-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Not new to Diabetes
- Thread starter Dengel
- Start date
- Status
I have a Medtronic pump, using Novorapid. My diabetes has been described as brittle but I believe there is an answer out there I just don’t know what it is yet! I envy and can only dream of a normal HbA1c as the first 7 years of being diabetic took no effort to stay in range.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome from me too.
Do you have Freestyle Libre to help you manage your brittle diabetes or do you perhaps have the Guardian sensors to loop with your Medtronic pump? If not, is that something that you have considered?
What sort of HbA1c results are you getting? I think they are rather more realistic about HbA1c results now than they used to be and realise that it often doesn't tell the whole story whereas "Time in Range" on CGM gives a more accurate picture of diabetes management. There is no way I would even attempt to get an HbA1c under 42, assuming that is what you mean by "normal" as I would need to be hypo several times every day to achieve it....and that happens rather too often anyway, whereas I can average 90% TIR most of the time with very little above range and still end up with an HbA1c of low 50s. I know I would love to get an HbA1c below 48 but I can't see me being able to manage that and I already devote a lot of time and discipline to my diabetes, so I can't see how I can improve on it.... short of possibly going onto a closed loop pump system, which I am personally not interested in... at least at the moment.
I wonder if you were one of the lucky ones whose honeymoon period rounded the edges off your diabetes. Mine was the other way and my pancreas threw insulin out in fits and starts making things unpredictable, so I am happier now it has given up altogether and it is just me calling the shots.
Do you have Freestyle Libre to help you manage your brittle diabetes or do you perhaps have the Guardian sensors to loop with your Medtronic pump? If not, is that something that you have considered?
What sort of HbA1c results are you getting? I think they are rather more realistic about HbA1c results now than they used to be and realise that it often doesn't tell the whole story whereas "Time in Range" on CGM gives a more accurate picture of diabetes management. There is no way I would even attempt to get an HbA1c under 42, assuming that is what you mean by "normal" as I would need to be hypo several times every day to achieve it....and that happens rather too often anyway, whereas I can average 90% TIR most of the time with very little above range and still end up with an HbA1c of low 50s. I know I would love to get an HbA1c below 48 but I can't see me being able to manage that and I already devote a lot of time and discipline to my diabetes, so I can't see how I can improve on it.... short of possibly going onto a closed loop pump system, which I am personally not interested in... at least at the moment.
My HbA1c was 68 last July and thats with putting in a lot of effort, it was seen as very good for me at the clinic. I have a freestyle Libra and this morning I was in range 35% but it varies I stay in range between 30 and 70%. I need to talk to others about it but I cry when I do.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Sorry to hear that you get so emotional about it but can understand. I have learned such a lot here from other diabetics I am sure you can pick up a tip or two which can help. The advice here is based on what actually works rather than what the DSN or consultant tell us should work and we encourage people to carefully experiment on themselves rather than just following guidance because we are all different and wat will work for one person may not work for another.
For instance I need to prebolus 45 mins before I eat breakfast otherwise my levels would shoot up to mid teens and stay there for a couple of hours and then plummet back down. That is with Fiasp, with NovoRapid I needed 75 mins prebolus time 😱 ! There are many people who would hypo during that time and most DSNs would say no more than 20 or 30 mins prebolus, but that is what I need. I now inject my bolus as soon as I wake up and before I get out of bed and then I have a routine of washing and dressing and checking in on the forum here whilst I drink my coffee before Libre shows me that my insulin is starting to kick in and I can eat my breakfast. There are also other people here on the forum who have to wait a similar length of time.... and if my levels are high when I wake up (10 or above) it will take longer still and I have to be patient.
I am not familiar with pumping as I am on MDI but I am sure that there are plenty of people who can give you pointers about that.
Would you like to tell us some of the issues which cause you difficulty? I appreciate that may make you cry from what you say but maybe we can turn them from ears of frustration to tears of joy by helping you crack the problem.
Have you ever had a DAFNE course or whatever your local equivalent is? That can be really good for helping resolve problems too.
For instance I need to prebolus 45 mins before I eat breakfast otherwise my levels would shoot up to mid teens and stay there for a couple of hours and then plummet back down. That is with Fiasp, with NovoRapid I needed 75 mins prebolus time 😱 ! There are many people who would hypo during that time and most DSNs would say no more than 20 or 30 mins prebolus, but that is what I need. I now inject my bolus as soon as I wake up and before I get out of bed and then I have a routine of washing and dressing and checking in on the forum here whilst I drink my coffee before Libre shows me that my insulin is starting to kick in and I can eat my breakfast. There are also other people here on the forum who have to wait a similar length of time.... and if my levels are high when I wake up (10 or above) it will take longer still and I have to be patient.
I am not familiar with pumping as I am on MDI but I am sure that there are plenty of people who can give you pointers about that.
Would you like to tell us some of the issues which cause you difficulty? I appreciate that may make you cry from what you say but maybe we can turn them from ears of frustration to tears of joy by helping you crack the problem.
Have you ever had a DAFNE course or whatever your local equivalent is? That can be really good for helping resolve problems too.
Thank you so much for telling me what you do and I’m going to try having my insulin 20 minutes before I eat and see how that works for me, I had given up trying anything different because I‘ve developed a feeling of nothing works. I did DAFNE several years ago and have put it into practice every day since. My biggest issue is going really high (over 14) after lunch ( we eat wholemeal, veg, salad etc.) every day I’ve increased my basal by 400% and bolus by 150% but it still happens and then drops rapidly after 4 hours then I have to eat to stabilise again. My clinic advise putting up my insulin but it just causes a hypo that can last over an hour later in the day and I have had to eat masses of sugar to get over it, which causes more instability. It’s a daily cycle that the clinic literally shrug their shoulders about and I now losing my sight. The Dieticians assessment is that I’m knowledgable about foods and carb counting and there’s no point going though another assessment with them. I could go on but this is already relieving some pressure, thank you.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome to the forum @Dengel
Sorry that you have been struggling with managing your diabetes, but very pleased that you have found the forum. I know that I have learnt lots of strategies that have helped from others on here, so I hope that you it as useful.
Looking at you latest post you mention that to deal with a spike after your meals you raised both your basal and bolus insulin and then hypoed 4 hours later. To deal with issues around meals it is best to focus on the bolus insulin, and leave the basal alone as it is there for a different purpose.
Your basal insulin is there to deal with the glucose that your liver dribbles out throughout the day in the background. Have you tried doing a fasting test bit by bit to cover the 24 hour period to find out if your basal insulin is correct. I know I was advised to get this sorted first and then to tackle bolus ratios.
As @rebrascora says many on here find it useful to bolus a while before they eat. My pre bolus time varies through the day (and I don’t always manage to eg when eating out) . I have worked out what it needs to be by trial and improvement. Having the Libre helped me with this as I could observe the impact each time and then adjust as necessary.
The other thing that the Libre helped me with was to identify the impact of different size meals and portion sizes. I realised that for me if I had bigger meals I needed to increase my bolus above the usual amount shown by my ratio, in order to avoid big spikes. I chose to reduce my meal portions and now work to a target (which I flex around as necessary) of a max number of carbs at each meal.
It is great that you are looking to improve your management. Just work on things step by step.
Keep the questions coming and we will offer suggestions. Loads of experience to tap into on here.
Sorry that you have been struggling with managing your diabetes, but very pleased that you have found the forum. I know that I have learnt lots of strategies that have helped from others on here, so I hope that you it as useful.
Looking at you latest post you mention that to deal with a spike after your meals you raised both your basal and bolus insulin and then hypoed 4 hours later. To deal with issues around meals it is best to focus on the bolus insulin, and leave the basal alone as it is there for a different purpose.
Your basal insulin is there to deal with the glucose that your liver dribbles out throughout the day in the background. Have you tried doing a fasting test bit by bit to cover the 24 hour period to find out if your basal insulin is correct. I know I was advised to get this sorted first and then to tackle bolus ratios.
As @rebrascora says many on here find it useful to bolus a while before they eat. My pre bolus time varies through the day (and I don’t always manage to eg when eating out) . I have worked out what it needs to be by trial and improvement. Having the Libre helped me with this as I could observe the impact each time and then adjust as necessary.
The other thing that the Libre helped me with was to identify the impact of different size meals and portion sizes. I realised that for me if I had bigger meals I needed to increase my bolus above the usual amount shown by my ratio, in order to avoid big spikes. I chose to reduce my meal portions and now work to a target (which I flex around as necessary) of a max number of carbs at each meal.
It is great that you are looking to improve your management. Just work on things step by step.
Keep the questions coming and we will offer suggestions. Loads of experience to tap into on here.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Prebolus timing is key to preventing spikes if you are coming back down to normal levels again. Increasing the insulin just causes hypos later as there is too much insulin for the carbs you ate.
Those are huge increases in basal and bolus you mention and whilst I appreciate that they will only be for short periods with a pump they are clearly delivering far too much insulin if you are battling bad lows most of the afternoon. That is just crazy!
How long do you currently prebolus?
Fluctuating levels are horrid and I am so sorry to hear it is affecting your sight. I really hope that we can help you improve the situation, especially with such a simple fix.
I would recommend you dial back your insulin to whatever used to be normal for you before you try prebolusing otherwise you will still hypo. We recommend that people increase the prebolus time by just 5 mins each day until you find the sweet spot timing for your body. So if you currently don't prebolus at all, then maybe start at 5 or possibly 10 mins and take it from there over the next few days. I just keep scanning with my Libre until I see my levels start to come down rather than actually keep track of the time. I log on my Libre reader when I take the bolus injection and when I eat the food so I can look back through my logs and it is remarkably consistent timing if I start in range. If I am above range, I need a bit longer and if I am in the 4s I will need a bit less time and I usually start eating when I am 6s or high 5s (if I have started higher) and the numbers are starting to decrease as that indicates the insulin is starting to hit my blood stream. I have quite a fast digestive system but slow to absorb insulin so I know that even starting to eat at mid/low 5s I still have time for the carbs to digest and balance the insulin release.... Occasionally I get distracted and leave it too long and need a JB in advance of my meal to slow the drop, but mostly I am into a routine with it now.
I usually just need 20 mins at other times of day but at breakfast I need a lot longer to prevent that spike and then plummet.
It may take several days of experiments to get the timing and bolus ratio right if you have been having problems like this for a while but the Libre should help to show you when you are making progress. If you want to post your Libre graphs of the problem we can take a look and perhaps fine tune suggestions.
Those are huge increases in basal and bolus you mention and whilst I appreciate that they will only be for short periods with a pump they are clearly delivering far too much insulin if you are battling bad lows most of the afternoon. That is just crazy!
How long do you currently prebolus?
Fluctuating levels are horrid and I am so sorry to hear it is affecting your sight. I really hope that we can help you improve the situation, especially with such a simple fix.
I would recommend you dial back your insulin to whatever used to be normal for you before you try prebolusing otherwise you will still hypo. We recommend that people increase the prebolus time by just 5 mins each day until you find the sweet spot timing for your body. So if you currently don't prebolus at all, then maybe start at 5 or possibly 10 mins and take it from there over the next few days. I just keep scanning with my Libre until I see my levels start to come down rather than actually keep track of the time. I log on my Libre reader when I take the bolus injection and when I eat the food so I can look back through my logs and it is remarkably consistent timing if I start in range. If I am above range, I need a bit longer and if I am in the 4s I will need a bit less time and I usually start eating when I am 6s or high 5s (if I have started higher) and the numbers are starting to decrease as that indicates the insulin is starting to hit my blood stream. I have quite a fast digestive system but slow to absorb insulin so I know that even starting to eat at mid/low 5s I still have time for the carbs to digest and balance the insulin release.... Occasionally I get distracted and leave it too long and need a JB in advance of my meal to slow the drop, but mostly I am into a routine with it now.
I usually just need 20 mins at other times of day but at breakfast I need a lot longer to prevent that spike and then plummet.
It may take several days of experiments to get the timing and bolus ratio right if you have been having problems like this for a while but the Libre should help to show you when you are making progress. If you want to post your Libre graphs of the problem we can take a look and perhaps fine tune suggestions.
This is todays which has actually been good, I have no idea as to why I was higher in the night as this is usually my best in range time needing 0.30 units until 2 am and 0.35 until 5am. I bolus‘ed 40 mins before lunch and stayed below 14 which is a breakthrough then BS kicked up to 11 before my evening meal. I bolus’ed 20 mins before evening meal but then dropped to under 5, I’m trying to stay within 5 and 8 to get some stability. I will cut down the time for tomorrow evenings meal and cut down my basal through the afternoons.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Well that doesn't look too bad at all apart from the high overnight. Is that a regular feature that might need a basal tweak or was it a bit of "pizza effect" from your evening meal? ie a higher fat or protein meal that delayed the release of glucose.... pizza is well known to do this but a creamy pasta sauce or fish and chips and mushy peas or a big chunk of meat like a steak/barbeque can release late at night and cause a spike. Did you correct it or did it come down on it's own?
That early evening plateau tonight just above 10, is that before you had tea or as a result of an early tea. You are obviously on your way down from it now. Hope it levels out soon as that looks like quite a steep descent. 😳
That early evening plateau tonight just above 10, is that before you had tea or as a result of an early tea. You are obviously on your way down from it now. Hope it levels out soon as that looks like quite a steep descent. 😳
one correction would normally suffice but I did two during the night And wouldn’t normally need to do any so perhaps it was the meal which was home made vegetable Korma and small Nan, no rice or mango chutney as they are a no, no for me. I was excessively hungry last night and had to drink several glasses of water to stem the potential to eat too much. I can’t eat lots of carb, so things like pizza, pasta, rice are off my menu as it makes my difficult diabetes worse. We ate at 6.30 which is our normal time but I didn’t crash before the meal as I didn‘t have to correct after a huge spike after lunch. I will see how tomorrow goes and experiment with timinns.
- Status