Thoughts please

[Catlady 1]

Hi. Hoping you could offer me some advice please. In February I had my first consultant appointment (at the time T2 -15 yrs-on jardiance) due to normal meds not keeping BS down. Was put on bolus insulin( humalog) and metformin. A subsequent blood test showed I am in fact Type 1. However consultant at time happy as I was 80% of the time in the libre ‘green’ zone. However, since then I have now gone to 48% in the green zone. As I am always at the top of green zone or above, eating, even with insulin, takes my BS high. As it does this I also feel really dizzy and have started having to miss activities I go to after eating as dangerous to drive. I am also feeling very anxious about these levels which doesn’t help.
My consultant has given me an appointment for 24th September, which leaves me running high for yet another 2 months, which worries me in terms of potential damage. I am in effect being treated as type 2 in need of insulin therapy instead of type 1, and I feel strongly that basal insulin will help bring everything back to kilter.
Am I being overly worried, and have others been through this?
As I live abroad, I am tempted to pay to speak to a private specialist, but if they prescribe basal insulin or other therapy, I’m really not sure how that will be taken by the consultants here….i would have to come up with a plausible reason.

 

[Inka]

Yes, it sounds like you need basal insulin @Catlady 1 I have no idea why they wouldn’t give you that and stop the Metformin.

 

[everydayupsanddowns]

It does sound like an unusual set-up @Catlady 1

If you’ve been given a diagnosis with T1 because the oral meds were no longer effective is seems very odd to only offer mealtime insulins, as your beta cells seem to have reduced to a trickle.

What happens to your BGs overnight?

And what happens if you miss a meal (and take no bolus insulin)? Do your levels stay relatively steady, or do they drift upwards?

 

[Lucyr]

Yes, it sounds like you need bolus insulin @Catlady 1 I have no idea why they wouldn’t give you that and stop the Metformin.

The OP says they already take bolus insulin

 

[Inka]

The OP says they already take bolus insulin

Typo - now corrected.

 

[Catlady 1]

It does sound like an unusual set-up @Catlady 1

If you’ve been given a diagnosis with T1 because the oral meds were no longer effective is seems very odd to only offer mealtime insulins, as your beta cells seem to have reduced to a trickle.

What happens to your BGs overnight?

And what happens if you miss a meal (and take no bolus insulin)? Do your levels stay relatively steady, or do they drift upwards?

Hi. At the time I was given bolus and metformine as was still with the type 2 diagnosis (when I was first diagnosed with it many years ago in the UK they had run extra tests as they thought I was not straight forward type 2. Nothing came of that). The blood tests a month or so after being given bolus revealed I have type 1, but no changes to meds of bolus and metformine (because of onset in later life possibly). I thought it strange as I know basal insulin would sort this out.
Over night my BS is over 190 usually, and I often wake to figures over 200. If I don’t eat, my sugars remain high, sometimes small drop, then up again. I usually don’t eat between 7. Pm to about 9.30 am and yesterday I was 237 before breakfast. I very often am really dizzy after eating as blood sugar races up, si I just have to wait it out for about 40 minutes. This even happens with say raspberries, Greek yogurt and sprinkle of the no sugar added granola, my usual breakfast.
I guess I’m needing to know if I am raising my blood pressure over something that is manageable until September, or sort one way or another.

 

[Inka]

I wouldn’t leave it until September @Catlady 1 You say you’re in another country - are you able to see another consultant and get some basal insulin? Even if you only need small amounts, it would help.

 

[rebrascora]

Are you carb counting with the Humalog and have you been advised about using it to do corrections?

How long in advance of eating do you inject your bolus? You mention that your levels shoot up after eating, but injecting far enough in advance of eating breakfast should help to prevent that. If your levels are already above 10 (180mg/dl) when you wake up then that Humalog is likely to take longer to work than if you were at 5 or 6mmols (90-108mg).
I tend to inject my breakfast insulin as soon as I wake up and always before I get out of bed. This gives it more of a head start because my liver is releasing glucose as soon as I get out of bed, so the sooner I can get that insulin into my system the better. Then I keep an eye on my levels and eat breakfast when I can see that the insulin is working and bringing my levels down to mid range. This would probably not be a good strategy if you go for a walk/jog/bike ride etc before breakfast though as the insulin could cause you to hypo because the exercise will make you more sensitive to the insulin.

Is there any particular reason why you wait until 9.30am for breakfast? I wonder if this is a Type 2 strategy of extending your fast, rather than something you choose to do? Leaving it longer just means your levels are higher for longer and your liver will likely be releasing extra glucose, so having breakfast earlier might be helpful because eating stops the liver releasing glucose plus the insulin has a chance to start bringing you down as discussed in my paragraph above.

Obviously your situation is far from ideal and you should have basal insulin as well but we all know that getting urgent clinic appointments to resolve issues is not easy , so the above questions and suggestions are my thoughts on what you can do do potentially improve your levels until you get an appointment.

Do you know if your clinic has a helpline? If so, then perhaps ring and leave a message and they will usually ring you back in a day or two. If your clinic is in the UK be sure to give them mmol/litre results rather than the mg/dl readings you have quoted here, which means dividing by 18, so that there is no misunderstanding about your levels. If you are not resident in the UK then you should probably be using the local medical facilities for your treatment.

 

[Catlady 1]

Are you carb counting with the Humalog and have you been advised about using it to do corrections?

How long in advance of eating do you inject your bolus? You mention that your levels shoot up after eating, but injecting far enough in advance of eating breakfast should help to prevent that. If your levels are already above 10 (180mg/dl) when you wake up then that Humalog is likely to take longer to work than if you were at 5 or 6mmols (90-108mg).
I tend to inject my breakfast insulin as soon as I wake up and always before I get out of bed. This gives it more of a head start because my liver is releasing glucose as soon as I get out of bed, so the sooner I can get that insulin into my system the better. Then I keep an eye on my levels and eat breakfast when I can see that the insulin is working and bringing my levels down to mid range. This would probably not be a good strategy if you go for a walk/jog/bike ride etc before breakfast though as the insulin could cause you to hypo because the exercise will make you more sensitive to the insulin.

Is there any particular reason why you wait until 9.30am for breakfast? I wonder if this is a Type 2 strategy of extending your fast, rather than something you choose to do? Leaving it longer just means your levels are higher for longer and your liver will likely be releasing extra glucose, so having breakfast earlier might be helpful because eating stops the liver releasing glucose plus the insulin has a chance to start bringing you down as discussed in my paragraph above.

Obviously your situation is far from ideal and you should have basal insulin as well but we all know that getting urgent clinic appointments to resolve issues is not easy , so the above questions and suggestions are my thoughts on what you can do do potentially improve your levels until you get an appointment.

Do you know if your clinic has a helpline? If so, then perhaps ring and leave a message and they will usually ring you back in a day or two. If your clinic is in the UK be sure to give them mmol/litre results rather than the mg/dl readings you have quoted here, which means dividing by 18, so that there is no misunderstanding about your levels. If you are not resident in the UK then you should probably be using the local medical facilities for your treatment.

Hi Barbara. Thankyou for this, very useful.
It was interesting on changing to type 1 as I was so used to minimising carbs, here, they are still like the UK was when I started on this journey, and were cross with me for reducing them lol. Anyway, to answer your question, yes as much as I can. Need 1 unit to 5 carbs. I have tried injecting 15/20 mins ahead of eating, and it was slightly better then….but frowned on so I stopped. I think you’re right, best take charge of the situation and inject earlier. 9.30 breakfast….we’ll yes I used to fast like that bit now it’s because I’m retired and enjoy 2 cups of tea in bed and chilling first .
Yes I do use local hospital consultant, and have messaged re current issues and discomfort/problems, but still no appointment until 24 September. I am loathe to manage the situation using only bolus with corrections as well as meals etc, but maybe I will have to.

 

[helli]

I would add a note of caution with regards to pre-bolusing early if there is any chance that you could be interrupted and your breakfast (or any other meal you pre-bolus for) is delayed.

I used to pre-bolus 40 minutes before my lunch but, as I work, this was taken at my desk before my lunch break. On one occasion, I was called into an urgent meeting and ended up having a hypo.
But this doesn't have to be work. It could be a neighbour knocking in your door requesting assistance or a phone call from a family member or even getting distracted when reading the morning's news.

In the days before CGMs, if we followed the advice to only check when eating, we had no idea about the spike as long as BG was back in range by the next meal. I appreciate this was not ideal but 12 years of only finger pricks (followed by 8 years with a CGM) and I have no complications.
I am also conscious of not becoming a slave to my CGM (or diabetes).

 

[rebrascora]

I need to inject 45mins before breakfast most of the time unless my levels are low (in the 4s) when I wake up and I use Fiasp which may be a faster acting insulin than Humalog. When I used NovoRapid I needed even longer.... up to 75mins before eating breakfast. At other times of day I don't need to wait nearly so long, but breakfast time is when most of us are more insulin resistant, so it is common for many people to need a longer prebolus timing for breakfast, particularly if you wake up with high BG levels.

Do you have a CGM or are you just finger pricking?

I found that the guidance/rules I was given when I was started on using insulin needed quite a bit of self adjustment to fit my body and lifestyle and as long as I was mindful of the risks and made sure to monitor my levels closely and make slow steady adjustments, my consultant was happy for me to experiment and adjust to what my body needed. There is little point in giving you tools and then limiting your use of them so that you can't do a good job with them! You do need to keep yourself safe though so only experiment if you are able to closely monitor your levels to reduce the risk of causing a hypo. I started off doing this before CGM and would test every 10-15 mins after injecting my insulin for breakfast and then eat when my levels started to come down. Once I got consistent results and could be confident of needing to wait 30 or 45 mins or whatever, then I didn't need to test so intensively. Obviously CGM makes it a lot easier to keep an eye on your levels but just wanted to say, it can be done with finger pricks.

 

[Catlady 1]

I would add a note of caution with regards to pre-bolusing early if there is any chance that you could be interrupted and your breakfast (or any other meal you pre-bolus for) is delayed.

I used to pre-bolus 40 minutes before my lunch but, as I work, this was taken at my desk before my lunch break. On one occasion, I was called into an urgent meeting and ended up having a hypo.
But this doesn't have to be work. It could be a neighbour knocking in your door requesting assistance or a phone call from a family member or even getting distracted when reading the morning's news.

In the days before CGMs, if we followed the advice to only check when eating, we had no idea about the spike as long as BG was back in range by the next meal. I appreciate this was not ideal but 12 years of only finger pricks (followed by 8 years with a CGM) and I have no complications.
I am also conscious of not becoming a slave to my CGM (or diabetes).

Interesting and useful, Thankyou

 

[Proud to be erratic]

When I first read this, my instinct, @Catlady 1, was in response to 2 points: bolus corrections now and then juggling with bolus timings

However consultant at time happy as I was 80% of the time in the libre ‘green’ zone. However, since then I have now gone to 48% in the green zone. As I am always at the top of green zone or above, eating, even with insulin, takes my BS high. As it does this I also feel really dizzy and have started having to miss activities I go to after eating as dangerous to drive. I am also feeling very anxious about these levels which doesn’t help.

If you are constantly at the high end of being in Range, then why not take a specific bolus correction to bring yourself close to 5.6, with your Libre low Alarm set at 5.6 and be suitably armed with low response treatments to either intercept a falling BG from above 5.6, or after a low alert below 5.6. Eg a cookie (up to 12 gms carbs, with moderate fat content to make it slowr and more enduring) or a few grapes, or a single JB (faster response but less enduring). Even a Wurther original at intervals, to gently tweak your BG above 5.6 but below 6.5. Thus establish a fresh baseline.

Note that careful use of the CGM tech gives you a much better insight into what your BG is doing. That is the beauty of having CGM. It doesn't have to make you a slave to your diabetes but does let you explore options at moments when your D is singularly frustrating.

My consultant has given me an appointment for 24th September, which leaves me running high for yet another 2 months, which worries me in terms of potential damage. I am in effect being treated as type 2 in need of insulin therapy instead of type 1, and I feel strongly that basal insulin will help bring everything back to kilter.

I suspect you are right about a basal will give you that extra "weapon" in your D management armoury. But given there is no chance of getting an earlier appointment, until then (as @rebrascora has said) increasing your prebolus timings is another way to make best use of the bolus "weapon". Reduce the variables by having a regular, almost fixed, breakfast to explore the timing as well as refining the bolus size; for most of us mornings are when our natural insulin resistance is more evident and thus when we are more vulnerable to glycaemic variability.

Plus similar, ie repeatable lunches and perhaps slightly boringly continue this theme for evening meals. Make sure you both record in your Libre notes this standardisation process and remember to emphasise once you do get that Consult, that you've made this effort to regain some improved BG management, but you don't see this as acceptable to sustain this forever. You still need some basal!

Again the tech ca help you and diminish the prebolus timings risk.

Am I being overly worried, and have others been through this?
As I live abroad, I am tempted to pay to speak to a private specialist, but if they prescribe basal insulin or other therapy, I’m really not sure how that will be taken by the consultants here….i would have to come up with a plausible reason.

I don't think you should be overly worried; there is a difference in my mind between graceful acceptance of managing a less than satisfactory position on a temporary basis and allowing yourself to become over anxious and stressed about the situation. Stress is a known factor for potentially elevating BG: whether it's emotional stress (crying or laughing), medical stress or stress as a natural human response to challenging or demanding situations causing mental tension and worry.

While you could consider going private, you might just be able to duck this option by exploring an alternative strategy. You do at least have the bolus to allow you to help yourself bit further.

 

[Proud to be erratic]

NB, I should have added I am not in any way medically qualified. I spent 12 months with no CGM so have a short experience of being "on my own" before tech and since found how even unreliable tech helped me feel more aware of my BG and more aware of "cause and effect" thus helping MY BG management.

 

[Catlady 1]

I need to inject 45mins before breakfast most of the time unless my levels are low (in the 4s) when I wake up and I use Fiasp which may be a faster acting insulin than Humalog. When I used NovoRapid I needed even longer.... up to 75mins before eating breakfast. At other times of day I don't need to wait nearly so long, but breakfast time is when most of us are more insulin resistant, so it is common for many people to need a longer prebolus timing for breakfast, particularly if you wake up with high BG levels.

Do you have a CGM or are you just finger pricking?

I found that the guidance/rules I was given when I was started on using insulin needed quite a bit of self adjustment to fit my body and lifestyle and as long as I was mindful of the risks and made sure to monitor my levels closely and make slow steady adjustments, my consultant was happy for me to experiment and adjust to what my body needed. There is little point in giving you tools and then limiting your use of them so that you can't do a good job with them! You do need to keep yourself safe though so only experiment if you are able to closely monitor your levels to reduce the risk of causing a hypo. I started off doing this before CGM and would test every 10-15 mins after injecting my insulin for breakfast and then eat when my levels started to come down. Once I got consistent results and could be confident of needing to wait 30 or 45 mins or whatever, then I didn't need to test so intensively. Obviously CGM makes it a lot easier to keep an eye on your levels but just wanted to say, it can be done with finger pricks.

When I first read this, my instinct, @Catlady 1, was in response to 2 points: bolus corrections now and then juggling with bolus timings

If you are constantly at the high end of being in Range, then why not take a specific bolus correction to bring yourself close to 5.6, with your Libre low Alarm set at 5.6 and be suitably armed with low response treatments to either intercept a falling BG from above 5.6, or after a low alert below 5.6. Eg a cookie (up to 12 gms carbs, with moderate fat content to make it slowr and more enduring) or a few grapes, or a single JB (faster response but less enduring). Even a Wurther original at intervals, to gently tweak your BG above 5.6 but below 6.5. Thus establish a fresh baseline.

Note that careful use of the CGM tech gives you a much better insight into what your BG is doing. That is the beauty of having CGM. It doesn't have to make you a slave to your diabetes but does let you explore options at moments when your D is singularly frustrating.

I suspect you are right about a basal will give you that extra "weapon" in your D management armoury. But given there is no chance of getting an earlier appointment, until then (as @rebrascora has said) increasing your prebolus timings is another way to make best use of the bolus "weapon". Reduce the variables by having a regular, almost fixed, breakfast to explore the timing as well as refining the bolus size; for most of us mornings are when our natural insulin resistance is more evident and thus when we are more vulnerable to glycaemic variability.

Plus similar, ie repeatable lunches and perhaps slightly boringly continue this theme for evening meals. Make sure you both record in your Libre notes this standardisation process and remember to emphasise once you do get that Consult, that you've made this effort to regain some improved BG management, but you don't see this as acceptable to sustain this forever. You still need some basal!

Again the tech ca help you and diminish the prebolus timings risk.

I don't think you should be overly worried; there is a difference in my mind between graceful acceptance of managing a less than satisfactory position on a temporary basis and allowing yourself to become over anxious and stressed about the situation. Stress is a known factor for potentially elevating BG: whether it's emotional stress (crying or laughing), medical stress or stress as a natural human response to challenging or demanding situations causing mental tension and worry.

While you could consider going private, you might just be able to duck this option by exploring an alternative strategy. You do at least have the bolus to allow you to help yourself bit further.

A very comprehensive thought process Thankyou, gives me more confidence to take charge of the situation with, as you say, the armoury I have available, and stand my ground when I do see the consultant. I will try the suggestions both you and @rebrascora have suggested, put my big girl pants on and get on with it. Definitely feel more positive and less stressed now .

 

[rebrascora]

Start with small changes and build on them. Don't assume that because I inject 45 mins before breakfast, that might work for you because there are many people who would hypo in that time scale. It is really quite individual and will often also depend on your starting BG when you inject. The higher you are usually the longer you need to wait, but the general advice is to increase it by about 5 mins every few days and keep a close eye on things until you find a good balance point where you are satisfied that your levels don't spike too high after a meal but also don't drop too low. Keep a close eye on things whilst you are experimenting and maybe set your low alarm at 5.0 or maybe even 5.6 if you don't currently already have it set that high as an extra security net.

 

[Catlady 1]

Start with small changes and build on them. Don't assume that because I inject 45 mins before breakfast, that might work for you because there are many people who would hypo in that time scale. It is really quite individual and will often also depend on your starting BG when you inject. The higher you are usually the longer you need to wait, but the general advice is to increase it by about 5 mins every few days and keep a close eye on things until you find a good balance point where you are satisfied that your levels don't spike too high after a meal but also don't drop too low. Keep a close eye on things whilst you are experimenting and maybe set your low alarm at 5.0 or maybe even 5.6 if you don't currently already have it set that high as an extra security net.

Hi, yes fully understood Thankyou. I did at the start of using bolus have 15 min gap, but never dared go further. That said, it takes 1 1/2 hrs for it to start taking effect usually, maybe because I run high as you suggest. So, I’ll start at 15 mins and take it from there over time, with alarms set.

 

[rebrascora]

Hi, yes fully understood Thankyou. I did at the start of using bolus have 15 min gap, but never dared go further. That said, it takes 1 1/2 hrs for it to start taking effect usually, maybe because I run high as you suggest. So, I’ll start at 15 mins and take it from there over time, with alarms set.

I have on the odd occasion injected and waited 2 hours before eating when my levels were very high.

 

[mashedupmatt]

10-20 mins is usually ok for me before food (on Fiasp) - but had quite a high carb meal (including my nemesis, 2 slices of thick white bread) this evening and am regretting not taking it earlier (plus a little bit more, because of the white bread!) so it is all very individual, and I'm learning every day

 

[Proud to be erratic]

@Catlady 1, wholly unrelated to your post, but are the units for BG consistently mg/dl around France or a more regional usage. This came to my attention quite recently when @PattiEvans recounted her experiences after needing patient bed space in a Bordeaux Hospital 2 or 3 weeks ago. There was a period of confusion because her BG reading was at the high 2s and initially the French Nursing staff didn't appreciate that her reading was dreadfully low - in mmol/L. I was under the impression, from a friend who lives in the Paris area and their son, recently diagnosed T1, was talking about BG in mmol/L. Since my wife and I are spending much of September "pottering" through France to spend a few days in Provence - it occurred to me that it could be prudent for me to be aware what the French practice normally is for BG units.