Type 1: Blood Sugar All Over the Place Really Need Help Adjusting Levels

akaust

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Hello,

I have been diagnosed with T1 diabetes just over 3 years ago and at first was managing my levels OK. Recently I just cant seem to get them under control. I was originally told to take 1 unit of NovoRapid per 10g of carbs and use one unit to lower my sugar levels by 3 mmol I also take 15 units of levimir each morning. At first this worked very well and I didnt even need to test blood sugars that often as they were always where they needed to be when i tested. A year after i was first diagnosed my a1c level was down to 7.1. Last year it was 10.5 and now it is 11.9. I obviously need to adjust my ratios but can not work out how to do this.
Here is what happened for the last 2 days:

Yesterday

10AM - Before breakfast - blood sugar 14.7 - Carbs eaten : 78g - Novorapid Taken: 12 Units - Levemir taken: 15 Units
2pm - Before Lunch - Blood Sugar 14.3(up since breakfast) - Carbs Eaten 90g - Novorapid Taken: 16 Units
6pm: Blood Sugar: 5.7
8pm Blood Sugar: 5.1 - Carbs Eaten - 25g - Novorapid taken -3 units
9:30pm Before Dinner - Blood Sugar 6.0 - Carbs Eaten 80g - Novorapid Taken: 8 Units

Today
9:30AM - Blood Sugar 16.2 - Carbs Eaten 0 - Novorapid Taken: 4.3 Units
11am - 10g carbs (coffee 2 sugars)
14:30 - Before Lunch - Blood Sugar 12.2 - Carbs Eaten 80g - Novorapid Taken: 13 Units
6pm - before driving - blood sugar 12.7 (up since lunch) - Novorapid correction dose 5 Units
8pm - Bloodsugar 4.3 - carbs eaten to raise it 25g

Can anyone help me adjust my doses as i just do not know what to do - i have been taking extra amounts to try and keep it within range but just can not seem to get it right and am feeling very tired and burnt out recently and i just need to get it right.

Any help would be very much appreciated.
 

azure

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Do you not test after meals @akaust ?

I can see you have sugar in your coffee. That's generally really hard to cover with insulin. That might be one thing that you could change.

I also see you wake high. The first thing to do is a basal test to check if your basal is right. The basal is the foundation you build on, so it's best to sort that before altering ratios.
 
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Munim786

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Hi Akaust,

It's quite clear that you are having a roller coaster of blood sugars probably because you are eating large amounts of carbohydrates. As a long standing type 1 diabetic myself these high blood sugars really not need to happen nor do the long term complications. It be wise of you to buy and read Dr Bernstein Diabetes Solution available on Amazon - guiding you about controlling your blood sugars.



This source of information will provide you with much information and guidance on how to control blood sugars and avoid wild swings that many diabetics face unceserraily.
 
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RuthW

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That is only two days' records so it is hard to judge well, but it may not be as bad as you feel right now. Your problem is clearly starting the day with a very high reading. Very high blood sugars complicate things because in themselves they increase insulin resistance and mess up your ratios. But once you get your blood sugar into a reasonable zone, your ratios seem to be working better.

One of the other most noticeable things (to me) is how timing of meals and injections is probably messing you up or at least your interpretation of what's happening. First of all, you took Levemir in the morning on the first day. Do you take it before bed or in the evening too? Or only once a day? If your Levemir has run out well before the morning, that would explain why you start every day on the wrong foot, so to speak. It looks like you should be taking a split dose, evening and morning. If you are in fact taking an evening one, then it looks like it is too low.

Also, you ate very late the first day. That makes it difficult to track whether your ratios are right or not in the evening. But the second day, apparently, you had no dinner at all! There are the coffees with sugar, and there are a couple of times you take two injections with the second one inside the action time of the first - that tends to make it harder to interpret!

Azure is right. I think you need to work out your basal rate first- especially over night. i think everything else will be easier to interpret after that. But when working out ratios, you need to make sure you are leaving four hours between shots of fast-acting insulin, or it is not really possible to interpret results.

My results get crazy when i don't do the boring old 'three meals a day' routine. If i get up late, I might only do two meals a day with a carb free snack at some point. Otherwise, the bouncy-bouncy graph line is sure to happen!

Edited to add: see the thread about longevity for Type 1s. It has some interesting info about the factors that contribute to longevity, and avoiding carbs is not one of them.
 
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akaust

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Thanks for taking the time to reply to me i really appreciate it.

Azure - I will go ahead and change my coffees to one sugar and see if that helps bring things under control a bit more - also how do I get the basal under control?

Munim786 - I will order that book I definatley need more information on how to get this under control-

RuthW - Yes i have been taking 15units of levimir once a day normally before breakfast at around 10 - 11am and have not eaten dinner yet today which is why i did not list it - I had a little read through this forum before I posted and had already decided to split the levimir to 8 units at 10pm and 10am - I should perhaps have breakfast slightly earlier to avoid overlapping the novorapid doses. You also mention getting the basal rate right is there a specfic way to do this or is splitting my levemir dose the way to go about it?

Noblehead - Just seen your reply (must have posted when i was typing my response) This is what i was wandering how to do will have a read of that now



Thanks again for your replies
 

catapillar

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Have been on a DAFNE course? Obviously you know how to carb count, but it does also cover how to analyse your patterns, figure out what changes to make, implement them and analyse the impact - sounds like what you need at the moment. Ask your GP or do a bit of googling to figure out who is responsible for providing "structured diabetes education" in your area and see how you can get on a course - it will help give you confidence to make the changes as and when needed.

There is an online course on carb counting and ratio adjustments, but I would agree that the starting point is your basal. I think levemir only lasts around 12 hours, so if you are only doing a morning dose it might not be covering you all day long.

Testing before bed and 2 hours after eating might also help while you are considering changes.

Just, thinking aloud, 3 years in you could just be now well and truly out of your honeymoon and need to review everything (but in all honesty it's like painting the forth bridge, there will always be something that could do with a review) but basal is the best place to start. Here is some information on basal testing - http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

Do get in touch with you GP or your DSN - if you don't feel confident in making the changes yourself they should be supporting you with them and/or offering the education so that you can feel confident with it.
 
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azure

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The Dr Bernstein book has lots of information in but personally I prefer Think Like A Pancreas. Type 1s here eat varying amounts of carbs. The important thing is to aim to control your blood sugar as much as possible.

I second the comment about your honeymoon being over possibly. You didn't answer my question about testing after meals. Do you? That's important for control and when you're adjusting your ratios later.
 

RuthW

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Thanks for taking the time to reply to me i really appreciate it.

Azure - I will go ahead and change my coffees to one sugar and see if that helps bring things under control a bit more - also how do I get the basal under control?

Munim786 - I will order that book I definatley need more information on how to get this under control-

RuthW - Yes i have been taking 15units of levimir once a day normally before breakfast at around 10 - 11am and have not eaten dinner yet today which is why i did not list it - I had a little read through this forum before I posted and had already decided to split the levimir to 8 units at 10pm and 10am - I should perhaps have breakfast slightly earlier to avoid overlapping the novorapid doses. You also mention getting the basal rate right is there a specfic way to do this or is splitting my levemir dose the way to go about it?

Noblehead - Just seen your reply (must have posted when i was typing my response) This is what i was wandering how to do will have a read of that now



Thanks again for your replies
If you are looking for books, I recommend Think Like a Pancreas. It is very readable and really helped me.
 

akaust

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Hi Azure - the reason i dont really test after meals, or havent been at least is the time between breakfast and lunch is quite close togetger so my before lunch test is like my after breakfast test. I also eat dinner very late usually so am in bed before the bolus dose has taken effect so i dont get round doing an after dinner test.

Catepillar - I have been offerd to go on a windfall course but it is 4 days which i would have to take off work and I would have to take them as unpaid and I really just about live month to month financially so that is why i have not done it. I will start by doing the basal test tomorrow and follow the other advice i have been given here and see how that helps. Am also going to get the second book suggested by Azure and hopefully get back on track.

Thanks again :)
 

catapillar

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... I would third the recommendation for think like a pancreas! :)

& keep posting if you fancy sharing you experience of basal testing etc
 

Daibell

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Hi. Yes, do a Basal test as I suspect you may need to increase the dose? The carbs are a bit on the high side and as sugar is a very empty carb with no real food value I would not take any with a hot drink. Use a sweetener like I do or try to train yourself to have no sugar?
 
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catapillar

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Catepillar - I have been offerd to go on a windfall course but it is 4 days which i would have to take off work and I would have to take them as unpaid

Is that because you are self employed? If not, have you asked your employer about it (if they are the kind of employer who aren't just being wilfully awkward) it might be worth asking - they might be sold the leave as a reasonable adjustment for disability under the equality act. It might be a pretty generous reasonable adjustment, but it could worth considering - you know you relationship with your employer better than me.
 
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azure

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Hi Azure - the reason i dont really test after meals, or havent been at least is the time between breakfast and lunch is quite close togetger so my before lunch test is like my after breakfast test. I also eat dinner very late usually so am in bed before the bolus dose has taken effect so i dont get round doing an after dinner test.

Catepillar - I have been offerd to go on a windfall course but it is 4 days which i would have to take off work and I would have to take them as unpaid and I really just about live month to month financially so that is why i have not done it. I will start by doing the basal test tomorrow and follow the other advice i have been given here and see how that helps. Am also going to get the second book suggested by Azure and hopefully get back on track.

Thanks again :)

I would strongly recommend testing two hours after eating. There seems to be reasonable enough space to do that, looking at your meals above. Apart from the fact your basal looks wrong (waking high) it's difgicult to 'read' what's going on because you don't have the after eating tests there. I hardly ever go without an after meal,test. It shows me everything is on track and allows me to,correct if necessary or eat if too low.

Even if I eat breakfast at, say, 9.30am and have lunch at 1pm, I always test two hours after breakfast. It shows me if my bolus was correct and allows me to keep good control.

Sorry to go on about it, but I do think that's an issue too.
 
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akaust

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Hi all, I have orders the suggested. Book and am going to do a basal test tomorrow morning. I took 8 units of levemir tonight and will take another 8 in the morning for the basal test. I can't believe the amount of people on here who have taken the time to offer me advice I wish I had come here sooner.
Azure - I will definitely start testing after meals and will just have to adjust meal times to make it work it makes sense. Caterpillar- I will post back tomorrow what happened with the basal and my readings for the day with the after meal readings too and see how it makes a difference. Thank you all ever so much for your help with this :)
 
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1. Definitely, definitely need to sort out basal. Ask your consultant for degludec: it IS literally flat cover over like 48 hrs. My experience: levemir is the worst basal insulin, glargine is way better, but degludec is really the way to go.

2. You can re-introduce sugar into coffee later. I know it's very hard emotionally to make that sacrifice: I was resentful as hell that I had to refuse myself something enjoyed freely by millions of others. You will enjoy it again, too. Later, though: after your BG is under better controlled. Meanwhile, use Xylitol: it's literally indistinguishable from sugar in its taste and costs 10 quid per kilo on Amazon.

3. Without well established routine eating habits it is VERY DIFFICULT to bring BG under control - especially on MDI. Skipping meals and wide variation of the amount of carbs you have for the same meal each day (talking about supper here) are really not great ideas.

4. Your insulin to carb ratio can vary hugely through the day. We tend to have highest insulin resistance in the morning and lowest late at night. You need to experiment with it.

5. I might have missed it, but I don't think anyone mentioned the possibility that your high fasting BG in the morning could be due to a rebound hyper after a hypo while you sleep. Can you borrow either CGM or, at least, Libre from your diabetes team for a week or so. The difference it made to my understanding of my BG patterns was HUGE.

6. Sorry to be intrusive, but what IS your occupation? Our job does play a major role in our BG control, not to mention overall well-being.

7. I'm curious why there's such an urgency to get things well controlled? It could lead to easy frustration which would lead to diabetes burnout. It really helped me when i realised that I have my whole bloody life to get to know the diabetes monster. Don't rush it. It will not win us a diabetes - free life.
 

akaust

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Hi,

So I took 12 units of novorapid and 8 units of Levemir (new split dose) before my meal last night at around 10:30 and set an alarm to test at 3:30 am so I could get it right for the basal test i wanted to do this morning. At 3:30 when I tested my sugars were 12.5 so i took 4 units of novorapid to correct it. So I tested again just now before taking my 8 units of levemir and hoping to start the basal test and sugar level is still 11.6 so i can not do the test now. I am at a loss here I am starting to think there is something wrong with my Novorapid - I suspected this last week and opened a new box but it is still the same problem.

Aspie - I am going to talk to my GP about getting degludec instead of levemir. I work as an IT manager / Web Developer and I commute around 3 hours a day total. The reason I want to get things under control so urgently is because I am so tired at the moment. Thanks for recommending Xylitol. I looked at that just now but lots of people complain of stomach pains with that so i ordered sucralose instead (i have had this in sugar free squash and find it tastes quite nice).

So will have to wait til tomorrow to do the basal test now. :(
 

Juicyj

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@akaust Please don't feel too down about your basal test, it happens, it's happened to me a few times, just take a deep breath..

From experience I have found that if I cannot reign my levels in it's been because i've not taken enough basal, your dose looks fairly low so it is highly likely this may be the reason.

Remember with any insulin adjustments to wait 3 days before making further changes and never by more than 10% of your total daily dose at a time.

Have faith - you have spotted a problem, it will be resolved ;)
 

tim2000s

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Akaust, as a fellow type 1 I think the best way you can help youself right now is buy the book!
<<<<<<<<<<<<<
You've mentioned this many times in many places. It's starting to chide a little. Bernstein's way is not the only way of managing glucose levels effectively.

Even with Bernstein's approach, until the OP has got their basal insulin under control, they wouldn't be able to get good results taking that approach, so please lay off the pushing this as the only way to manage your diabetes. It is also an incredibly rigid approach that requires you change your lifestyle accordingly. While it may work for some, it doesn't work for all.

Allow the OP to work through understanding where they are, and then let them make a decision based on seeing all the data.