# Evening lows



## Lilmssquirrel (Aug 25, 2020)

Hello

Me again (I'm so needy!)

Just over a month in and we are all Libred up which has been a huge relief the past few days.

But I'm still struggling with evening  lows.

On Friday PDSN changed us to 1:12 at teatime (from 1:10) and then 16u Lantus (down from 17 - we were 19 on discharge) which we give around 7.30pm (teatime is 6-6.30pm)

She said we should be between 6 and 9 mmol/L before bed.

We still drop to 4.3-5.1 some time between 8pm and 11pm so I am still having to give a pre bed snack to stop a night time hypo.

I need to speak to her again today but just wondered if anyone had any thoughts/experience on how to proceed.

If we don't give a snack before she goes to bed I'm having to wake her at 11pm to feed her and the poor thing is exhausted. 

She was 6.1 at bed last night but 4.5 at 11pm so I had to force a cereal bar in (6.5 at 11.30pm, 5.1 at 4.55am)

TIA x


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## Toucan (Aug 25, 2020)

Hello @Limsquirrel 
It sounds as if you and your daughter are having a difficult time.
Hopefully @LucyDUK or one of the other parent members will be along soon to give you some advice


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## Kaylz (Aug 25, 2020)

At the moment I'd go along with what the DSN is asking, they are the ones looking at her results 

Unfortunately when newly diagnosed things take a while to work out and even then you still get days where you just don't have a clue whats going on, I still get them almost 4 years in! lol, I also often still require a biscuit at bedtime and as long as your daughter isn't gaining unnecessary weight (and I don't mean any offence with that, thats what my DSN said to me) then I'd just continue with the snack
xx


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## Lilmssquirrel (Aug 25, 2020)

Thanks @Kaylz

It's the weight I'm worried about. DD has always been on 99th for height and weight and lost loads in the two weeks pre diagnosis.

I'd spoken to our gp about her being heavt several times and he was never worried as she is 5ft 2" at 10 so he said she's in proportion.

She'd dropped to the 90th at diagnosis although was weighed on three sets of scales whilst we were in (we switched hospitals the day after admission) so was +/- 2kg across the three. I then had a row with the dietician as she said she was putting on weight too quickly so now I'm paranoid that she'll have a go at me for overfeeding her  but if she keeps going hypo what else am I meant to do?

The PDSN is a bit more relaxed about it but she's eating way more than she did before as she's having 3-4 snacks a day just to stop the hypos. And on Sunday, I gave her a snack at 8pm and by 9pm she was hypo yet I made her take another 1u off her teatime insulin to try to avoid hypo as I felt the bolus advisor was giving a correction when it wasn't needed.

I am sooooo grey after all this!


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## Kaylz (Aug 25, 2020)

@Lilmssquirrel ah right I see

Things will become easier when you are able and confident enough to adjust insulin doses yourself, are you guys carb counting yet? 

It is really difficult being on set units but there isn't really much they can do when first diagnosed, basal (your Lantus) I apologise if you know that but many don't use these terms so just checking, is generally set based on weight when leaving, of course as you are seeing it can and does need altered, this could be due to your daughter still having some spits and spurts of her own insulin known as the honeymoon period, I was discharged and started on 8U of my basal but then I had to drastically reduce that and was on 1U until the end of 2018

You will get there with it but just do as you need to, its important that we try to have as little hypo's as possible and the only current way for you to do that is to feed the insulin, until the doses are right just keep on doing what your doing, your doing an amazing job!
xx


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## Inka (Aug 25, 2020)

I’d be asking about dropping the tea-time ratio further. I’d also be asking if the Lantus was possibly too high. You mention she needs to snack a lot to avoid hypos during the day. That could be her Lantus being too high or her other mealtime ratios being slightly wrong.

Other options are moving the time of the Lantus injection or changing to another basal insulin like Levemir which you give twice daily, meaning you can more easily adjust doses eg have less in the evening if going low over night. The ‘split’ doesn’t have to be even.


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## Lilmssquirrel (Aug 25, 2020)

Thank you both

We are carb counting religiously.  I have been told we can tweak our doses if we want but I have also been told it may take a few days for it to sort itself out so to not tweak too much too soon.  I do think breakfast could do with a tweak as she'll shoot up to around 10 and then drops to 5 within the two hours but before lunch, we have to have a cereal bar.

Will see if I can get through to the PDSN for guidance.


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## Inka (Aug 25, 2020)

Moving the breakfast bolus more in advance might help that because you might then be able to slightly reduce the bolus amount. Moving it more in advance will help keep the spike down without having so ‘much’ insulin that she goes low before lunch.

And yes, giving changes a few days to work is always sensible


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## Deleted member 27171 (Aug 25, 2020)

I wonder if it’s worth discussing the timing of the Lantus with your PDSN? although it’s supposed to keep the basal rate even over 24hrs, people do find that’s not always the case and there could be a delay to onset, maybe giving the Lantus earlier in the day would help? 
Might solve nothing but could be worth asking.


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## Lilmssquirrel (Sep 5, 2020)

LucyDUK said:


> I wonder if it’s worth discussing the timing of the Lantus with your PDSN? although it’s supposed to keep the basal rate even over 24hrs, people do find that’s not always the case and there could be a delay to onset, maybe giving the Lantus earlier in the day would help?
> Might solve nothing but could be worth asking.


Thanks. Spoke to her yesterday and she was adamant lantus timing is fine


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## Lilmssquirrel (Sep 5, 2020)

So we've just started to experience the joys of an overnight hypo 

Thursday night the libre said 3.5 at 10pm so I finger pricked at 10 (6.9) and 10.30pm (6.2). Libre was insisting a hypo but I chose to believe the blood and went to bed.

Getting up yesterday, she'd been hypo all night on the libre and a fingerprick said 4.1.

Saw PDSN yesterday and we talked about my bedtime insurance policy of milk and a hobnob was not appropriate so she changed the ratio from 1:15 to 1:18. I appreciate I need to be patient for a few days before I tweak it more.

We carb counted her tea - she had a friend over so they had pizza and salad followed by Halo and fruit. All carb counted.

Hubby and I had a curry later so she snaffled a poppadom and a half (no insulin, we are MDI). At 9pm she was 5 and trending down so hubby administered milk and a hobnob whilst I was on a dog walk.

I forgot to scan her when I went to bed as I am frankly exhausted and drained through the last two months (bereavement, T1 diagnosis, sh*t of an ex husband) but when I got up at 4am I stupidly decided not to disturb her for a scan (she was lying on it and she's not had a full night of sleep for several months)

When she wasn't awake by 6.30 I got nervous as she's an early riser.

Turns out the libre has her being hypo from 11pm. Finger prick confirmed it.

Now feeling awful for being so blasé about it and wondering what to do for the next few nights as surely being hypo overnight is not a good thing? Should I be checking every few hours?

TIA x


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## grovesy (Sep 5, 2020)

If she was lying on the sensor are sure it was not was known as a compression low? Due to lying on the sensor.


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## Deleted member 27171 (Sep 5, 2020)

Although not impossible, 7.5 hours would be a long time to be hypo without seeing some response from the liver to correct it or even send it high. So it could well be the Libre reading a bit out. 
You could test when you go to bed and maybe once during the night for a couple of days to reassure you, but you shouldn’t need to test every few hours. 
Try not to feel too bad about not testing, I’ve been known to turn off Dexcom alarms like a snooze button when they‘ve gone off at 3am, we’re only human.


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## Inka (Sep 5, 2020)

I wouldn’t necessarily trust the Libre readings either. If you’re concerned, do your normal bedtime test with a finger prick, give a snack, then set an alarm for around 2am to do another finger prick blood test. 

You already have proof that the Libre was reading low and you’ve mentioned the sensor being laid on. So - don’t panic or make yourself feel guilty. It’s likely she was ok during the night and only dropped a little just before she woke.

I’m glad the meal ratio was changed.


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## Thebearcametoo (Sep 5, 2020)

What level was she at when you woke her? There are hypos and then there are hypos...

I wouldn’t trust the Libre as gospel when you’ve had finger pricks at 6 when Libre was showing low a finger prick is always going to be more accurate but even then there is a margin of error. (You can take finger pricks from the same finger within a few seconds and get a different reading.) Each sensor will have its own foibles and they tend to be more accurate in target than when hypo or hyper so it can be a case of knowing this sensor is likely to read low and mentally adjust higher and to take finger pricks to get more accurate readings. An all night hypo is more likely to be a sensor issue than an actual hypo as Lucy says the body would respond one way or another to someone being hypo for that length of time. Libre can be really useful but it can also cause unnecessary anxiety. It is a tool and not god.


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## trophywench (Sep 5, 2020)

The direction of the arrows is of more use than the actual numbers produced by it, is what I'm thinking at the moment @Lilmssquirrel as I'm a very new Libre user, though a pretty ancient T1.

I'm as satisfied as I can currently be (not having compared it to a lab test result for over a year) with my BG meter results so my Libre 3.3 last night was actually 5.2, though I deliberately didn't bolus for the satsuma I was about to devour and waited till bedtime to have a correction dose.

I haven't fathomed out yet what the difference between my blood and Libre readings is - deliberately leaving comparisons out of it at this early stage.

@Thebearcametoo - is my first thought reasonable d'you think?


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## Thebearcametoo (Sep 5, 2020)

It’s a while since we used a Libre but we found them very variable (reasonably accurate in target but getting more and more inaccurate as it went out of target) and it made a difference knowing what each reading meant for each sensor as some were more accurate than others (a bit like knowing which friends are terminally late vs very prompt and you adjust your expectations accordingly). I think as @trophywench says the directions of the arrows is the most helpful thing so a Libre reading of 3.5 but stable (if backed up with a finger prick above 4) would have me worrying less than a reading of 4.5 with a fast downward trend. The trend combined with a finger prick really helps in knowing if a hypo is a gentle one that will come up fairly easily or if it’s a crashing hypo that would benefit from aggressive treatment so you’re not stuck for an hour or more getting back up. Hydration levels can make a big difference with them was our experience too. I wouldn’t trust a Libre reading of a hypo without a back up finger prick. Some people find them more accurate though. It’s about learning what it means for you.
(We gave up with them in part because it was causing more anxiety than helping.)


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## Lilmssquirrel (Sep 6, 2020)

Thanks all.

She was hypo again on waking this morning. 2.8 on libre, 3.3 on the blood prick. She was 5.2 when I went to bed. I didn't check overnight as I was so dang tired I didn't wake up at 3am for the first time in weeks so will set an alarm

@Thebearcametoo I hear what you're saying about the anxiety it causes. She was more willing to do intermediate finger prick yesterday in response to libre reading low (she was low 4s several times) rather than the check being in response to hypo signs. In fact there were times she said she was wobbly and was up around 7.

Im going to take out 1u of lantus tonight. She has both netball and hockey tomorrow so I presume they will keep her lower.

@trophywench thanks for the arrow affirmation. I'm trying to only get her to finger prick if she's in the fives with a down arrow.

Such fun


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## Pumper_Sue (Sep 6, 2020)

It sounds to me as if your daughter is having far to much Lantus.


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## everydayupsanddowns (Sep 6, 2020)

Hypos overnight are often a sign that my basal needs reducing. 

Hope you can find a set of ratios and doses that reduce the need to ‘feed the insulin’ so much, and reduce the need to wake her up. As the long autumn term progresses she‘s gonna value all the sleep she can get!


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## everydayupsanddowns (Sep 6, 2020)

Lilmssquirrel said:


> I'm trying to only get her to finger prick if she's in the fives with a down arrow.



A very good consultant (and worldwide hypo specialist) once mentioned to me the importance of remembering context with CGM readings, especially the lag where hypo dodging is concerned.

_5 and a down arrow_, means that 5-10 minutes *ago* you were 5 and heading down. And any hypo treatment will take 10-15 minutes to kick in, so if you want to dodge the low you need to be remembering that 20-25 minute ‘gap’


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## Thebearcametoo (Sep 6, 2020)

The Libre will help to give you data which can help you as to whether it’s the basal that is too high or the evening meal bolus ratio of a combination of both. Lantus will take a couple of days to stabilise so you won’t see the results of a dose change immediately and if she’s exercising today that can affect results for 24 hours or more too. I would be sending her to bed at around 6-7 on a finger prick for tonight and see how all the changes manifest in a few days. Once you’re confident of her overnight levels you can be a bit tighter on bedtime levels.


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## trophywench (Sep 6, 2020)

Yep - agree entirely with far too much Lantus circulating, it's a right PITA even for a stable adult trying to get Lantus dosing adjusted with having to wait 3 days to see if any adjustment really worked or not.

Although it means an extra jab a day lots of us have found Levemir shedloads more 'biddable' cos with Lev (once Lantus is fully eliminated from the body, so not for the first 3 days after changing) usually you can tell within 12 hours whether the change (up or down) is effective.

Dunno whether it's advised for children though; not an expert in NICE paediatric guidelines.


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## Inka (Sep 6, 2020)

I agree about the Lantus. Levemir is better IMO for most people. As far as I know @trophywench its approved for children.


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## rebrascora (Sep 6, 2020)

I'm another big fan of split dose Levemir. For me, I need more than double during the day compared to at night. My current dose is 16 units in the morning and just 3.5 at night and if I have had a very active day, I drop 1-2 units from that night time dose and if I am less active the next day, I add it back on the next night to keep things level and the change is effective during that 12 hour period, so I can chop and change from day to day as required.. 

I also find my Libre sensors consistently read about 1mmol lower than my finger prick when my levels are low, so 3.5 will actually be about 4.5 or maybe even higher and 2.5 on the Libre will be about 3.6. I don't get too concerned about these  low readings although obviously take action to prevent them happening regularly. In range readings are usually pretty close and I haven't had too many high readings that I have double checked since starting using Libre, so I am not sure how they compare. I tend to know when I am too high and needing a correction.

You sound like you are at your wits end and worn to a frazzle trying to do the right thing but worried all the time that you are not getting it right. I know it is frightening in the beginning as an adult patient and it must be 10x worse as a parent of a child, but you really are doing incredibly well and these early months are by far the most difficult both in terms of not having enough knowledge and experience, worry itself and then the pancreas unhelpfully throwing out some insulin when you least expect it just to put a big spanner in the works of all your carefully calculated doses. 
Hang in there, it really will get easier.


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## stephknits (Sep 6, 2020)

They changed Alice from Levemir to tresiba because this is what they recommend for young people as it is much more forgiving if you don't do the jab at the same time.


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## Deleted member 27171 (Sep 7, 2020)

Inka said:


> I agree about the Lantus. Levemir is better IMO for most people. As far as I know @trophywench its approved for children.



Yes is definitely ok for children. My son switched from 1 Lantus to 2 Levemir when he was about 6 I think, he used to find the Lantus injections would sting but Levemir didn’t.


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## Lilmssquirrel (Sep 7, 2020)

Thanks everyone.  We made it through last night without incident.  I gave her crumble (wholemeal flour, oats, sweetener - no joy at all!) after tea and played a bit fast and loose with the carbs.  Glass of milk on top and we made it through the night at a steady 5.3-5.6.

I did forget to drop the Lantus last night but we have both netball and hockey today so was told to dial it down by 2u anyway.  Let's seewhat tomorrow brings!


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