Type 1 for 18 years and STILL it's a mystery :(

Seriously_Sax1989

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Thank you I'll take a look as I've got an appointment made with my DS at the end of the month and I'm going to fire out the questions obviously but I'm going to suggest maybe changing my fast acting insulin as at the mo I'm using humalog, now I've been using humalog since time began albeit at diagnosis I was taking 2 injections a day of humalog mix 25 (1996) and 2013 I changed to basal/bolus and am now using "humalog" so perhaps I've built up a resistance?? It's a stab in the dark but I can't keep having random results as it's wearing me out!

Also @lizdeluz thanks for the tip I LOVE swimming and earlier this eve I tested and was 10.8 so I went for a swim, tested when I got home and they'd risen to 23.4 thankfully ketones were negative! You say you find that after a few hours your sugars drop? That's possibly because you are doing excersize that involves your arms... I was told by a dietician (yep) that anything involving your arms be it swimming, bowling etc lowers sugars and yet again no one knows why! Xx
 
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tim2000s

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Interesting observation. I've found cycling really lowers my sugars and that's nearly all legs.
 

Seriously_Sax1989

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Yeah it's an odd one that's for sure but anything arm orientated really seems to work for me, may be a day or two after but it works
 

smidge

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Hi Seriously!

This might not apply to you, so feel free to disregard, but I just looked at your profile and see you are on Levemir basal. I have been on Levemir for a couple of years. Before that I was on Insuman Basal. Anyway, my BG just seemed totally random - no pattern, no consistency. Same food one day would spike me, while on another would drop me low. Most of the week I'd wake with my BG in the teens and then suddenly I'd get an overnight hypo. No rhyme or reason. Finally, I realised that the randomness had got a lot worse from the time I transferred to Levemir. My BG had always been bit temperamental, but had become completely unstable. Anyway, since mid December I've gone back onto Insuman for my night time basal and my overnight BG is greatly improved - always in single figures, usually around 5.5. I've dropped a little low a couple of times but I'm still in the process f working out the correct dose. Basically, I'm now using less basal and get much more consistent levels. I still use Levemir as my morning basal at the moment, but I'll see how things go with that. I'm also using less Apidra because I had been using more rapid acting to compensate for the fact that my basal wasn't working properly.

Anyway, I just thought I'd let you know about my experience with Levemir, because it might be that it's your basal rather than bolus that is giving you the randomness. Just something to consider.

Smidge
 

Seriously_Sax1989

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Hi Smidge! Thanks for sharing with me, do you know what you're not the first person to say you've found levemir to be problematic! I was put on it initially as I was doing a lot of sport during the summer months especially, first of all I was taking it once a day, then I was waking up like you in high teens so now I take it am and pm, I'm not waking up AS high but still high enough! Each time I see the docs they seem reluctant to change me so instead increase my units! I'm currently taking 24 in morning and 36 at night which I'm sure you'll agree is way too much!

I think it's definitely something for me to ask about as well as the humalog... Who knows it could be both! :)

Thanks, Laura :)
 
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I blame some of my 'blips' on the diabetes fairy:-:wideyed:

evil-fairy-after-dark-24881687-371-507.jpg


RRB
 

novorapidboi26

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As Wurst asked, why is your target 10 mmol, have you got issues with hypo symptoms..........?

With unexplained blood sugars the first thing I think of is basal.............when did I last check it?

Unless its something obvious, the basal should always be checked in my opinion.......

Is your Levemir dose OK at this time of day......?

with regards Levemir and its suitability, if you enjoy or want to enjoy an active lifestyle then Levemir is suited to this.......also you say you think your doses are too much and that can be true depending on how you look at it, but ultimately whatever you need is whatever you need.....

the more insulin your taking the less predictable it becomes of course and everyone should try and take as little as possible.......one way to get it down is to lose weight, but you say your OK in this department.......

Testing your AM and PM Levemir doses would be a good idea, and also to do it regularly too........

:)
 

smidge

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Hi Smidge! Thanks for sharing with me, do you know what you're not the first person to say you've found levemir to be problematic! I was put on it initially as I was doing a lot of sport during the summer months especially, first of all I was taking it once a day, then I was waking up like you in high teens so now I take it am and pm, I'm not waking up AS high but still high enough! Each time I see the docs they seem reluctant to change me so instead increase my units! I'm currently taking 24 in morning and 36 at night which I'm sure you'll agree is way too much!

I think it's definitely something for me to ask about as well as the humalog... Who knows it could be both! :)

Thanks, Laura :)

Yes, many health care professionals like Levemir as it works very well for many people and doesn't seem to have some of the issues some people report with Lantus, but in spite of a split dose, it didn't work well at all for me. It was simply inconsistent. Just one of those things I guess.

I only take small doses (I'm LADA rather than full Type 1) but my daily basal dose had doubled in the two years I took Levemir and still I was waking with my BG in the teens. I have already dropped my evening basal from 8 units Levemir to 6 of Insuman Basal and I think I need to knock another half unit off. My fastings for the last week have been: 6.3, 5.5, 6.2, 5.9, 6.5, 8.1, 5.8, although I have fallen a little low in the early hours twice, hence I think I need to drop the dose by half unit. I still take 7.5 units Levemir in the morning, but I'll probably review that once I have my evening dose sorted out. So it is worth questioning whether your basal is working for you. I'm not recommending Insuman Basal - it is one of the older NPH insulins with a very pronounced peak, but it does seem to work better for me than Levemir. There are other basals such as Lantus and Tressiba that you could ask about.

I hope you get it sorted out. I can't tell you the relief of finally getting my fasting levels down.

Smidge
 
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phoenix

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Hi Smidge! Thanks for sharing with me, do you know what you're not the first person to say you've found levemir to be problematic! I was put on it initially as I was doing a lot of sport during the summer months especially, first of all I was taking it once a day, then I was waking up like you in high teens so now I take it am and pm, I'm not waking up AS high but still high enough! Each time I see the docs they seem reluctant to change me so instead increase my units! I'm currently taking 24 in morning and 36 at night which I'm sure you'll agree is way too much!

I think it's definitely something for me to ask about as well as the humalog... Who knows it could be both! :)

Thanks, Laura :)

I know you say your diabetes team are reluctant to change you, but if an insulin isn't working then there's no point in persevering.

Ask about the new basal insulin called Tresiba, it came out last year and lasst up to 42 hours, it still injected once a day but it's said to have a flat even profile, @robert72 uses it and says it's a great basal insulin.
 

Seriously_Sax1989

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Type 1
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My target was set by my doctor at 10 as after months of aiming for 6 was proving to be hopeless and I just could not do it, the plan was after some time when I had settled into the basal/bolus regime to reduce my target to 6 again as I am aware that 10 is a little on the high side, but as of yet the plan cannot come into place as my sugar levels are sporadic so something needs adjusting.

My hypo sense is fine, always notice when I'm low so I'm very lucky in that regard.

Also I'm not overweight, I'm 5"7 and weigh 10st.

Like I've said I'm going to question everything at my appointment to try and get a step in the right direction as I don't enjoy having mental blood sugars all the time.
 
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clarbarstar

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Hi Seriously!

This might not apply to you, so feel free to disregard, but I just looked at your profile and see you are on Levemir basal. I have been on Levemir for a couple of years. Before that I was on Insuman Basal. Anyway, my BG just seemed totally random - no pattern, no consistency. Same food one day would spike me, while on another would drop me low. Most of the week I'd wake with my BG in the teens and then suddenly I'd get an overnight hypo. No rhyme or reason. Finally, I realised that the randomness had got a lot worse from the time I transferred to Levemir. My BG had always been bit temperamental, but had become completely unstable. Anyway, since mid December I've gone back onto Insuman for my night time basal and my overnight BG is greatly improved - always in single figures, usually around 5.5. I've dropped a little low a couple of times but I'm still in the process f working out the correct dose. Basically, I'm now using less basal and get much more consistent levels. I still use Levemir as my morning basal at the moment, but I'll see how things go with that. I'm also using less Apidra because I had been using more rapid acting to compensate for the fact that my basal wasn't working properly.

Anyway, I just thought I'd let you know about my experience with Levemir, because it might be that it's your basal rather than bolus that is giving you the randomness. Just something to consider.

Smidge
Oh no, I've been on Levemir the entire time, I wonder if my BG would improve if I changed.
 

Seriously_Sax1989

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Hi everyone bit of a change today, I woke up at 18.4 negative ketones had breakfast took insulin including correction dose and went to work. Checked 3 hours later (9:30am) and was 3.8 so took dextrose tabs (4) tested after 15 mins and was 3.7 so repeated the process and eventually went up to 8.8!

Can anyone confirm, as for me I'm just speculating but does Levemir work best when active? Rather than if you are just pottering about at home for example?

Also I took the advice about swimming slower and it worked! :)
 

Spiker

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I would guess either that was a false high reading, contaminated, or your correction ratio is too high.

Activity of basal insulin shouldn't depend on anything, it shouldn't vary. What time(s) are you taking the Levemir again? But Levemir could never cause a drop like that.
 

Seriously_Sax1989

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No I get why I woke up high, had a hypo before bed last night so pigged out (like you do) so I expected a high.

I'm taking Levemir at 6/7am and 10/11pm, could have been my correction as my carb counting is always spot on for breakfast.

Was just wondering about the Levemir as I have started back at work this week after Christmas so am a bit more active, I thought it might have made the Levemir more responsive or something, another question to add to my list for the docs!
 

clarbarstar

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No I get why I woke up high, had a hypo before bed last night so pigged out (like you do) so I expected a high.

I'm taking Levemir at 6/7am and 10/11pm, could have been my correction as my carb counting is always spot on for breakfast.

Was just wondering about the Levemir as I have started back at work this week after Christmas so am a bit more active, I thought it might have made the Levemir more responsive or something, another question to add to my list for the docs!
Hi seriously Sax, this might be incorrect but thought I'd try and offer some info that may be of use. Not sure if you've done DAFNE but I was told to split my Levemir 12 hours apart due to the action time...? I had a lot of hypos prior to this but haven't since I split the dose that way. I've included an image of the action time of Levemir.
 

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Seriously_Sax1989

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Hmm thanks for that :) that means I'd be taking my last dose around 6/7pm tho but sometimes I may not have had food so would need to administer more fast acting insulin... What do you usually do?
 

Spiker

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You don't need any food for your basal insulin. That's the point of it. If you need food to counter your basal insulin, you need to reduce your basal insulin.
 

clarbarstar

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I was confused by what you meant Seriously but I see the point now. Agreeing with spiker here, I don't take basal at dinner time or bed time or getting up time, just 12 hours apart at 9.30, sometimes that coincides with eating but that doesn't matter.
 
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