taking insulin and getting the timings right! None of us can get everything completely right, but I find knowing what might have upset the potentially great day is a help, overall. It certainly gives me some confidence to have a possible explanation, even if I didn't foresee it or couldn't have anticipated it! I'm attaching a link to this.

42 Factors That Affect Blood Glucose?! A Surprising Update

Adding 20 new factors, a whole new category on behavior and decisions, and research on unexpected things that impact blood sugar and diabetes

diatribe.org

and generally lands on readings between 6 and 10, with some occasionally over 10 but only once in last 2 weeks have we had any over 12. TIR varies from ~80% on the best days to ~55% on the more challenging days, but no Lows, Very Lows and only 1% Very High so far, and our first sensor also consistently read a couple of levels high. So I would say she's actually still doing a really fantastic job - just struggling a lot with confidence.

I would agree those TIR outcomes seem great. I still definitely get rubbish days (too high for too long) but I just "move on" and let tomorrow be another day - regardless of whether I can learn something from a nonsense day.

I'm not sure how she'll find the idea of switching back to Levemir. The degludec has worked really well for her for a long time so I'm hoping it's just a rocky patch with it that'll settle once we're a bit closer on the dose. But definitely something she can bring up with the diabetes team when she's a bit more settled. It was changed a long time ago and certainly followed up at the time.

Great, so its more about hoping she can regain some stability and thus regain confidence in her D management techniques.

Unfortunately she's a bit less keen on her current diabetes team than her original one - but that's how things go, they do seem to vary in quality.

I'm fortunate enough to be very happy with my new D team; I was seriously unhappy with my former regime. Fortunately I will be able to stay with that team after we've moved from one County to another and thus into a different Hospital Trust.

 

[Leadinglights]

Is your sister also having bolus insulin for her meals as you don't seem to have mentioned that?