New and feeling like I’m never gonna get there.

[Chris04]

I googled it and I think it is an out of hours GP service in Northern Ireland.

You are absolutely right...it is our “Out of hours”

 

[Chris04]

Ah - Bing told me it was an ancient name for part of Scotland! We may all be part of the UK, but the health service in NI is nothing whatever like it is in the other 3 countries.

You think the doctor at the hospital was wrong?

 

[trophywench]

I'm just very concerned about how much damage to your body the constantly too high BG is wreaking, Chris.

I'd be dead on my feet if mine were that high for more than an hour. Anything above approx 14 my meter beeps at me and tells me to check for ketones, cos it's the ketones that cause organs to fail since they literally turn the blood acidic.

 

[Chris04]

I'm just very concerned about how much damage to your body the constantly too high BG is wreaking, Chris.

I'd be dead on my feet if mine were that high for more than an hour. Anything above approx 14 my meter beeps at me and tells me to check for ketones, cos it's the ketones that cause organs to fail since they literally turn the blood acidic.

I phoned my GP this morning and she has prescribed different antibiotics. She told me to phone the nurse about the high levels. So I tried again but I only got the answering machine. My Ketones are still ok, though how I don’t know. I am trying to bring the levels down.. I know I need my Toujeo adjusted but the nurse told me weeks ago not to adjust it. She said then that she would look at it again the following week but that never happened. I think if she doesn’t get back to me. I will raise it by 1 myself. Do you self adjust your long lasting insulin?

 

[rebrascora]

Hi Chris

Yes many of us adjust our basal (long acting) insulin ourselves but the nurses like us to have been on an intensive course like DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is, which gives you information on how and when to adjust it. Toujeo is a very long acting insulin and it may take a day or 2 or even 3 for any change to take effect. They normally start you on a very conservative dose to begin with to bring your levels down slowly and then increase it steadily to bring your readings more down into range once they see how you are reacting to it. I would say that it is up to you if you want to try an increase of one unit if the nurse still doesn't get back to you but if you do decide to do that, make sure you have plenty of time over the next 2-3 days and plenty of test strips to monitor your BG regularly to keep you safe and you should not increase it again within that 3 day period at least.
These are really difficult times so whilst you shouldn't be left to try to manage this yourself, I don't think it would be unreasonable to do so if you are not getting any response from the people who are supposed to be helping you. Just be very cautious if you do decide to increase it.
Make sure if you leave another message not to address it to one specific person (ie a named DSN) as they may not be available and make sure to say that it is urgent and you have left several messages before over the past few weeks and no one has got back to you.
Good luck and keep us posted with whatever you do and any problems that arise.

 

[Chris04]

Hi Chris

Yes many of us adjust our basal (long acting) insulin ourselves but the nurses like us to have been on an intensive course like DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is, which gives you information on how and when to adjust it. Toujeo is a very long acting insulin and it may take a day or 2 or even 3 for any change to take effect. They normally start you on a very conservative dose to begin with to bring your levels down slowly and then increase it steadily to bring your readings more down into range once they see how you are reacting to it. I would say that it is up to you if you want to try an increase of one unit if the nurse still doesn't get back to you but if you do decide to do that, make sure you have plenty of time over the next 2-3 days and plenty of test strips to monitor your BG regularly to keep you safe and you should not increase it again within that 3 day period at least.
These are really difficult times so whilst you shouldn't be left to try to manage this yourself, I don't think it would be unreasonable to do so if you are not getting any response from the people who are supposed to be helping you. Just be very cautious if you do decide to increase it.
Make sure if you leave another message not to address it to one specific person (ie a named DSN) as they may not be available and make sure to say that it is urgent and you have left several messages before over the past few weeks and no one has got back to you.
Good luck and keep us posted with whatever you do and any problems that arise.

Thank you so much. I will wait and see if anyone phones just incase. They have me on the waiting list for DAFNE but understandably it will probably not happen for a while.

 

[trophywench]

@Chris04 - there is another such course, which was licensed by the NHS for delivery to Type 1 diabetics, but teaches the same skill - ie Dose Adjustment For Normal Eating.

The alternative course is called BERTIE and is available online!

Bertie Diabetes

www.bertieonline.org.uk

I did the original version of this (some of us were involved in the Beta testing of it) just before I did the official course at my hospital which was based firmly on BERTIE but local courses have to have a different name, so the Coventry etc course is CARBS 4 1.

I would still recommend you do the 'real' one even if you complete the online course - you pick up as much from other folks' lived experiences as you do from the 'Theory' info.

 

[trophywench]

PS - yeah ! to the extra 1u Toujeo. Try it and test test test. 'Suck it and see' indeed! - accept that you are the guinea pig in an experiment and enjoy the voyage of discovery.

 

[Ian Brown]

Hi Chris04,

I've used cranbury capsules for UTIs before, or the light juice has a slightly lower sugar content. It might help. I believe it changes the PH of the urine and helps kill the bugs.

Beware the fructose content though. I don't know of a sugar free brand, maybe someone else here does.

Best of Luck

 

[Bruce Stephens]

I would still recommend you do the 'real' one even if you complete the online course - you pick up as much from other folks' lived experiences as you do from the 'Theory' info.

Yes, the interacting with other people matters, as do discussions with the people running it: they can give answers to specific questions. (I understand DAFNE online is supposed to be starting shortly, so for some people that'll be an option.)

 

[everydayupsanddowns]

I phoned my GP this morning and she has prescribed different antibiotics. She told me to phone the nurse about the high levels. So I tried again but I only got the answering machine. My Ketones are still ok, though how I don’t know. I am trying to bring the levels down.. I know I need my Toujeo adjusted but the nurse told me weeks ago not to adjust it. She said then that she would look at it again the following week but that never happened. I think if she doesn’t get back to me. I will raise it by 1 myself. Do you self adjust your long lasting insulin?

If you are on ABs, the underlying infection could well be wreaking havoc with your BGs.

Have you been working through ‘sick day rules’ to help adjust your doses?

Sickday rules pdf

Sick day rules flowchart from Leicester diabetes centre. Particularly useful for people with Type 1 Diabetes during the Coronavirus outbreak.

www.t1resources.uk

 

[Chris04]

Thanks everyone. I received a call today from the diabetic nurse in charge, who looked after me when I was in hospital. He has increased my Toujeo from 9 to 11. I’ve to wait and see how it goes until Thursday, then if it’s still above 10 in the mornings, I’ve to increase it again to 12 and ring them next week. I am experimenting with the ratio to see if that helps. I wasn’t sure if I should still be following the Sickday rules or not as my ketones are not up. My BS was 14 this morning which was definitely an improvement and they have stayed (15 at one point) around there. It’s not great I know but definitely an improvement. I will look into BERTIE. You have all been so helpful...I’m not sure what I would’ve done without you to be honest. Thank you again.

 

[SB2015]

Hi @Chris04

I have two tables which I follow, one is for high BG, and the other for sick days.
Whatever is happening I follow the rules to get the levels back down. Like @trophywench I feel very rough when I am above 14 so just want them back down ASAP. (Having said that I was wondering why my level was at 18 when I got the podiatrist!! I had calculated my insulin for the whole cheese scone but failed to deliver it!! We all wobble at times)

Glad that they have advised in the increase of your Touejo and you have a plan for the next week.
Keep in touch.

 

[Chris04]

Hi @Chris04

I have two tables which I follow, one is for high BG, and the other for sick days.
Whatever is happening I follow the rules to get the levels back down. Like @trophywench I feel very rough when I am above 14 so just want them back down ASAP. (Having said that I was wondering why my level was at 18 when I got the podiatrist!! I had calculated my insulin for the whole cheese scone but failed to deliver it!! We all wobble at times)

Glad that they have advised in the increase of your Touejo and you have a plan for the next week.
Keep in touch.

More questions lol. You say you have a table for high BG. Can you tell me what I’m supposed to do if my levels are high after the infection totally goes? I mean before the UTI, my BG was higher thank it should have been. I was counting everything etc but the nurse never gave me any way to bring it down So I assumed I had to put up with it until it came down itself. After learning on here I realise that was wrong.

 

[rebrascora]

Getting your basal dose right will probably bring it down so hang fire with any bolus insulin corrections until you get that basal insulin dose sorted.... as I said it will take up to 3 days to settle once you increase it, so see how that goes first.

 

[SB2015]

Hi @Chris04

It sounds like the increases in your basal insulin are beginning to have an impact.

Have a look back at the link in @everydayupsanddowns post. Mine is much the same using the quick acting to correct errors I make in other things. This gives you general formulas to use. Is your nurse still saying nothing about doing corrections to bring high levels down? It will take some time to get the basal insulin sorted but I would want her to advise you on what to do in the meantime. You should be taught how to do corrections with the quick acting insulin. Please keep asking about this.

Do the sick day rules that you have been given tell you how to increase your insulin to bring them down. The difference between my charts that include ketones is simply the frequency at which I would do a repeat check on BG. Mine then advises me how to work out a correction. We are not allowed to advise on changes to your doses, we can only refer your to general advice. Hence we keep telling you to go back to your DSN. However you have picked up the idea that there are strategies that they can teach you and that people would not choose to stay high.

You will get there.

 

[everydayupsanddowns]

I was counting everything etc but the nurse never gave me any way to bring it down So I assumed I had to put up with it until it came down itself. After learning on here I realise that was wrong.

It might be helpful to ask your nurse about ‘correction factors’, which is an extra snifter of insulin that is added to the calculated meal dose to attempt to reduce any extra glucose above your ideal ‘mid range’ BG before your meal.

Even better you could ask about a ‘smart meter’ or bolus calculator which your Nurse can help you set up, and which helps calculate doses with more subtle ratios and correction factors, which you can then round up or down to either units or half-units depending on the pens you have. They can really help take the faff out of the whole calculation business 🙂

 

[Chris04]

Hi everyone. The other nurse told me about adjusting ratios. I don’t have half units on my pens so difficult to increase by 1 eg 1 in 11, has to be 1 in 12 to make any real difference. I just wondered if you have to wait until mealtime, or can you adjust in between ....or if your BS starts soaring at bedtime? I’ve never heard of a “smart meter”. But I will definitely ask the nurse, if I get speaking to her.

 

[trophywench]

So .... let's tell you how to fathom out your own carb to (fast acting) insulin ratio and correction jab doses.

Test BG before you eat. Now calculate the carbs in something easy, eg a slice of bread or two biscuits - just read the wrapper. Let's say 20g carb. Eat it and see how much it increases your BG by testing hourly after, and seeing when it stops increasing.

Similarly for correction doses, when BG is higher than you want inject 1u of fast acting and test test test exactly the same. How quickly does it reduce your BG and by how much?

I know that 1 unit of Novorapid reduces my BG by 3.0 on the meter, and therefore also know that for each 10g carb, I need 1u insulin - because 10g carb eaten without any Novorapid increases my meter reading by 3.0.

 

[Chris04]

Th

So .... let's tell you how to fathom out your own carb to (fast acting) insulin ratio and correction jab doses.

Test BG before you eat. Now calculate the carbs in something easy, eg a slice of bread or two biscuits - just read the wrapper. Let's say 20g carb. Eat it and see how much it increases your BG by testing hourly after, and seeing when it stops increasing.

Similarly for correction doses, when BG is higher than you want inject 1u of fast acting and test test test exactly the same. How quickly does it reduce your BG and by how much?

I know that 1 unit of Novorapid reduces my BG by 3.0 on the meter, and therefore also know that for each 10g carb, I need 1u insulin - because 10g carb eaten without any Novorapid increases my meter reading by 3.0.

That’s great thanks. I have to increase my basal to 12 tonight (is still reading high...13 first thing) so I’ll see what my BS is like in morning. This makes things a lot clearer.