Does it get better? Tell me your experience

[LucyM88]

Was going to post this in the type 1 forum but for some reason it says I don't have permission....anywhooo....

I was on mixed insulin, HumulinM3 for quite a while. Decided to give DAFNE a go and was told I needed to change my insulin. I'm on Humalog during the day and Levemir at night.

Counting carbs and doing a LOT of corrections and such. Was told it would take a while adjust. But at week 3, i feel like I'm loosing the will to live. I feel totally out of control and at 27, I hoped that things would be settled enough to consider babies in a couple of years. Now it feels like it will never happen because my sugars are so bad and my HB1AC will be awful when I go to clinic in June.

Of course I know I'm panicking and being over dramatic but this is how it's making me feel.

Please tell me your experiences, it might put me at ease. I've included my blood sugars from last week to show you. It's awful I know

 

[azure]

Hi @LucyM88 I've moved this to Type 1 for you

My advice is to try to sort one thing at a time. So, first, check your basal insulin is ok, then once you've got that good, move on to sorting your meals.

I know you say your records depress you but you're doing absolutely the right thing keeping notes - that will help you work out what works.

It's hard moving to a different insulin regime, and it's still early days for you. I'm sure you'll gradually get on top of it

 

[LucyM88]

Thanks so much for that.

Yeah I've increased my morning Levemir twice and now my breakfast ratio has increased by half as per DAFNE rules.

 

[Engineer88]

I can see a pattern there @LucyM88 Have you thought about using excel or Mysugr to track these?

another thing - can you try and do a before bed test? that would give you a drop rate over night. also to your eyes open at 10am? I think you might have dawn phenomenon whoich would mean you need more insulin (a QA shot even with no food ) at breakfast time.

 

[Kristin251]

Can I assume you are not eating low carb? I could never get steady or low numbers with carbs

 

[paulliljeros]

Hi @LucyM88 , As @azure has stated above, getting the basal correct is a fundamental 1st step. Can I suggest you consider buying Think Like a Pancreas or Sugar Surfing. Also if it is at all possible, consider CGM of some sort Dexcom or Libre. For most people they are seen as too expensive, but the insight they give you is invaluable and will help you immensely, especially in the early days while you are trying to get to grips with the BG numbers. You will jump from seeing a snapshot of 4 numbers each day, to seeing 288, automatically displayed as a graph, that will demonstrate exactly how each factor (insulin, carbs, protein, exercise, stress etc) are affecting you and help you to react to them.

 

[LucyM88]

Can I assume you are not eating low carb? I could never get steady or low numbers with carbs

My diet is very 'normal', some days are high carbs or med. very rarely low carbs for me.

 

[LucyM88]

I can see a pattern there @LucyM88 Have you thought about using excel or Mysugr to track these?

another thing - can you try and do a before bed test? that would give you a drop rate over night. also to your eyes open at 10am? I think you might have dawn phenomenon whoich would mean you need more insulin (a QA shot even with no food ) at breakfast time.

I do test before bed quite frequently. Very rarely go to bed without a test.

 

[slip]

As Azure said, make sure your basal is correct first - speak to your DSN about checking this.

What sort of things are you eating? Pasta, fatty foods and curries can have an affect on your BS 5hrs+ after eating. As for the chicken salad having no carbs - your BS probably rose due to the protein - some people on ultra-low carb diets have to bolus for protein (most count it as carb and bolus for half of it - but everyones different)

Your best day was Wednesday 20th - did you do anything different that day?

Pick a day you know exactly what you had and list times, bs result, what you ate and how many carbs you think it was (if you can supply your working out for this we can sanity check it), your ratios and units injected, and ideally BS result 2hrs after if you have them, any exercise too.

I'm sure we can help you out, and once you get settled and a handle on it it becomes second nature - it will get easier!

 

[LucySW]

My diet is very 'normal', some days are high carbs or med. very rarely low carbs for me.

Ah. Well, low carb produces consistency, so you get rid if the wild swings. Some people don't care for it, but it takes the unpredictability away. I couldn't live without it.

Two things:

1) Really I'd start using a phone app, so you can see patterns at a glance and get analyses very easily. I use MySugr. DiaConnect is also very good, tho harder to put notes in. I write the food I eat and my carbs into MySugr.

2) As someone, azure?, suggested, if after graphing your numbers there's a pattern of waking up high every morning, then that will be Dawn Phenomenon. Some people just take a correction dose of QA when they wake up, without food. I have to take 1 or 1.5 u every morning. Then I bolus for breakfast later. Otherwise I go up and stay up all **** day.

Courage - much of this is seeing thru the numbers.

 

[LucyM88]

Thanks so much for all your replies so far.

I'm just trying to do it and fit it in as simply as I can due to my work and lifestyle. I don't want to keep putting in numbers everywhere and having loads of apps, that's why I just use my book at the moment.

 

[paulliljeros]

I'm just trying to do it and fit it in as simply as I can due to my work and lifestyle. I don't want to keep putting in numbers everywhere and having loads of apps, that's why I just use my book at the moment.

So in answer to your initial question: It definitely gets easier, and doesn't take a huge amount of effort to get there.
But I think you need to ensure your basal is right. Then you can ensure your bolus and carb counting is correct, and from there you can work out/confirm your correction and carb factors are right. Unfortunately, it takes a fair amount of effort in the very short term, and that includes LOTS of blood tests and analysis. The more you do, the quicker you will get to the answers. But once there, I promise it is well worth it, and the on going control is so much easier!

 

[Mrsass]

Hiya Lucy, you mention increasing your basal but have you actually basal tested like the others have said? I know I'm repeating what's being said but that will be the first major step in seeing a difference in bg results if you get your basal right, then you can look at carb ratios etc,

As slip said weds 20th was the best day, was there anything at all different that day that would have affected bg differently?

Well done on what you've done so far, you are keen to get this sorted so there is no reason why you can't have great control soon, we all panic and get a bit over dramatic sometimes X

 

[ewelina]

As everyone above said, get your basal right for the start. I noticed that you don't bolus for no carb meals. Your readings clearly shows you should start doing so. I know that dafne doesn't promote it, but most low carbers need to bolus for protein

 

[azure]

Thanks so much for all your replies so far.

I'm just trying to do it and fit it in as simply as I can due to my work and lifestyle. I don't want to keep putting in numbers everywhere and having loads of apps, that's why I just use my book at the moment.

And there's absolutely nothing wrong with that I prefer writing things down too.

I think when you look at whole days like that, all the 'wrong' things jump out at you, and it's overwhelming and hard to know where to start.

Another thing I found helped, was to eat exactly the same meals for a few days so I could at least remove one variable. It's boring and I'd only do one meal at a time, but it did help and was less stressful.

Your diet of moderate carbs is fine. Many people eat moderate carbs (or more). The trick is balancing them. You may find having your bolus insulin slightly earlier stops any spikes. To give you an example of this - injecting at the right time before my breakfast of cereal means a two hour BS of 5-7, but injecting too close to the meal means I can reach 11.

It's a matter of perfecting and fine tuning as much as you can. Those BS figures are really not too bad considering its early days for you, so congratulate yourself on making a good start. I'm sure it'll get easier as you tweak and learn how your body reacts

 

[catapillar]

Totally appreciate that you might just prefer to use the book. But I just wanted to sing the praises of the DAFNE app - if you've done the course you should be able to access the app and, for me anyway, it was the best thing I got out of the course! I have given up using pen and paper because the DAFNE app has a place to record your carbs, your basal, you bolus, it changes your results to red (high) green (in target) and blue (low) so it makes it easier to spot patterns, every day it tells you yesterday's total carbs and total insulin dose and it keeps a running track of your 7, 14, 30 and 90 day average. and your DSN should be able to access your DAFNE app inputs too, which could be useful. I shall stop the sales pitch now... sorry

I'll try and say something actually helpful now, which is, I'm confident it will get easier. You have to give yourself more credit, changing your basal is a big change and it might need a bit of work to settle into. If you can, I would agree a basal test might help you (although I confess I've never done a proper basal test because my insulin requirements change too much during my menstural cycle for me to see it as a worthwhile exercise) or titrate your basal following the stepwise rules. Once you feel confident with your basal you can focus on getting your ratios right - they might need to be different at different times of day, there might be a bit of trial and error to it, and eating the same meals for a couple of days can help with that. And then you could consider looking at non-DAFNE stuff like pre bolusing (injecting 10, 20, 30 minutes before your meal to see if that knocks off a post meal spike), bolusing for stuff DAFNE doesn't believe is a carb and looking at how to tackle dawn phenomenon.

I think maybe the reason I'm confident it'll get easier is because every day is different and everyday is a process and there's no such thing as perfect numbers it's just a day where you have made it fit in with your life and what you want to do and what you want to eat and how you want to record it and you learn from it and figure out how to make it squish in even better tomorrow. Well, I hope that's vaguely helpful, or failing that at least optimistic.

 

[Daibell]

Hi. As others have said there is a hint that the Basal is too low? It is important even when on Basal/Bolus to keep some control on the carbs otherwise you will have large blood sugar swings. Sadly DAFNE sometimes says you can eat what you want; well you can't if you want to avoid weight gain and swings. So try to smooth the carbs you do have and keep the daily total a bit lower?

 

[LucySW]

most low carbers need to bolus for protein

Indeed they do. I have to bolus for scrambled eggs for breakfast, 1.5 u. Pistachio nuts, 1u. 75g cheese, 1 u.

 

[toscamo]

I started using insulin (premixed, twice a day)) in November - I was expecting it to be a miracle drug, instantly sorting out my high blood sugars but no, it can take several months to get the levels right and a routine of eating the 'right' foods established. Keep in touch with your GP/nurse, you don't have to wait until your next check-up is due. You're only 3 weeks, in, you'll get there!

 

[LucyM88]

Just a little update....

Had such good numbers today. For me anyway. Woop to me! Lol.