Hello and so confused

[Bungle Bungle]

Hi there,

I'm new to this site and to diabetes too. I was diagnosed with Type 1 at the beginning of February after being ill for months. It was a big shock but also a huge relief to know what was wrong and that once I'm stabilised is totally manageable (hopefully!)

I've got my head round the injections, checking BG levels and that this is something I'm going to have to deal with for the rest of my life. However, at the moment I'm finding it really hard and frustrating managing my BG levels as they seem to be all over the place and I can't find a pattern. I'm eating really healthily (I'm yeast and gluten intolerant so naturally eat a healthy and mainly homemade diet), counting carbs, eating meals at regular times but my levels are still not what I expect/want them to be.

I'm on Lantus, 16u in the morning and Apidra, 4u at breakfast, 6u at lunch and 6u at dinner. I haven't learnt how to adjust these depending on what I'm eating so at the moment am having to eat around my insulin as opposed to the other way round which I know is wrong and means I'm eating a lot more carbs than I normally would. I was on 18u, 4u, 7u and 7u but I was having hypos almost every other day and feeling hypo even if I wasn't actually having one. My levels are all generally much higher now but fluctuate a lot. Speaking to my DSN last week I seem to be particularly sensitive to the changes in BG, I'm tired throughout the day, have lots of headaches, my brain disappears on and off and I generally don't feel great. I do an extremely stressful, busy job and am no way near being able to go back as I haven't had a day yet where I've had energy or felt ok all day.

I'm not sure whether my basal dose is right and I can't work out what my ICR is. I'm basing it on 1u to 10g carbs but I'm not sure if this is right.

I eat the same thing for breakfast everyday, (gluten-free porridge oats, soya milk and usually blueberries too) about 40g carbs but my BG levels 2 hours after seem to range although are all generally pretty high.

For example, this morning I was 7 before breakfast and then 12.6 2 hours later.
Yesterday I was 9.3 before breakfast and then 10.2 2 hours later.
The day before I was 7.9 before breakfast and then 14.1 2 hours later.

My routine at this time of the day doesn't really change. It's so frustrating and doesn't make me feel great at all. Does anyone know if this means my Lantus or my Apidra needs changing?

I've read about doing basal tests where you don't eat breakfast and then do the same at dinner. Does this mean I can eat a carb-free meal with no fast-acting insulin or not to eat at all?

Phew, that was a lot longer than I planned...I have a million other questions but this is enough to start with!

Any help would be massively appreciated.

 

[novorapidboi26]

Hello and welcome to the world of diabetes.......

Its perfectly normal to be feeling overwhelmed at the moment, and its also normal to be having problems getting stable sugars.......

As you new to the condition your pancreas may still be giving up the ghost, which makes it difficult to spot patterns and make sensible dose adjustment, but that will come in time.....the quicker the better, this period lasts for different lengths of time in different people.......

So just stick at it, hang around here a lot, and you will be an expert in no time......😉

 

[Northerner]

Hi Bungle Bungle, welcome to the forum 🙂 It sounds as though you are gaining a good understanding of what it all entails, and although your numbers might currently seem a bit unpredictable, I think that with time and experience things will settle down before too long. It's still relatively early days, and what you describe is very similar to the situation I found myself in for the first few months after diagnosis. There's a possibility that, as you are newly-diagnosed, you are in a 'honeymoon' period where your pancreas is still producing sporadic amounts of insulin, which can make things more difficult to get right. As I said, this situation should improve given time, although how long is a very individual thing.

Your general health will also have taken a big knock, and your continuing fluctuating levels will be making you feel as you do. Try to be patient and do the best you can - this should also improve before too long.

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. It explains all you need to know, how to cope with different situations, and what your options are. Plus, of course, you have all the knowledgeable and experienced people here for whatever questions you may have - so ask away! 🙂

Regarding basal testing - have a read of the following:

http://www.diabetessupport.co.uk/boards/showthread.php?t=19060

I look forward to hearing more from you 🙂

 

[bennyg70]

Hi , and sorry to hear your news - But glad you made it here.

It sounds like your coping tremendously with it. Your regime sounds a little rigid but its early days and will all fall into place. In the future it may be worth looking into DAFNE.

If your eating 40g of carbs and injecting 4 - then you certianly are on 1 / 10. A few people require more insulin in the morning, I am one of them. So maybe try 5u, which would be 8/1...

However before doing that. How is your level before lunch? Say 4 hours minimum after youve eaten? If its in range then its more to do with what your eating and injection timing rather than the amount. If you wake at 7, go high on 2 hours and back to 7 at lunch.. Id be happy with that 4 units your on. So Id try a few things. Try 40 g of carbs of a differnt form & try inject 15 / 30 / 45 minutes upfront, too see if you can catch the spike with the peak of your insulin.

Basal testing is really important and you can learn loads off the forum about it. It will help set your basal level right which is the back bone of your diabetes control. However Its still early days, and I think personally you are doing great. Id take more time to let it all setlle and sink in a little maybe? If your keen to crack on, Youll find loads of basal testing info in the pumpers section! Your basal is designed to keep your bg flat all day, so if you ate nothing and injected no fast acting apidra your levels wouldnt fluctuate any more than a couple of mmol/l either way. Most of us on Lantus would be happy with that and call that flat.

http://www.lantus.com/hcp/dosing-titration/dosing-calculator.aspx

This link is the starting dose calculator for lantus. If you thought it may be a bit soon to get your head around basal testing - It might be worth starting here to see if the dose you are on seems to be in the right ballpark. However it is NOT gospel !

Another quick test would be (A very simplified basal test)

Eat dinner 6pm / 7pm with apidra. go to bed 11 / 12 and test, if you are within a couple off mmol/l the next morning the lantus is going to be there or there abouts (However you wont know exactly what its doing through the ngiht).

I hope some of this helps, you will get lots of useful posts from experienced type ones come up over the next few hours with tonnes of useful info..

Welcome to the gang.

 

[everydayupsanddowns]

Hi BB

Welcome to the forum, though sorry you have to be here!

Sounds like you are doing great, and the apporach you are taking will stand you in very good stead over the coming years. As Northie says though, you may have a slihgtly rocky period coming up where your flagging pancreas 'helps out' every so often just to add another variable in to the heady mix.

For example, this morning I was 7 before breakfast and then 12.6 2 hours later.
Yesterday I was 9.3 before breakfast and then 10.2 2 hours later.
The day before I was 7.9 before breakfast and then 14.1 2 hours later.

I'd second what Benny said about looking at your result 4-5 hours after your breakfast jab. Apidra is *likely* to have a reasonably rapid profile (everyone is slightly different) and will probably be out of your system 4hrs after you've injected it. The sort of carbs you are talking about will also *mostly* have finished pushing your BG up by 3-4 hours, so your lunchtime test gives a good indication of the overall accuracy of dose:food. If you find you are regularly 'spiking' into the teens a couple of hours after eating then it is probably more a timing/absorption issue than a dose issue.
[/quote]

Incidentally, meters tend to have more 'wobble' in the results you get to higher levels (since they are allowed by law to be up to 20% out on a lab test, and at higher levels this is a bigger number). Effectively this meals that those 2h results may be more consistent than they appear.

I've read about doing basal tests where you don't eat breakfast and then do the same at dinner. Does this mean I can eat a carb-free meal with no fast-acting insulin or not to eat at all?

Opioion differs. Personally if I'm going to basal test I'd rather it was as accurate as possible (there's enough variation in meter readings already!) so I try to avoid eating anything and drink oly water. Others stock up on sugar free jelly and/or eat a slice of ham or piece of cheese. If you eat relatively low carb though bear in mind that the body is quite capable of converting protein and fat into glucose if there are no 'easy access' carbs available. There's a good writeup about basal insulins and basic basal testing here: http://www.diabetes-support.org.uk/info/?page_id=120

Keep us updated with how you are getting on 🙂

 

[Bungle Bungle]

Hi guys,

Thank you so much!
I was a bit nervous about making my first post but you have all been so lovely and helpful I'm so glad I did it.

It is a bit overwhelming but have time on my hands so am doing all the reading I can so I'm as equipped as possible.
Thank you for all the links I'll have a look at them.

I'll also try your suggestions (one at a time obviously) of replacing breakfast carbs, or trying new ratios and your opinion about not eating at all for the basal tests makes complete sense.

In terms of my readings before lunch, these change everyday.

Today:
8am - 7
11am - 12.6
1pm - 5.7 (which I'm really happy with, am much warmer today so that may help)

Yesterday:
8.30am - 9.3
11.30am - 10.2
1.30pm - 6.1
4pm - 9.1
7.15pm - 8 (had a carb free dinner)
9.30pm - 9
11.30pm - 9.9

The day before:
8.30am - 7.9
11.30am - 14.1
1.30pm - 10.7
4pm - 8.4
7.45pm - 7
11pm - 12.1


I'll keep you updated on how I get on.

 

[bennyg70]

Hi guys,

Thank you so much!
I was a bit nervous about making my first post but you have all been so lovely and helpful I'm so glad I did it.

It is a bit overwhelming but have time on my hands so am doing all the reading I can so I'm as equipped as possible.
Thank you for all the links I'll have a look at them.

I'll also try your suggestions (one at a time obviously) of replacing breakfast carbs, or trying new ratios and your opinion about not eating at all for the basal tests makes complete sense.

In terms of my readings before lunch, these change everyday.

Today:
8am - 7
11am - 12.6
1pm - 5.7 (which I'm really happy with, am much warmer today so that may help)

Yesterday:
8.30am - 9.3
11.30am - 10.2
1.30pm - 6.1
4pm - 9.1
7.15pm - 8 (had a carb free dinner)
9.30pm - 9
11.30pm - 9.9

The day before:
8.30am - 7.9
11.30am - 14.1
1.30pm - 10.7
4pm - 8.4
7.45pm - 7
11pm - 12.1


I'll keep you updated on how I get on.

Id stick to what your doing for the time being based on your results - Let it bed in. I spent 20 years with levels absolutley wildly higher than yours, and im still here just about!! (Im ok really!!) Like the others say your bodys going through a transition period, and your pancrease is probably stuttering its way to non functionable.

Try giving your apidra 15 minutes before you eat tommorow, and see if that helps the 2 hour after test. If not try 30 mins. Be carefull thoguh as if your pancrease kicks in as does your insulin you could go a bit low before you have your food.

Ben

 

[Northerner]

It does look as though you are getting a bit of a spike a couple of hours after your breakfast. I was very similar until I started injecting a bit before I ate, to give the insulin time to get working. For me in the mornings this can be as much as 45 minutes, but if you do want to try this then you need to be very cautious as people can vary so much. Usually nowadays, I try to inject at least 15 minutes before eating. Are the first numbers when you wake up, or when you inject?

Otherwise, your numbers are looking good, and you are building up a good picture of how your levels behave. Things may appear a little random at the moment, but as you learn more you will be able to spot the extra little factors that might be at play, such as how active you have been - even the day before can influence your morning readings! 🙂

 

[trophywench]

Looks to me like either your Lantus is 'running out' a bit in the late evening or your I:C ratio isn't right for dinner.

It's kinda right overnight (take the bedtime reading and your FBG next morning, incidentally that's not sposed to be 'immediately before breakfast', it should be when you wake up!) and the difference should be no more than 2.0 adrift either way. (Well, clinically that's really 1.7 - but 2.0 is near enough)

I should if I were you - get that Ragnar Hanas book Alan mentioned.

And I agree about 'Honeymoon' - it sometimes lasts 12 months !

Honeymoon my foot, they are sposed to be enjoyable I thought? (Although, having been married twice, on reflection - maybe it's right? ie A bit of a PITA - learning to live with somebody else!)

 

[Bungle Bungle]

Thanks so much for all your help yesterday, think I'm getting my head round it all.

The first numbers are when I wake up and I tend to have breakfast about 30mins to an 1hour after that.
However, for some reason (I have no idea why) I was waiting to inject both my Lantus and Apidra just before breakfast. So, this morning I injected my Lantus as soon as I woke up, hopefully the slight peak in this might stop my mid morning highs. If not, I'll experiment tomorrow morning with taking my Apidra at least 15 mins before breakfast. Thought I'd just change one thing at a time for the moment. I'll give it a go for lunch and breakfast today though.
When I do this, should I take BG reading before I inject the Apidra and then again before I eat?

I know my readings aren't too bad for how recently I've been diagnosed but after having BG readings of up to 36 (when I was admitted to hospital with Ketoacidosis) for months before, I think my body is taking a while to adjust to working at these more normal levels and isn't too happy. As you all say, it's early days and I need to get used to it....think I'm just being really impatient. Now I've found out what's wrong I just want to get on top of it and get better!

Ah yes, my DSN did mention something about honeymoon period and that this might explain my erratic readings, fingers crossed this calms down soon.

Thanks for the book recommendation too, have just bought online.

Hope you all have good days.
Rivkah

 

[Northerner]

Sounds like something I could have written 5 years ago, except that you are already a few steps ahead of where I was because this forum didn't exist then! 🙂 It might be of interest to take a reading when waking and then before breakfast - this is what made me realise just how much my levels were rising after getting up and before eating/injecting. I don't bother taking readins now before eating, just the waking one. Personally I can inject my novorapid up to 45 minutes before eating and not drop low - I usually leave it about 30 minutes though, and this certainly reduces the post-meal spikes 🙂

And I really understand about the patience aspect! It can be very frustrating having to wait and build up knowledge and experience when you know the theory already! Good luck, let us know how things go 🙂

 

[Flutterby]

Hi there and welcome.

I think you are doing brilliantly and coping so well so soon after diagnosis. Your results are way better than mine have been at times so don't change anything too quickly. I also get a spike after breakfast so might try Northerners idea of injecting my humalog a short time before I eat. Hmm always learning with this condition!

 

[pgcity]

Great readings so early in your diagnosis. You've made a great start interpreting what is required to manage your numbers well. Try not to get too frustrated with the honeymoon, things get a lot more predictable when your pancreas finally gives up although it may splutter in and out for quite a few months.
It took me a while to feel better at more normal bg levels and I am sure you will soon.
Good luck