6 months in and looking for advice please

[Kwilkins]

My son aged 21 was diagnosed 6months ago, and is just coming out of the honeymoon period it appears, but he’s struggling with levels all over the place. He had a period where he was getting 10 hypos a day, now his levels seem to be spiking high a lot of the time. He can eat the same thing on different days and his levels react differently. He’s also got a cold for the first time since diagnosis and is struggling with feeling worse than he would usually do and also managing levels. I would appreciate any advice on how to manage his levels any better to stop the sharp highs and lows as he’s finding it really tiring and draining

 

[Inka]

Does he have a Libre @Kwilkins ? Are the erratic sugars occurring at particular times of the day? Colds can cause high sugars. All he can do is correct and do the best he can. Does he know how to correct?

 

[Kwilkins]

Does he have a Libre @Kwilkins ? Are the erratic sugars occurring at particular times of the day? Colds can cause high sugars. All he can do is correct and do the best he can. Does he know how to correct?

Thank you for your reply, He does have a libre and has corrected a few times (sometime over corrected where he’s learning) when it’s gone too high. I think he feels he doesn’t know how much to inject for each meal when the same food can give different reactions in his levels. He tends to get big spikes or dips and they shoot up and down very quickly. We know it can take a long time to work this all out but he just wants to feel as normal as possible rather than tired,drained and emotional because of the erratic levels.

 

[Inka]

@Kwilkins If his honeymoon is ending, his insulin needs might have changed. It would be sensible for him to do a basal test as if his basal amount is wrong, it makes it much harder to get control. After he’s sure his basal is ok, he can move on to his meal ratios and do one meal at a time, ie breakfast, lunch, etc.

To help stop the spikes, he could experiment with giving his bolus/meal injection slightly more in advance, moving it cautiously 5 mins earlier and then another 5 mins if necessary until he reaches the sweet spot. He might need to bolus further in advance of breakfast than for his evening meal.

I find it easier to have similar breakfasts and lunches most days. That way, I know the carbs and have an idea of how things will go. Of course, things can go haywire but because I usually have the same meal, I know how to best deal with the varieties of haywire when they occur. This is less mental effort.

What insulins does he take? Do tell him it’s ok. We all understand how wearing rollercoaster sugars are. They can usually be reduced with a bit of thought and work.

 

[Kwilkins]

That’s very helpful thank you, you mention doing a basal test, is there a way to determine how much basal you should be taking, I know he’s been altering his basal dose to try and help but more on a random and trial and error basis?

 

[everydayupsanddowns]

That’s very helpful thank you, you mention doing a basal test, is there a way to determine how much basal you should be taking, I know he’s been altering his basal dose to try and help but more on a random and trial and error basis?

Sorry your lad is having such a tough time with his glucose levels. Diabetes changing the rules on a whim can be so draining, and you can end up chasing your tail, alternating between ‘rage boluses’ and almost feeling scared to inject at all

Yes, basal testing is a way of systematicslly checking and adjusting your basal insulin doses. It took me a long time to discover the technique, but it made such a difference to me, and really helped reduce diabetes ‘randomness’, especially when I realised how often my basal needs changed through the year. There’s a write-up here:
https://www.mysugr.com/en/blog/basal-rate-testing/

 

[Inka]

That’s very helpful thank you, you mention doing a basal test, is there a way to determine how much basal you should be taking, I know he’s been altering his basal dose to try and help but more on a random and trial and error basis?

Yes, there is as @everydayupsanddowns has helpfully linked to. It’s a bit of a pain but spreading it over days is less hassle. I’ve found that even a slightly wrong basal can really mess with blood sugar results. Think of it as the foundation of a house. It needs to be good else all your building work on top of it will be wonky.

 

[SimonP]

Might also be worth splitting bolus for (all) meals (e.g. take say half towards the start as he would have done previously, also see the post by @Inka above re moving this time forwards and backwards a bit), then monitoring how he reacts and taking the second half (or more or less) later on (if necessary), etc.

To do this effectively it's worth having a log going where you can see IoB and CoB (so XDrip+ for example, I'm not sure whether the Libre app does something similar, there are likely other options, including pen and paper) so that you can make the decisions about how much/when to do the latter part of a split dose knowing how much is left of both insulin and food to be processed.

 

[rebrascora]

The key thing with diabetes is to only change one thing at once and give it a few days to see how that change pans out before you change it again if necessary ie. the change has elicited a positive response but not quite done as much as you needed it to.

Check basal first but if he is using Tresiba then a full basal test is pretty much irrelevant because the dose needs to be adjusted to keep him steady overnight and any discrepancy during the day would then need to be made up with corrections or change in meal ratios. This is because Tresiba is so very long acting and flat in profile, whereas some other
basal insulins are shorter and have a peak of activity and you can adjust the doses and timing of them to give you that peak when you need it, or more insulin during the day and less at night. Tresiba does not offer that flexibility so you have to set the dose to keep your levels stable through the night (a more or less horizontal line whilst you sleep most of the time) and use more quick acting insulin during the day if necessary to cover any shortfall.
Other shorter basal insulins like Lantus, Levemir, Abasaglar, Humalog etc a full basal test is worth while.

Mealtime spikes are usually a timing issue as mentioned above and increasing the time between injecting and eating usually resolves it, but it takes careful experimentation to find the timing that works for your body and the food you eat and the insulin you use. For instance I am a bit of an extreme but I need to inject my Fiasp about 45mins before I eat breakfast to prevent my levels spiking and I inject it before I get out of bed on a morning. When I used Novo(not so)Rapid it used to take 75 mins, hence the change to Fiasp. Most other people would hypo waiting this long but this is what works for my body and your son has to find what works for him. So if he currently injects just 10 mins before breakfast, then suggest he tries 15 mins tomorrow for a few days and then maybe 20 mins if he is still spiking too high.... and so on. It is important to note that breakfast usually needs longer than other meals for the insuin to get going so I may need 45 mins at breakfast but only 15-20mins at other times of day. It is also important to know that your levels when you start can have a bearing on how quickly your insulin kicks in. So if I wake up and my levels are in the low to mid 4s I will usually just need 25mns instead of 45mins, whereas if my waking reading is 8 or above, I might need an hour or more before I eat breakfast. Rather than time it each morning I just watch my Libre and eat when I can see the insulin kicking in and my levels starting to drop. I am sure it all sounds pretty complicated but gradually you get used to it and it just becomes second nature to take all these things into consideration and once you get your basal dose holding you steady you start to get more consistent results and things start to make a bit more sense. I always know when my basal needs adjusting when I have a few days where I am fighting my levels and getting frustrated. When my basal is right, it all becomes smooth sailing again.

My honeymoon period had 3 quite distinct steps before it ended where my basal insulin needs increased over a period of a couple of months (probably less time in reality because I resisted increasing my basal for several weeks and battled it with meal time insulin initially and then stabilized for about 6 months before increased again. I have been stable for the past 2 and a bit yyears now give or take adjustment for more or less exercise.... the power of exercise should not be underrated and will continue to impact your son's levels for up to 48 hours afterwards during the day and night. My night time levels are most affected by exercise the previous day, so exercise is something else that could be causing erratic results afterwards and that you have to consider when levels are going haywire. It isn't just whilst you are exercising but at least a whole 24hours afterwards, maybe longer. I reduced my basal dose by 3 units last night after a very active afternoon yesterday and I still hypoed last night more than once. Dread to think what would have happened if I hadn't dropped those 3 units!

Has your son been offered a DAFNE course or whatever your local equivalent is? It is an intensive education course, usually a whole week or perhaps split into 1 day a week for several weeks? If h
je hasn't, then he should ask about it as for me that gave me the confidence to know what I was doing adjusting my basal insulin. It is also a fantastic opportunity to mix with other Type 1s in person and learn from each other, but more importantly, to feel normal for a week because you are all dealing with the same challenges.

To me, splitting meal time doses is a bit more advanced than I was ready for at 6 months, and for me many meals don't need a split dose and it would be detrimental if I split my breakfast dose because I need it all up front ASAP plus 2 extra units to deal with Foot on the Floor.

 

[PattiEvans]

If there is no offer of a DAFNE (or similar) course locally then there is an online course he could do. See Bertie online carb counting course

I would also recommend "Think like a Pancreas" by Gary Scheiner and https://www.amazon.co.uk/Diabetes-Children-Adolescents-Young-Adults-dp-1859599893/dp/1859599893/ref=dp_ob_title_bk the book by Ragnar Hanas. I haven't read the second book, but other members on here recommend it. I got most of my understanding from the Gary Scheiner book early on in my diagnosis and it has been invaluable to me.

 

[Kwilkins]

The key thing with diabetes is to only change one thing at once and give it a few days to see how that change pans out before you change it again if necessary ie. the change has elicited a positive response but not quite done as much as you needed it to.

Check basal first but if he is using Tresiba then a full basal test is pretty much irrelevant because the dose needs to be adjusted to keep him steady overnight and any discrepancy during the day would then need to be made up with corrections or change in meal ratios. This is because Tresiba is so very long acting and flat in profile, whereas some other
basal insulins are shorter and have a peak of activity and you can adjust the doses and timing of them to give you that peak when you need it, or more insulin during the day and less at night. Tresiba does not offer that flexibility so you have to set the dose to keep your levels stable through the night (a more or less horizontal line whilst you sleep most of the time) and use more quick acting insulin during the day if necessary to cover any shortfall.
Other shorter basal insulins like Lantus, Levemir, Abasaglar, Humalog etc a full basal test is worth while.

Mealtime spikes are usually a timing issue as mentioned above and increasing the time between injecting and eating usually resolves it, but it takes careful experimentation to find the timing that works for your body and the food you eat and the insulin you use. For instance I am a bit of an extreme but I need to inject my Fiasp about 45mins before I eat breakfast to prevent my levels spiking and I inject it before I get out of bed on a morning. When I used Novo(not so)Rapid it used to take 75 mins, hence the change to Fiasp. Most other people would hypo waiting this long but this is what works for my body and your son has to find what works for him. So if he currently injects just 10 mins before breakfast, then suggest he tries 15 mins tomorrow for a few days and then maybe 20 mins if he is still spiking too high.... and so on. It is important to note that breakfast usually needs longer than other meals for the insuin to get going so I may need 45 mins at breakfast but only 15-20mins at other times of day. It is also important to know that your levels when you start can have a bearing on how quickly your insulin kicks in. So if I wake up and my levels are in the low to mid 4s I will usually just need 25mns instead of 45mins, whereas if my waking reading is 8 or above, I might need an hour or more before I eat breakfast. Rather than time it each morning I just watch my Libre and eat when I can see the insulin kicking in and my levels starting to drop. I am sure it all sounds pretty complicated but gradually you get used to it and it just becomes second nature to take all these things into consideration and once you get your basal dose holding you steady you start to get more consistent results and things start to make a bit more sense. I always know when my basal needs adjusting when I have a few days where I am fighting my levels and getting frustrated. When my basal is right, it all becomes smooth sailing again.

My honeymoon period had 3 quite distinct steps before it ended where my basal insulin needs increased over a period of a couple of months (probably less time in reality because I resisted increasing my basal for several weeks and battled it with meal time insulin initially and then stabilized for about 6 months before increased again. I have been stable for the past 2 and a bit yyears now give or take adjustment for more or less exercise.... the power of exercise should not be underrated and will continue to impact your son's levels for up to 48 hours afterwards during the day and night. My night time levels are most affected by exercise the previous day, so exercise is something else that could be causing erratic results afterwards and that you have to consider when levels are going haywire. It isn't just whilst you are exercising but at least a whole 24hours afterwards, maybe longer. I reduced my basal dose by 3 units last night after a very active afternoon yesterday and I still hypoed last night more than once. Dread to think what would have happened if I hadn't dropped those 3 units!

Has your son been offered a DAFNE course or whatever your local equivalent is? It is an intensive education course, usually a whole week or perhaps split into 1 day a week for several weeks? If h
je hasn't, then he should ask about it as for me that gave me the confidence to know what I was doing adjusting my basal insulin. It is also a fantastic opportunity to mix with other Type 1s in person and learn from each other, but more importantly, to feel normal for a week because you are all dealing with the same challenges.

To me, splitting meal time doses is a bit more advanced than I was ready for at 6 months, and for me many meals don't need a split dose and it would be detrimental if I split my breakfast dose because I need it all up front ASAP plus 2 extra units to deal with Foot on the Floor.

Thank you so much for taking the time to give such a detailed reply, that’s really helpful and provides more understanding. He could definitely try moving the timings of his jabs. At the moment it just feels we have lots of questions where he’s learning how to deal with it all! Can I ask please what foot on the floor is and taking an extra 2 units for this?

 

[Kwilkins]

If there is no offer of a DAFNE (or similar) course locally then there is an online course he could do. See Bertie online carb counting course

I would also recommend "Think like a Pancreas" by Gary Scheiner and https://www.amazon.co.uk/Diabetes-Children-Adolescents-Young-Adults-dp-1859599893/dp/1859599893/ref=dp_ob_title_bk the book by Ragnar Hanas. I haven't read the second book, but other members on here recommend it. I got most of my understanding from the Gary Scheiner book early on in my diagnosis and it has been invaluable to me.

Thank you I will have a look at the book x

 

[rebrascora]

Can I ask please what foot on the floor is and taking an extra 2 units for this?

Dawn Phenomenon (DP) and Foot On The Floor (FOTF) are where the liver pumps out a surge of glucose into the blood stream to give you energy to start the day. DP often starts before you wake up and you can see it on a Libre graph if you have one and you get DP whereas FOTF happens when you swing your legs out of bed and stand up, ie put your feet on the floor. It is believed to date back to prehistoric times when we didn't have kitchens full of food and had to go out and hunt or gather our first meal of the day and was to give us energy to do that. You don't need much glucose to walk into the kitchen and open the fridge! Everyone gets it but non diabetic people release insulin to deal with it so it doesn't cause them a problem. Most of the time our liver trickles out small amounts of glucose throughout the day and night, sometimes a little more and sometimes less, and our basal insulin is there to deal with it, but DP/FOTF is quite a large surge by comparison and my levels can rise by as much as 6mmols in the space of an hour once I get out of bed, so I need to use my fast acting insulin to deal with it because my basal just can't provide that amount of cover. I found the best way to do this for me was to inject that fast acting insulin as soon as I wake up and before the rise starts to happen. I generally inject my breakfast bolus at the same time before I get out of bed because I am quite resistant to insulin in the morning andI usually need 45 mins prebolus time before breakfast to prevent my levels spiking aftr breakfast, so if I inject before I get out of bed, I have time to get washed and dressed and then eat breakfast. This would be too long for some people so you have to carefully experiment with the prebolus timing by increasing it by a few minutes each day to find the timing that works for each individual. I don't consider this 2 units part of my breakfast ratio becaus,e if I don't have any breakfast I still need that 2 units (maybe just 1.5 if my levels are in the 4s) when I wake up to deal with that FOTF liver dump. Injecting it as soon as I wake up means that it gets time to hit my blood stream at the same time as the liver is releasing the glucose so it balances it out. If I inject it later, my levels go high and take a long time to come down because the insulin is trying to catch up and then I have to wait longer for my breakfast or accept a big spike in BG levels which is what I am trying to avoid. I suppose you could look at it as a correction in advance.

Your son may not need as much as I do to counteract it or this strategy may not work at all for him. Some people find eating something low carb as soon as they wake up helps to stop DP/FOTF., like a piece of cheese. Some people find that if they have drunk alcohol the night before they don't get DP/FOTF the next morning or a lot of exercise the previous day can reduce it This routine of 1.5-2 units of bolus insulin works for me. Your son has to figure out a strategy that works for him.

 

[Kwilkins]

Thank you I do appreciate your time and that makes a lot of sense and he does nearly always get a large spike at breakfast so that gives us ideas to try and more knowledge as to understanding it all.