Help.. off the rails

[StephersJones]

Hi I have been diabetic now for 4 years. Have had no real help from consultants or diabetic nurses, one tells you one thing and the other something different again. Still don't know how to carb count for insulin. So guestimating every meal. Numbers ranging from 16-22 on a bad day. Constantly feel awful. Any advice would be appreciated

 

[EllieM]

Can you reach out to your diabetic team?

Everyone speaks well of the DAFNE course, but there is a fair waiting list. Ask your team to put you down for it.

In the meantime, BERTIE online may help you

https://www.bertieonline.org.uk/

I assume you're on a basal/bolus regime? The basal is meant to carry you through when you're not eating, so if you fast for eight hours (eg overnight) your blood sugar is the same before and after the fast. (That's also assuming there's no bolus insulin or food in your system at the beginning of the fast.) Once your basal is right then you can mess around with the fast acting insulin (bolus) to cope with your day time meals.

Your team should tell you how to calculate correction doses for insulin (eg for me 1 unit of insulin brings me down 2mmol/L but that number varies from person to person), and doses for carbohydrate (eg 1 unit of insulin for 10g of carbohydrate but again that figure varies widely from person to person).
Once you know your correction dose and carb ratio when you test your sugar before a meal you can add your correction dose (if your blood sugar is too high) and your meal amount (based on your ratio and the carb amount in the meal).

Once you know how to calculate correction doses you can at least pull your blood sugars down to normal if you find them too high.

I'm T1 so hopefully someone will correct if I've gotanuthing wrong for a T1.5.

Good luck.

ps my clinic was able to calculate my ratios pretty easily when I came in with a food and insulin and blood sugar diary.

pps am assuming you're in the UK. If you're not then ignore the DAFNE reference but you should still be able to do BERTIE.

 

[Juicyj]

Hi @StephersJones

I appreciate you wrote this late last night and it was after a day of struggling and things getting too much. Well your in the right place for support here. I second Ellie's advice about Bertie, it's a good starting point. Also get yourself a copy of carb and cals which you can download as an app on your phone, if your not doing it already then please make a diary of your results and your insulin doses too. Ideally you need to record some results and speak to your team to check your ratios and doses, unfortunately we cannot advice about doses here, your team will help with that.

You should also speak to your team about doing DAFNE too, Dose Adjustment for Normal Eating which is a very useful course for insulin dependent diabetics covering many areas.

It will take some work and effort to put things right but stick with it you will get there.

 

[WuTwo]

There are useful books available for T1/T1.5s too - Think Like a Pancreas and also Using Insulin. Both available on Amazon as kindle or paper books.

 

[StephersJones]

Thank you all for your advice. Starting today I am doing a food diary and trying to level my numbers out. Having a look at some of the books available. Hopefully they will help.. even just a little x

 

[Daibell]

Hi. Can I assume you are on the Basal/Bolus regime? Have you had guidance on getting the Basal balance right? When you say you have difficulty with carb counting is that with trying to work out the carbs in the foods you eat so you can set the best Bolus dose? We all have that problem to varying degrees particularly when eating out. Your figures imply you may not be taking enough insulin but I can only guess. Getting the Basal balance right is the first action. The normal Bolus ratio start point is 1 unit to 10gm of carbs and then tweaking that for your own body. Estimating the carbs in any meal is covered in various books. My DN gave me Roche leaflet when I started insulin which shows pictures of typical food plates and their carb content. After that it is guesswork I'm afraid.

 

[StephersJones]

Hi. Can I assume you are on the Basal/Bolus regime? Have you had guidance on getting the Basal balance right? When you say you have difficulty with carb counting is that with trying to work out the carbs in the foods you eat so you can set the best Bolus dose? We all have that problem to varying degrees particularly when eating out. Your figures imply you may not be taking enough insulin but I can only guess. Getting the Basal balance right is the first action. The normal Bolus ratio start point is 1 unit to 10gm of carbs and then tweaking that for your own body. Estimating the carbs in any meal is covered in various books. My DN gave me Roche leaflet when I started insulin which shows pictures of typical food plates and their carb content. After that it is guesswork I'm afraid.

Yes I'm basal/bolus. My consultant gave me set amounts insulin for each meal and for long acting. He gave me no knowledge of how to change my insulin to suit different meals. My dietician showed me the book with the different typical food plates and was telling me that I was taking too much insulin in regards to what I was eating. There has been no clear communication of how to manage this at all. Recording everything and counting the carbs today and have manages to get down from 19.8 to 11.2. Just trying to work out ratio. Doing 1 unit to 10g carbs at min

 

[Jamesdbrickell]

Get your basal right first then it will make the Bolus easier. Just did Dafne this week and it is brilliant ask to be put on the list.
A big thing was not to worry if you have high bg between meals as long as you are back in range for the next one.
You can check your basal by doing a fasting test. Wait 7 hours from your last meal and keep an eye on your bg readings. If you go up you might be having too little basal and if you go down too much. If you get below 4 stop the test and eat to put your levels up.
For carb counting get carbs&cals either book or app. Or buy things with a label and start by using this to work it out. Start is 1u per 10g but every ones ratio can be different. Just don’t correct with extra insulin between meals. I found it takes me 5 hours until my Bolus stops. Just do small changes and wait 2 days before the next change to give it time to work. Also note carbs eaten insulin injected and bg levels and be patient. You will get there.