New T1D Diagnosis, very far from home, with a very rough start

Thinking more @SallyLinsdell , I’m also confused about why you’ve been given Toujeo. This is a concentrated version of Lantus basically and usually given to people with insulin resistance (Type 2s and a few Type 1s). You’re not overweight so I can’t understand why you’re being given Type 2/insulin resistance meds as a Type 1.

The insulins recommended for initial use for Type 1s here are Novorapid and Levemir. It’s like the people you’ve seen are only used to treating Type 2s not Type 1s.
 
Hi and welcome from me too.

So sorry to hear you have had such a traumatic time with Dengue fever and then a Type 1 diabetes diagnosis. It must have been scary particularly losing your sight and then that large Lantus dose for someone your size. You are lucky it didn't kill you! How is your sight now? Have you had any retinal screening as that is important when you are diabetic.

Can you just clarify..... Are you taking the Toujeo and if so when and how much?

It may be that those large Lantus doses have taken the strain off your remaining insulin producing beta cells and they are now feeling refreshed and over enthusiastic. I would not put too much store on Libre showing hypos. You say that you double checked them with a finger prick and they were low, but how low? Libre has a tendency to over egg highs and lows, particularly if you are rising or falling fast and for many of us it reads lower than a finger prick at low levels and higher at high levels. You sound like you are pretty fit and a healthy weight so I wonder if your own insulin is bringing you down to normal levels but you are over reacting to seeing your levels dropping which is totally understandable considering the experience you had with that large dose of Lantus and intervening with a hypo treatment that you perhaps don't really need, pushing your levels up and triggering your own insulin to bring you back down again.
I think it is important to mention that a hypo treatment should be 15g of fast acting glucose (not a granola bar) but 4-5 glucose/dextrose tablets or 3 jelly babies (not sure you can get those in Bali) or a small carton of orange juice. If you are using sweets then it needs to be something which doesn't contain fat as that slows the release of glucose and don't use fruit as the fibre slows it down. The protocol is to test with a finger prick if Libre/CGM says you are hypo to confirm, (unless you feel obviously hypo), then treat with your 15g fast acting carbs and wait 15 mins and then check again with a finger prick. Libre will invariably show your levels continuing to drop 15 mins after treatment because of the algorithm it used to convert interstitial fluid glucose to blood glucose, so ignore the Libre at this point and rely on your BG meter. If it shows you above 4 then you can consider having a few slower acting carbs like a digestive biscuit to stabilize things but if you are not on insulin at all then you will not need that. The key thing is not to let Libre panic you into treating a hypo that isn't actually hypo or over treating a genuine hypo as this can trigger the rollercoaster you are seeing in that graph, particularly if you have some endogenous insulin production. I can totally understand you panicking after the experience you have had, but you have to learn to be quite disciplined with treating hypos and be a little sceptical of Libre. For me it usually reads about 1mmol lower than BG so a 3.4 on Libre is usually about 4.4 which is a perfectly normal number for BG if you are not taking insulin but a bit close to the bone if you are on insulin, so if I get a finger prick of 4.4 I might have 1 jelly baby which is 5g carbs which should lift my levels about 1.5mmols. It is generally suggested when you first start on insulin that 10g carbs will raise your levels by about 3mmols and 1 unit of fast acting insulin will drop you by 3mmols. These are just guidelines and there will be variation from one person to another and the more slim and fit you are, usually the more sensitive to insulin you will be.

Anyway, this thread has probably moved on quite a bit whilst I have been typing but hope some of my thoughts are helpful. Personally I too would ditch the Metformin, particularly as you are slim and fit and having these hypos. It has quite a long half life so will take days or even over a week to be fully out of your system.
Wow @rebrascora, I can't thank you enough for such a detailed response. So so helpful and amazing take aways particularly with treating the hypos.

My vision now is back to normal, and I was able take a retinography screening during my trip to Australia and all was good thankfully!

I have not taken any Toujeo yet, the Dr had instructed to keep a close eye on my fasting glucose numbers and when I start waking up in consistency by 9/10/11s to start with 2 units.

I think my homework after all the advice in this thread, I will ditch the Metformin, and increase my carb intake and see how things improve on this crazy little journey! Thank you again!
 
Thinking more @SallyLinsdell , I’m also confused about why you’ve been given Toujeo. This is a concentrated version of Lantus basically and usually given to people with insulin resistance (Type 2s and a few Type 1s). You’re not overweight so I can’t understand why you’re being given Type 2/insulin resistance meds as a Type 1.

The insulins recommended for initial use for Type 1s here are Novorapid and Levemir. It’s like the people you’ve seen are only used to treating Type 2s not Type 1s.
Oh interesting! I didn't know that about Toujeo. My instructions were to start 2 units when I start consistently waking up in the 9/10/11 range. However not there yet, sleep is the most stable I am!

To share another story; an Indonesian friend told me his uncle has had diabetes for 15 years, to which I replied 'oh which type?' and they shocked me with the line 'I asked him but he said he doesn't know' which shows you the level of diabetes awareness and education i've been working with out here! However the endocrinologist in Aus came with some super raving reviews, and is a T1D himself. I have also reached out to him about my relentless yoyo's, but waiting to hear back.
 
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I did think Toujeo probably wasn't the best choice of basal but it is one of the cheaper insulins. The advice about starting on a couple of units when fasting levels start becoming consistently above range is quite sensible and using a small dose of NovoRapid with meals, but you will need to find a balance with the carbs in those meals and the insulin they need. It is common for Drs to recommend 1u:10g carbs as a starting point, but some people are more sensitive to insulin and may need a much weaker ratio 1:15 or 1:20. So start with less and err on the side of caution and then you can always increase it if/when you need to. It is important to know that NovoRapid has an activity time of 4-5 hours. Most of it's activity is in the first couple of hours after injecting and if you exercise during that time, it will increase it's effectiveness, so generally we reduce our meal time insulin dose if we intend to exercise afterwards, or we top up with carbs whilst we are exercising.

What is your low alarm on the Libre set at? The factory setting is usually 3.9 but I would suggest you set it higher. I set mine at 4.5 but 5.0 might be better for you since you have had such an awful experience with hypos. I am not suggesting you take a full hypo treatment when the low alarm goes off, but maybe just a small portion. It is important to understand that we are all different but with mine set at 4.5 if I am dropping very fast when the alarm goes off ie a vertical downward arrow, then I have 2 jelly babies and that will usually turn the drop around and level me out at about 6 in half an hour. If it is just a sloping downward arrow between 4.2 and 4.5 then a single jelly baby (5g carbs) is enough. If I get an horizontal arrow when the alarm goes off I generally just keep a close eye on things. If I know I have food in my system which is going to digest and bring me back up, then I won't have anything, if I know that I am going to be exercising or I am exercising I will have a jelly baby and see how that goes. I find it amazing how powerful 1 jelly baby can be in raising my levels and I have to be very disciplined with them otherwise I will end up high and need more insulin to bring me down and risk another potential hypo. I see my jelly babies and insulin a bit like the accelerator and brake on a car. If I am going too fast I need to slow down but that doesn't mean I need to do an emergency stop, just gently slow down, but if I am going really fast then I need to be a bit firmer on the brake. Ideally I learn to mostly get my speed right without needing too much brake (jelly babies) but it comes with experience and you can't get good at driving without practicing. Not sure if that makes sense to you but it is about balancing your insulin for the food you eat and the exercise you do plus the other 40 factors which impact BG levels like alcohol and hormones and ambient temperature and how well you slept and illness and season and time of the day even as we tend to usually be less sensitive to insulin the morning compared to the evening.

The timing of when you inject your NovoRapid is also important because we are injecting into subcutaneous fat and it has to get from there into the blood stream whereas the pancreas releases it straight into the blood stream. This means that we usually have to inject it a little bit in advance of when we eat. This is called prebolusing. The patient information leaflet probably suggests something like injecting 10 or 15 mins before you eat but often we need more than that before breakfast than we do in the evening. If you don't inject far enough in advance, your levels will spike high because the glucose gets into the blood stream before the insulin and then it may be that your own pancreas will kick in and release some as well as the insulin you have injected, because your pancreas responds to the elevated BG levels, so you might have injected the right amount but too late and then your pancreas adds in some extra which is then too much. If you wait too long after injecting before you eat, you can end up hypo as the insulin arrives in the blood stream before the glucose from your food. I used to need more than an hour at breakfast time between injecting and eating breakfast but at other times of the day, I just needed 20-30mins. You have to carefully experiment to find the timing which is right for you at different times of day. I wonder if it might be helpful to start your insulin with just one meal, perhaps breakfast and have the same breakfast every morning and work on getting the dose and timing right, since your own insulin production seems to be managing reasonably well at the moment, so there is no huge pressure to use insulin for all 3 at the moment.

I appreciate that I am giving you a huge amount of info all at once and it may seem very complicated, but just like learning how to drive, it gradually becomes second nature and you do most of it on autopilot, like looking in the mirror and indicating and changing gear and wiping the windscreen etc. When you first learned to drive you had to think about every single process, but gradually your body/brain just develop a muscle memory for most of those things and just do them automatically in the background. Break it down into small sections like one meal at a time, experiment carefully and always err on the side of caution ie less insulin rather than more, and find what works for your body for that meal at that time of day. When you have a routine that is working reasonable well, start with another little step, gradually building up your repertoire of meal doses and timings and most importantly your confidence.
 
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I did think Toujeo probably wasn't the best choice of basal but it is one of the cheaper insulins. The advice about starting on a couple of units when fasting levels start becoming consistently above range is quite sensible and using a small dose of NovoRapid with meals, but you will need to find a balance with the carbs in those meals and the insulin they need. It is common for Drs to recommend 1u:10g carbs as a starting point, but some people are more sensitive to insulin and may need a much weaker ratio 1:15 or 1:20. So start with less and err on the side of caution and then you can always increase it if/when you need to. It is important to know that NovoRapid has an activity time of 4-5 hours. Most of it's activity is in the first couple of hours after injecting and if you exercise during that time, it will increase it's effectiveness, so generally we reduce our meal time insulin dose if we intend to exercise afterwards, or we top up with carbs whilst we are exercising.

What is your low alarm on the Libre set at? The factory setting is usually 3.9 but I would suggest you set it higher. I set mine at 4.5 but 5.0 might be better for you since you have had such an awful experience with hypos. I am not suggesting you take a full hypo treatment when the low alarm goes off, but maybe just a small portion. It is important to understand that we are all different but with mine set at 4.5 if I am dropping very fast when the alarm goes off ie a vertical downward arrow, then I have 2 jelly babies and that will usually turn the drop around and level me out at about 6 in half an hour. If it is just a sloping downward arrow between 4.2 and 4.5 then a single jelly baby (5g carbs) is enough. If I get an horizontal arrow when the alarm goes off I generally just keep a close eye on things. If I know I have food in my system which is going to digest and bring me back up, then I won't have anything, if I know that I am going to be exercising or I am exercising I will have a jelly baby and see how that goes. I find it amazing how powerful 1 jelly baby can be in raising my levels and I have to be very disciplined with them otherwise I will end up high and need more insulin to bring me down and risk another potential hypo. I see my jelly babies and insulin a bit like the accelerator and brake on a car. If I am going too fast I need to slow down but that doesn't mean I need to do an emergency stop, just gently slow down, but if I am going really fast then I need to be a bit firmer on the brake. Ideally I learn to mostly get my speed right without needing too much brake (jelly babies) but it comes with experience and you can't get good at driving without practicing. Not sure if that makes sense to you but it is about balancing your insulin for the food you eat and the exercise you do plus the other 40 factors which impact BG levels like alcohol and hormones and ambient temperature and how well you slept and illness and season and time of the day even as we tend to usually be less sensitive to insulin the morning compared to the evening.

The timing of when you inject your NovoRapid is also important because we are injecting into subcutaneous fat and it has to get from there into the blood stream whereas the pancreas releases it straight into the blood stream. This means that we usually have to inject it a little bit in advance of when we eat. This is called prebolusing. The patient information leaflet probably suggests something like injecting 10 or 15 mins before you eat but often we need more than that before breakfast than we do in the evening. If you don't inject far enough in advance, your levels will spike high because the glucose gets into the blood stream before the insulin and then it may be that your own pancreas will kick in and release some as well as the insulin you have injected, because your pancreas responds to the elevated BG levels, so you might have injected the right amount but too late and then your pancreas adds in some extra which is then too much. If you wait too long after injecting before you eat, you can end up hypo as the insulin arrives in the blood stream before the glucose from your food. I used to need more than an hour at breakfast time between injecting and eating breakfast but at other times of the day, I just needed 20-30mins. You have to carefully experiment to find the timing which is right for you at different times of day. I wonder if it might be helpful to start your insulin with just one meal, perhaps breakfast and have the same breakfast every morning and work on getting the dose and timing right, since your own insulin production seems to be managing reasonably well at the moment, so there is no huge pressure to use insulin for all 3 at the moment.

I appreciate that I am giving you a huge amount of info all at once and it may seem very complicated, but just like learning how to drive, it gradually becomes second nature and you do most of it on autopilot, like looking in the mirror and indicating and changing gear and wiping the windscreen etc. When you first learned to drive you had to think about every single process, but gradually your body/brain just develop a muscle memory for most of those things and just do them automatically in the background. Break it down into small sections like one meal at a time, experiment carefully and always err on the side of caution ie less insulin rather than more, and find what works for your body for that meal at that time of day. When you have a routine that is working reasonable well, start with another little step, gradually building up your repertoire of meal doses and timings and most importantly your confidence.
This is absolutely priceless @rebrascora, your analogy helps make such much sense of it all and I will take all of this on board along with the words of everyone else who replied in this thread. I really didn't expect it, and so grateful and overwhelmed at the support! It's relieved a lot of anxiety.

I've adjusted my low alarm to 4.4, found myself some jelly beans in Bali and learnt now to not always rely solely on the Libre2 readings before I grab that snack and send myself into a yoyo.

Next step, practice small dosing with breakfast 🙂 confidence, confidence, confidence! I can't thank you enough again Barbara x
 
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This is absolutely priceless @rebrascora, your analogy helps make such much sense of it all and I will take all of this on board along with the words of everyone else who replied in this thread. I really didn't expect it, and so grateful and overwhelmed at the support! It's relieved a lot of anxiety.

I've adjusted my low alarm to 4.4, found myself some jelly beans in Bali and learnt now to not always rely solely on the Libre2 readings before I grab that snack and send myself into a yoyo.

Next step, practice small dosing with breakfast 🙂 confidence, confidence, confidence! I can't thank you enough again Barbara x
It's great that you're getting benefit from the last 25 posts @SallyLindsell. If I may, one observation about your low setting of 4.4.

The accuracy of both glucose meters from blood on strips and CGMs is not as good as the extra figure after the decimal point infers. Permissible tolerances are +/- 15%, so in a well functioning CGM 4.4 could be within tolerance if it showed 5.0 or 3.7 mmol/L . The 5 is obviously fine and 3.7 is dreadfully close to a medically defined hypo status. Also when near the boundaries of 4 or 10, CGMs often are found to be inaccurate and we generally caution anyone to confirm low readings, in particular, with a finger prick.

With those 2 observations in mind, I feel one's CGM should not be a bit of tech that sends you Alarms, but better it tells you about the trend of your BG behaviour and "Alerts" you when you are heading towards a low; rather than telling you that you are already low. When I had Libre 2 I had my low setting at the top limit of Libre, ie 5.6mmol/L (and now I have the Dexcom G7 I frequently use a low Alert of around 6.5) (Dexcom G7 has a top limit of 8.6mmol/L).

Slightly interestingly, Libre uses the word Alarms and Dexcom call these thresholds Alerts; also my G7 has an Alert to tell me audibly when my BG is falling and I can activate that falling Alert for gentle, moderate or severe falling trend.

So, and I realise it's early days and you are wading in suggestions etc, do consider lifting your low Alarm on Libre 2 to 5.6 to make it an Alert rather than an Alarm. For CGM users being In Range is between 4 and 10 and 70% Time In Range (TIR) is considered terrific. These are Internationally agreed limits, wholly accepted in UK and perhaps rather than trying to stay closer to 4, consider lifting your aspirations to stay somewhere mid range and thus happily away from lows.

Because CGMs are a relatively new method of knowing what one's BG is doing, I think there is a legacy or conditioning that says "four is the floor" (and thus any finger prick result above that is OK); that those folk fortunate enough to have good hypo awareness signals will recognise their approaching hypo and treat accordingly; and that going hypo regularly is normal (the Diabetes Specialist Nurse (DSN) leading my local Diabetes course quite blatantly said that to the 10 students and quite blatantly insisted that since the course did not include any training about CGM we should not get bogged down in talking about it during the course). But now we have CGM, there is every possibility that we can foresee many hypos and prevent them. I'm not saying we can prevent any hypos - all sorts of things does mean they will occur; but hypos are medically bad for anyone, both short term or in the longer term and hypo avoidance is important.

Finally, since you are self-funding your CGM, there are alternatives. Here in UK the Dexcom One+ is similar in performance a d cost per month to Libre 2. The Libre 3 is not widely available here, to date, but is more expensive and comparable to Dexcom G6 and G7. These might be options worth looking into from Australia (although my understanding is that the cost of living in Australia or NZ is no longer as kind as it was a few years ago).

As you said:
confidence, confidence, confidence!
It does get easier.
 
I agree with @Proud to be erratic , @SallyLinsdell I’d set my Low Alarm higher than 4.4. I have the Dexcom G7 now like Roland (above) but when I had the Libre, I set it at 5.6. That gave me time to look, assess (which way the arrow was going, whether to fingerprick, what I was about to do, etc) and react if necessary. I’d do this anyway, but it’s particularly important if you’re prone to and/or worried about hypos. It gives you more control and more confidence.
 
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