At the end of my tether

[Senga]

Hi Everyone,
Thank you for taking the time to read. Not really sure where to start so apologize if my post is confusing. I have been diabetic for about 10years control was never fantastic I was too busy dealing with others problems. After having urine infection and depression I lost control of readings and sought help from diabetic nurses, they have discussed with me details over phone as I cannot get appointment till end of the month. I would have preferred to see someone in person as info over phone is too quick and I am not getting chance to ask questions. I am trying really hard but getting nowhere I test constantly and keep notes of activity food etc to get this under control.

I used to take 9 Levemir at 9 in the morning and 19 at 9 oclock at night was told was told must be taken at same time morning and night half an hour allowed either way.

I now have been told to take 12 Levemir before I step out of bed and take 15Levemir before 12 (which means I must be in bed by 12)
Been trying this for 11 days now it started of as 13Levemir in morning and 19 before midnight but I have gradually cut it back as sugar too low.

I used to take 7 Novarapid at 9am with breakfast 7Novarapid with lunch and 9 at dinner time
Because of the increase in Levemir I was told to cut this back to 6 6 and 8
I have cut morning one back to 4 as I have one Weetabix and tea no sugar just semi skimmed milk I felt the 6 dropped levels too much
I have cut lunch back to 4 or 5 still trying to get this one right I have been sticking to 2 small hovis granary bed and medium banana tea
My last meal of the day is between 5 and 6 oclock.

Around 9 my levels seem to go higher and higher no matter if I am working about or relaxing.eg. 14.9 at 5.20 had 4 chicken dippers chips and beans 8Novarapid at 8 oclock it dropped to 12.7 I relaxed till 9.25 and it went up to 15.4. So I hovered and mopped till 10.35 and it went up to 17.9. At 11.40 I took my 15 Levemir levels were then at 20.7
This morning my readings were 10.2 at 8 oclock.

I feel the levemir is running out around 9 and taking it later than I did (before midnight) It is dropping my sugars far too much on average it has dropped my levels by 8. I always thought the Levemir was to keep levels steady it seems a big drop too me and as such I have been waking every few hours to test
I hope someone can set me on the right path as I feel alone trying to cope. When calling the diabetic nurse it is as quick as she can get me off the phone leaving so many questions unanswered

 

[LucySW]

Hi Senga, I don't know anything about this but others like @noblehead do, they'll be along to help soon I'm sure.

It sounds as if you need to check both your nighttime and daytime basal rates. You would do that by checking one at a time, independently. Noblehead will give you some good leads.

Sounds as if they're both quite a way out of whack. Dropping 8 mmol overnight is far too much: the change shd be a max of 1.5 as far as I know.

You'll be able to do basal testing. Don't worry. Some basal tests will give you information your DN does not have.

It also sounds though as if Levemir isn't suiting you. They need to take you seriously, then discuss whether another basal insulin might suit you better.

Good luck, and I'm sure you'll sort it out.

 

[Senga]

Thank you for taking the time to read my problems, my levels ere never fantastic but at least I could get a sleep without having to wake up every few hours to test. I am exhausted which makes it even more difficult to understand what is going on. I used to inject 9 levemir at 9 in morning and 19levemir at 9pm in evening which worked better for me than this.
My readings for today were bed time reading 11.40 pm 20.2 This morning 8.02 reading 10.2 took 12 levemir on waking.
11.6 at 9.04 I took 4novarapid had 1 Weetabix tea with semi skimmed milk
4.8 at 12.06
5.2 at 12.40
5.7 at 1.05 had 2 small hovis granary bread medium banana 4 novarapid
7.6 at 2.10 housework
8.6 at 2.53 "
11.3 at 3.54 "
11.4 at 5.15 Cheese potatoes cold meat and mixed veg 7 novarapid
Slept till 7.30
9.1 at 7.30

Regards Senga

 

[LucySW]

@noblehead? Basal testing advice and encouragement needed?

 

[noblehead]

Lucy is right that you need to do some basal checks to see if your injecting the correct amount, once you get that sorted you can then look at your insulin-to-carb ratio's.

The following is an explanation on how to do basal testing, its for pump users but the information on fasting and testing in different time frames is still relevant for those who are on MDI:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

 

[Senga]

Lucy is right that you need to do some basal checks to see if your injecting the correct amount, once you get that sorted you can then look at your insulin-to-carb ratio's.

The following is an explanation on how to do basal testing, its for pump users but the information on fasting and testing in different time frames is still relevant for those who are on MDI:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

Thank you so much for your advise I will miss breakfast tomorrow morning. I would have started today with lunch but I have drank coffee since having breakfast and notice it says only drink water through testing. Last night I was so worried hadn't a clue much levemir to take as I know it is dropping levels too much a minute to 12 I decided to take 12 units 3 less than normal as levels were the lowest they have been before bed 11.5 I ate a lindor sweet terrified of hypo through night.
12.30 level was 12.7
3.03 level was 10.6
5.00 level was 9.8
8.00 level was 6.9 12 levemir taken coffee semi skimmed milk (will try to do without tomorrow morning but need something to keep me awake)
9.00 level was 9.3 1 Weetabix tea 4 novarapid
11.00 level was 8.6 I have been active.

I am grateful that at last I have people that will help and encourage me. I no longer feel on my own Cheers

 

[LucySW]

Uncertainty and loneliness are terrible things. But there are lots of people on here in the same boat as you, and generally, if you stop worrying about the whole thing all at once, and tackle each phase of basal testing one by one, you will find some answers.

And if you follow those, your levels will improve, an awful lot.

Knowledge is power and all that. It really is. Just take it one step at a time.

Others will join I'm sure.

PS You've already taken begun to take control by caring about those awful numbers. They do matter, and you're right to care. Well done you.

@Robinredbreast ?

 

[Senga]

Uncertainty and loneliness are terrible things. But there are lots of people on here in the same boat as you, and generally, if you stop worrying about the whole thing all at once, and tackle each phase of basal testing one by one, you will find some answers.

And if you follow those, your levels will improve, an awful lot.

Knowledge is power and all that. It really is. Just take it one step at a time.

Others will join I'm sure.

PS You've already taken begun to take control by caring about those awful numbers. They do matter, and you're right to care. Well done you.

@Robinredbreast ?

 

[Senga]

Thank you for your words of wisdom, I think one of the reasons I took it so bad was I am the one usually helping others. My family and hubby are used to me being the strong one. I am the first in my family to have diabetes so not easy for them to understand. Took me a while to get up the courage to phone the diabetic nurses and ask for help. I have asked to be put on the course and also asked if any cancellations could they bring my appointment forward. I attended before the nurses were brilliant but at the moment the nurse I am getting hardly lets me get a word in edgeways and I am left with unanswered questions e.g. I was just told to take night time at insulin before 12 at bedtime sounds silly but I did not know if I had then to go to sleep, or could I lie and watch tv or play my laptop. I phoned one morning seeking help with levels I stressed how important it was to receptionist that a nurse call me. I had to call four times once I was told she tried calling me back and the next 3 times she had a patient with her or she was on the phone 4oclock that day before I got an answer. Which was too late as I had to guess myself how much insulin to take.

 

[LucySW]

But after you've done basal tests, you will have information you both have to take into account. Better information.

 

[Heathenlass]

Hi there

It sounds as if you really do need that face to face meeting with your DSN to try and personalise your insulin regime and get it working for you. It's a shame that you have to wait, but there's a few educational links that may help you get your head around this a little after trying to get your basal rates correct . There is also some information about basal insulins, their action and timing in the first link .

http://www.mydiabetesmyway.scot.nhs...ection=insulin&thetitle=AIDA&thetype=download

http://www.bdec-e-learning.com

And well done you for trying to get this under control. Motivation is the most important part

Signy

 

[Senga]

Hi there

It sounds as if you really do need that face to face meeting with your DSN to try and personalise your insulin regime and get it working for you. It's a shame that you have to wait, but there's a few educational links that may help you get your head around this a little after trying to get your basal rates correct . There is also some information about basal insulins, their action and timing in the first link .

http://www.mydiabetesmyway.scot.nhs...ection=insulin&thetitle=AIDA&thetype=download

http://www.bdec-e-learning.com

And well done you for trying to get this under control. Motivation is the most important part

Signy

Thank you for the info. I will check these out just now.
Cheers

 

[Heathenlass]

You are most welcome

Signy

 

[Daibell]

I feel you are not getting the best advice from your DN on insulin use. AS others have said, you need to get the Basal right. In my personal opinion although Levemir doesn't last 24 hours, I feel taking it only once day at night has several advantages and is what my DN advised (she used to work in the hospital diabetes clinic so had a lot of experience). Quite a few would disgaree, but it saves one injection and you can adjust Bolus ratio during the day as needed. Having only one Basal a day makes it easier to make adjustments. Do discuss with DN but I suspect she will stick with 2 per day. It sounds like you aren't carb-counting as you mention specific Bolus shots? My DN taught me carb-counting in 10 minutes and is essential if you want to get the tightest control. Finally many would say that the DNs advice about timings being so critical is a bit OTT. Yes, try to be fairly consistent but if you think about it moving it either way by, say, an hour isn't theoretically going to make much difference. All of this is your choice, but be prepared to question your DN when needed.

 

[Senga]

I feel you are not getting the best advice from your DN on insulin use. AS others have said, you need to get the Basal right. In my personal opinion although Levemir doesn't last 24 hours, I feel taking it only once day at night has several advantages and is what my DN advised (she used to work in the hospital diabetes clinic so had a lot of experience). Quite a few would disgaree, but it saves one injection and you can adjust Bolus ratio during the day as needed. Having only one Basal a day makes it easier to make adjustments. Do discuss with DN but I suspect she will stick with 2 per day. It sounds like you aren't carb-counting as you mention specific Bolus shots? My DN taught me carb-counting in 10 minutes and is essential if you want to get the tightest control. Finally many would say that the DNs advice about timings being so critical is a bit OTT. Yes, try to be fairly consistent but if you think about it moving it either way by, say, an hour isn't theoretically going to make much difference. All of this is your choice, but be prepared to question your DN when needed.

Hi,
I phoned today and got a different nurse she was really good, she took her time to go through everything with me said they will get a better picture once I have my appointment and they can see all the notes I have taken. She agreed the insulin must be running out as it rises each night around 9. I have to try taking my levemir at 9 oclock in the morning not as soon as I wake up for a few days to see if it makes a difference.
She also agreed the dosage of levemir at midnight was too high t I was told to take 19 but have cut it back myself to 13. She advised me to cut it back to 10.
I have asked to go on the Daphne course to learn about carb counting. One of the nurses did a little of bit of it with me some time ago I still have the book and try counting and weighing the food but feel I need to go on the course to get it right.
Betweem the feed back of this group and the nurse I spoke to today I feel as though I am finally getting somewhere.
Thank you

 

[Heathenlass]

That's a good start !

I hope the change in dose and timing of the Levemir makes a positive difference for you . I have to say that the previous advice sounded a bit odd to me ! Let us know how you get on ?

Signy

 

[himtoo]

Hi Senga
just want to add my support -- lots of great info to read has been posted and you definitely have the motivation.
it is a marathon -- not a sprint race so do remember to take things 1 day at a time and don't worry about an odd reading that doesn't fit.
happy for you feeling better about things

 

[bellabella]

Is there any way you could adjust the timing of your levemir to 6/7am and 5/6pm?
Then the pm dose can kick in in the evening time when your levels seem to be highest and it might prevent that severe drop overnight. Not exactly twelve hours apart I know but it sounds like you need basal in your system more in the late evening time and the morning time you seem to be more sensitive to insulin

 

[rosscortb]

Hello,

All diabetics worry about lows but most of it is all in their heads, When, you have done the testing and made the adjustments. the thing to remember is that if you have the basel rate correct and carb ratio correct there is no reason for your levels to drop. For example, if you wake with a level of 5 and don't take breakfast, if the basel rate is correct then when you test at noon, the level should still be 5 as you have not eating anything for it to go or taking any bolus for it to go down. If it has dropped to 4 that's still ok, it it has dropped close to 3.6 then you need a little less basal. Same, applies through out the day.
P.s during testing you can have a cup of coffee and milk if you want the amount of milk you use is insignificant

Ross

 

[Vanster07]

ah Ross your forgetting illness or unforeseen exercise which can be dealt with but only if your levels are good or right in the first place
The one that is difficult is the dawn phenomenon if its not a regular occurrence, or what happens to me. My blood levels remain good and controlled for 2 or 3 weeks then suddenly without warning my levels jump up for 2 days or so until i get them under control. Fine again for 2 or 3 weeks and so on.

I've just started on a pump so lets see if it cures it