# Newbie



## The robin (Jan 9, 2022)

Hi, my name is Judy and I have recently had my pancreas removed ,so I am now a diabetic type 3c.


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## Christy (Jan 9, 2022)

Welcome Judy


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## The robin (Jan 9, 2022)

Thankyou for the welcome. 
It’s all very much a learning curve for me at the moment. I’m insulin dependent and I’m on the tresiba and nova rapid pens. I also have to take creon with every meal/ snack.
I’ve been on the freestyle libre 2 sensor for a couple of months,I’ve had a couple of faulty ones but overall I’m happy with it.


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## Christy (Jan 9, 2022)

Sorry I can't provide you with any advice but this is a friendly forum and someone will be along soon who can help you.


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## Lily123 (Jan 9, 2022)

Welcome to the forum @The robin


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## Proud to be erratic (Jan 10, 2022)

Hi Judy @The robin ,
I'm T3c after Whipples Procedure which resulted in a total pancreatectomy in Feb 2020, and so remove a cancerous tumour. I'm the wrong side of 70.

When was your panc removed? How are you doing generally? There's a lot to take on board - do you have access to a hospital specialist team for diabetes and Endocrinology, or a dietician; presumably you are still under the watchful eyes of your surgical team?

Not surprisingly, even though the Surgeon had warned me that there was a possibility my pancreas might be removed, it was still a big shock, with a steep learning curve. Has anyone advised you of books that might help? I got "Think Like a Pancreas" by Gary Schneider which I still find really helpful. He unashamedly concentrates on insulin dependant diabetics, but doesn't specifically mention T3c. We are a very small group of people and while some of our challenges are as for T1s, our missing panc generally make our diabetes very brittle, with very big BG swings and rapid falls in particular. Do you carry a hypo response pack with you at all times?

I'm happy to answer any questions you might have, as best I'm able. Feel free to ask, no question is stupid and this forum is brilliant at responding to people; I've learnt a huge amount from here.

PS: apologies I wrote this yesterday but looks as though I didn't post my reply!!


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## Cherrelle DUK (Jan 10, 2022)

Hi The robin, welcome to the forum.

So sorry to hear about your health challenges at the moment, sounds like a lot to deal with.

It sounds as though you have things under control but do let us know if you have any questions or just want to share concerns.


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## The robin (Jan 10, 2022)

Proud to be erratic said:


> Hi Judy @The robin ,
> I'm T3c after Whipples Procedure which resulted in a total pancreatectomy in Feb 2020, and so remove a cancerous tumour. I'm the wrong side of 70.
> 
> When was your panc removed? How are you doing generally? There's a lot to take on board - do you have access to a hospital specialist team for diabetes and Endocrinology, or a dietician; presumably you are still under the watchful eyes of your surgical team?
> ...


Hi,
I had a distal pancreatectomy in 2013,which resulted in loosing my spleen. Then had total pancreatectomy September 2021 due to a cluster of cysts which were on the verge of turning cancerous.
Im quite a positive person but must admit this has been very difficult at times. Fatigue and erratic levels the main issues.
I am in touch with my diabetic dietician on a weekly basis,she is very supportive.
I am still under consultants care and unfortunately having a problem with 2 lumps situated at the rooftop of my wound. He’s not sure wether it’s a hernia or a blockage,monitoring it for now.
My bloods are have to be re-done this week as they have come back abnormal.
No, I don’t carry a hypo response pack, I have told my nurse that my husband wants training for the glucagon injection,that will hopefully get sorted soon.
My husband and family are very supportive and luckily for me my husband reads up on anything relating to my condition.
Thankyou for your kind words……. I may well ask stupid questions


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## Proud to be erratic (Jan 11, 2022)

The robin said:


> Hi,
> I had a distal pancreatectomy in 2013,which resulted in loosing my spleen. Then had total pancreatectomy September 2021 due to a cluster of cysts which were on the verge of turning cancerous.
> Im quite a positive person but must admit this has been very difficult at times. Fatigue and erratic levels the main issues.
> I am in touch with my diabetic dietician on a weekly basis,she is very supportive.
> ...


Good to hear from you Judy, you have been through the mill. 

Fatigue and erratic BG levels don't surprise me: you've been put through a huge intrusion and your body has not only the physical recovery to cope with, but has the trauma of the huge interruption to your digestive system and general metabolic processes. To try and put that in some context: even if you were an Olympic athlete in your prime you would need a few months before you could resume training and many months more to regain that prime. I don't say this to depress you - just to help you accept its going to be a long haul and go with that. Of the many factors that affect BG, stress is in some ways one of the worst - because you can't quantify it; so if at all possible, somehow, try to relax and move forward one day ar a time. Easy preached and most difficult to practice - I know.  Meanwhile perhaps there are things we can help you with....  

I sympathise with your post-op probs; I overdid things and have a hernia, but opted to do nothing during 2021. because of other hassles, particularly very unstable BG. 

Concerning hypo response pack: the Glucagon is important, but of course this is more for whoever is with you, if you are unconscious! There are instructions in the box and I've seen a video on You Tube; I'll search for it this evening.

By response, I really meant things like Dextrose tabs or Jelly Babies, etc and some way of testing, while hypo but still conscious; eating or sucking JBs, or a high carb drink, eg Lucozade, should give you a recovery. No need to panic at 3.9 - just pause, respond and manage it. I have records showing I got down to 2.3, but at that point it's pretty horrible. 

My underlying point is have your personal hypo response means everywhere: in all rooms, in the car and whenever out, even in the garden. Have a means of assessing your BG; first call is your Libre, so have your phone or reader with you at all, times; but if your sensor seems flaky (this happens and you will develop a sense of when the sensor is adrift from your actual BG by more than the declared time lag) keep your finger pricker handy. I'll write separately a bit more about sensor behaviour.

I have JBs in every room, every outdoor coat pocket, both our cars, along with a travel pack; as well as the JBs that travel pack includes a modest selection of follow-up food, such as plain cereal bars, chocolate in different forms and providing a range of high and low GI foods of different sizes - but each with its own identifiable carb content. The high GI response needs consolidating, after recovery and some stability,  with lower GI food that endures for the rest of the bolus period. How much and what type of follow-up I've learnt by trial and error. We are all different and you'll develop your own sense of what works for you; but it should help you just knowing that taking some JBs may not be sufficient for an hour or two later.

If I'm going hypo the finest response for me is stop moving, activity of any sort pushes me further down. I start taking on high Glycaemic Index (GI) carbs such as JBs or Lucozade (or similar) and wait 15 mins, then test; if needed repeat. How many carbs depends slightly; if I'm just dipping below 4 and the fall is gentle, then 10gm, 2x JBs. If I'm already at 3.5 or lower then at least 15gm, maybe 20gm.  So I trust my sensor (usually) and DON'T initially finger prick; the delay with hand washing and using that meter is for me less important than trying to stop or slow the fall. I'll test after the 1st snack, provided my meter is close by and I can get a clean finger with minimal hassle; in the garden, for example, that isn't realistic for me. By responding quickly I do risk over-reacting and getting the Yo-Yo rebounds; which does sometimes happen, despite trying to prevent that. But usually after I've been well below 4 for a long period and ending up taking 15+ gms of carbs repeatedly every 15 mins or so; the carbs eventually work and duly cause the big rebound. If you get rebounds just take them in your stride, so to speak, and move on; you are not alone (!) and you can't go back in time to respond differently! When I am hypo I don't necessarily think clearly or behave logically; the hypo makes me want to snack and its easy to overdo that.

Potential hypos hit me at the most unexpected of times and I either deflect them or reduce their severity by responding very quickly with JBs etc. Despite this I still get 3 or 4 hypos a week and deflect at least double that number. I now have my Libre 2 "overseen" by a Continuous Glucose Monitor (CGM) app called Diabox. This gives me a huge improvement in my monitoring capacity, with better alarms than Libre 2 and visibility of not only when I'm falling but exactly how fast. So the hypos I do still get are much less severe than before. 

Once, my BG fell from 9.9 to 4.1 in 10 mins; that is ridiculously fast. It was only because I somehow knew something was wrong and started stuffing JBs ahead of being hypo, that I managed to catch that hypo before it became deep and serious. 

My understanding is that this is inevitable after a total pancreatectomy! Without the hormones and messengers that were unique to my pancreas and which assist in the normal regulation and balancing of glucose and insulin, we have to do all of that balancing ourselves - manually, until today's technology will assist or even overtake. I am still a novice in this level of management.

And, of course that manual self-assistance includes taking Creon to ensure digestion of the incoming food. One of my post op problems has been achieving full digestion; my bowel activity has made it very clear for the last 23 months that full digestion wasn't occurring and the consequent malabsorption makes the process of carb counting and bolus dosing a guessing game. I've been under a gastroenteroloogist for nearly 12 months and it was only Dec 2021 that I was finally prescribed a special antibiotic, which needed high level approval from somewhere, before I could take it. It deals with a bacterial overgrowth that can occur and although I'm a lot better just now, however, I may need to take this abx periodically; wait and see process for now.

So Diabetes is: complicated, confusing and contradictory. At first I also found it frightening. But before I retired, a particular mantra provided at work over nearly 4 decades was: Knowledge Dispels Fear. I've made it my business to try and understand what is going on and why; there are still huge holes in that knowledge and I'm still struggling with daily management. But I've done my apprenticeship (carb counting, injecting, adjusting insulins and dosing ratios), been "fire-fighting" for most of the last 2 years (reacting to hypos in particular) and for 2022 I'm now trying to move into a better management regime by learning what works and doesn't work for me. Thus anticipating and making earlier, but gentler, responses and adjustments.

Sorry this is lengthy. Do, please, ask any question as necessary. No question is stupid. I'm delighted your husband and family are supportive; doing this on my own would have been extremely challenging and my family have given me strength as well as a reason for learning and managing. Stay strong.


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## The robin (Jan 11, 2022)

Thankyou for that ( not lengthy at all) speaking to someone who is in the same situation as me is really helping understand various aspects of it all.
I am 58 and in full time employment .I have accepted that when recovered I will be returning on much reduced hours,luckily my employer is extremely supportive. My consultant told me that after the op I would never be 100%, he said 85-90%,he has always been totally honest and upfront.
I am on permanent penicillin because I have no spleen,so immune system is very weak. I also had digestive problems,mainly lack of bowel movement ( too much info!)and I am on a procalcopride tablet,daily which does its job.
Another post op problem I am having is a recurring build up of pressure that often feels as if it is going to become painful but then releases……strange.
On hypo response pack,sorry I misunderstood,yes I have j/ babies/ dextor / full fat coke and snack bars etc in the car,bedroom,kitchen and take them with me wherever I go.
I have had quite a few 2.3-2.9 hypos,not nice at all. I can recognise the symptoms,foggy head,shakes,sweating etc. I tend to sleep a lot after I’ve had one, leaves me completely exhausted. Last Monday,I had 2 during the day and 1 in the middle of the night, no explanation as to why these happen. I will do what you suggested though to respond at 3.9. and test after 15 mins. I have my libre alarms set at 4 and 15,are yours similar?
I am a healthy eater and try to be very careful with what I eat but I have no idea how to count carbs or what the best amount to eat is. My nurse did say she will go over this with me in detail in the future but not to worry about it just yet. She doesn’t want to overload me with too much information.
I feel quite confident at changes my insulin doses as and when needed. It took me a while to realise that injecting insulin reaches its peak at 90mins, at first I thought it happened straight away,nobody told me it takes time.
It is very frustrating when I might have 2 really good days and be in range and the following day my GLs are all over the place when there hasn’t been in changes in activity/ food etc.
Thank you again.


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## soupdragon (Jan 11, 2022)

Hi @The robin and welcome to the forum.

I have just a small amount of pancreas left following pancreatitis and it can be quite a juggling act with Creon and blood glucose.

I have my Libre 2 low alarm set quite a bit higher than you so that I can react in plenty of time as I can drop quite quickly  at times. At the moment it's set at 5.6 during the day at work and a bit lower at night. That seems to work for me at the moment.

Wishing you all the best. It sounds as though you're doing really well but I know how tough things can be at times.

If you've any questions please feel free to ask


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## The robin (Jan 11, 2022)

soupdragon said:


> Hi @The robin and welcome to the forum.
> 
> I have just a small amount of pancreas left following pancreatitis and it can be quite a juggling act with Creon and blood glucose.
> 
> ...


Hi@soupdragon.
Thank you for welcoming me,I feel I have already learnt so much in the short period of time I’ve been on here.
I am considering changing my alarm level during the day so I can respond to lower Gls quicker .


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## Proud to be erratic (Jan 11, 2022)

The robin said:


> Thankyou for the welcome.
> It’s all very much a learning curve for me at the moment. I’m insulin dependent and I’m on the tresiba and nova rapid pens. I also have to take creon with every meal/ snack.
> I’ve been on the freestyle libre 2 sensor for a couple of months,I’ve had a couple of faulty ones but overall I’m happy with it.


Hi again Judy,

It was a huge learning curve for me also. I was started on Levermir 2x daily and NovaRapid 3x daily before meals. There was scant explanation about prebolus dosing, or carb counting. I was given a simple formula of so many units preferably before each meal and fixed units for basal. Initially I was recovering from surgery, adjusting mentally to my new lot and just drifting day to day. I then started chemo and even though that was ended early I was struggling while it was going on and in a chemo fog until Oct 2020. 

During those 8-9 months I had regular contact with a Diabetes Specialist Nurse (DSN) and her colleague dietician. The DSN was very supportive, helpful and old school - keep it simple. She adjusted my dosing formula from time to time from scrutiny of my photographed logbook and reassuring when it all seemed out of kilter. However, it transpired that while she told me my diabetes was difficult, in practice she didn't appreciate that T3c needed a lot more management than T1 and this nearly became a big problem. The diabetes dietician was not unhelpful, but simply didn't understand; luckily the cancercdietician kept me on her books and was very supportive.

My first Endocronologist was hopeless; I never met him, just had a phone consult which started with his question: "how did I come to realise that I had Type diabetes?" Not only had he not bothered to read my notes before starting the call, in retrospect I realise that his first report on me showed he had no understanding of the difficulties of having no pancreas. He described me T1, with no caveat.

This is a recurring theme which you will encounter. Most medical people simply have no awareness that there is such a thing as Type 3c diabetes, never mind realising it is much more complex than T1. At first this really irritated me, when reports described me as T1, not T3c; but I've mellowed slightly. It was pointed out that since T3c is barely known about in the general medical community, better to have medical records saying T1, if you end up unconscious in A&E, so you're given insulin rather than treated as T2 because T3 is "less". I tested this observation with a local Dr, not my practice, who gave me my 2nd Covid jab. She confirmed she'd never heard of T3c, didn't recognise my Libre sensor (?!) and asked if I was born without a pancreas.

During Oct 20 I came out my chemo fog, and realised I had to play an active part in managing my own diabetes. I read "Think Like a Pancreas" did an on-line Carb counting course (Bertie) and asked my DSN loads of questions. She subtly helped me change my Endocrinologist, who at least knew something about T3c Diabetes; alas despite promising to assist on something, he just went silent and for me a commitment needs to be honoured, or explained why not. But something good did come from that, thanks to my surgical team, who recognised that T3c needs very special support and since last October I'm now under the Oxford Centre for Diabetes, Endocrinology and Metabolism - even though I live in Bucks. Those 3 words, Diabetes, Endocrinology and Metabolism very succinctly encapsulate the complexity and extremes of T3c diabetes.

Anyway in Jan 2021 I was put on a list for being fitted with Libre 2 and got that a few weeks later. So I spent over 12 months just finger pricking and a little less without carb counting; I call that my apprenticeship.

So about Libre 2: I'm in absolutely no doubt that Libre 2 is a huge improvement on finger pricking and a meter. To not have something like that is like having a car with no fuel guage - just a stick to dip the fuel tank with! It isn't always reliable and this is regrettable; but once you've realised your Libre isn't behaving properly, Abbott do replace them. I'm on my 9th replacement in 10 months. My GP is pretty strict about only prescribing 1 every 2 weeks but I now have gathered 2 extra and so feel less vulnerable; and will fit a new one if I'm unhappy with how my current one is doing. Having said I'm in no doubt about the benefit, like all technology it's great, but when it doesn't work it really is *#¥*... ! I would be even happier if Libre 2 was more reliable.

I fit, but don't activate, my next sensor at least 3 days before it is due to end. I found from trial and error that my body needs 3 days to accept this intrusion and settle down. Hence early fitting. But, if I'm slightly anxious about my current sensor I will promptly fit the next one; so I might be wearing 2 sensors for over a week, if my concern proved to be ill-founded. But that reflects how important it is to me to have a working sensor. If I go away overnight a replacement sensor is part of my luggage; if I was flying all my DM "stuff" would be in my hand luggage - too important to be misplaced or lost in hold luggage.

One of the apparent "unreliability" problems is when Libre 2 doesn't match actual BG, even after allowing for the inherent time-lag between actual and interstitial values. Freestyle claim this as 2.4 minutes for Libre 2, it was nearer 15 mins for the original Libre I believe. But  my tests have left me feeling the lag was about 5 mins. If you are unclear about this there is a lot on this site, in these forums; just search. But be aware some people still refer to 15 mins, which is definitely wrong for Libre 2. Anyway, by the time your flash scan with your Libre reader or your phone has told you that you are at or close to the hypo zone ... your actual blood glucose got there 2.5 to 5 mins before and you are dealing with a developed low. Conversely if your flash scan gives you a reading below 4 you might already be recovering, and this can also be misleading. So it becomes confusing, by seeing conflicting numbers, just when you are feeling disorientated by the hypo; my advice is trust your finger prick more than Libre 2. Both have margins of error and if that error is within margin, but in the diverging direction for each ... the gap can look big! But Freestyle encourage you to test with finger pricking when both high or low. when in range, ie 4-10 I just go with my sensor data; it's close enough.

This problem is particularly awkward for us without a pancreas and our brittle (erratic) diabetes in low glucose circumstances. Without the pancreatic hormones to respond for us and help regulate, we can fall very quickly; and without Libre 2 more accurately quantifying how rapidly we are falling, it is not easy to see exactly what is going on, thus make the best response. For me this where my Diabox CGM app is a significant improvement; I found this app in June 2021 and having it has been a huge improvement on Libre 2 alone. Libre tells you of two rates of change: sloping arrow = gentle change up to 0.1 mmol/L/min (in 5mins you could change by 0.5mmol/L); vertical arrow = anything greater, which could be just a tiny bit more than sloping or dramatically more. Diabox puts a number to that rate of change and I frequently get told it is 0.4mmol/L/min and I've seen it up to 0.7mmol//L/min. So I get a better chance of recognising if my fall is dramatic and thus hit it hard with the JBs accordingly. But the real bonus is the CGM is informing me without having to flash scan, using a sophisticated alarm system worthy of the current decade. Libre 2 and LibreLink feel very dated in comparison. 

The Libre low alarm caps you to an upper level limit of 5.6. Why Abbott set that limit defies any logic. Why shouldn't someone need a higher level? Why set a cap at all? I found, regularly in the early days that an alarm at 5.6 or below was too late, if the fall was with a vertical arrow; I couldn't intercept the forthcoming hypo in time. Now, with Diabox I have 2x low alarms, an upper low alarm which I use to tell me change is going on and a 2nd low for which I have a siren sound; this makes me pay attention!! And it wakes me in the night which stops hypos, other than brief dips below range.

From time to time you will get Libre readings greater than actual and in due course Libre will read less than actual. This is not only normal, but good; it confirms that Libre is providing readings that follow actual, yet are not hugely adrift; the actual is simply doing what it does, going up and down. If the Libre arrow contradicts that interpretation, it is because the Libre reading is a flash scan - ie an interpretation by the sophisticated algorithm of what it thinks is happening. My CGM gives an opportunity to see what is happening minute by minute and observe small changes from rise to fall and back again - of course it doesn't explain why things are changing, but that is for another day.

So, I think enough for now; I'll pause and give you time to digest all of this and earlier. As before, don't hesitate to ask. I have successive days when I diligently follow the blogs, then I get distracted and barely monitor. But dialogue and comments on blogs I'm following get flagged up on my email account, so I know there is further activity. If you want to get wider views on a specific topic, try raising a separate blog with a succinct title - which might attract others to comment.

Stay strong.


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## The robin (Jan 11, 2022)

Hi again,just a quick reply this time . We’ve just done some quick research on ’diabox’.
According to the site it says they are not yet compatible with iPhones but are working on it.
How exactly does it work and I presume you had to personally purchase this.?
From the off we have had trouble getting people/ professionals to accept type 3c needs to be recognised more.
How have you gone about getting travel insurance because type 3 c is not listed in the medical criteria .
Thank you again,your help is very much appreciated.


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## Proud to be erratic (Jan 11, 2022)

The robin said:


> Thankyou for that ( not lengthy at all) speaking to someone who is in the same situation as me is really helping understand various aspects of it all.
> I am 58 and in full time employment .I have accepted that when recovered I will be returning on much reduced hours,luckily my employer is extremely supportive. My consultant told me that after the op I would never be 100%, he said 85-90%,he has always been totally honest and upfront.
> I am on permanent penicillin because I have no spleen,so immune system is very weak. I also had digestive problems,mainly lack of bowel movement ( too much info!)and I am on a procalcopride tablet,daily which does its job.
> Another post op problem I am having is a recurring build up of pressure that often feels as if it is going to become painful but then releases……strange.
> ...


Judy, thanks for amplifying.

In principle I agree with the notion of holding off on carb counting straightaway. But at some stage you will need to do this if you are going to get a better handle on what is going on with your metabolism and obtain better control of your diabetes. 

Because you take insulin you can eat what you wish, so to speak. I'm fortunate enough to be at an ideal weight so my own diet is about what is healthy, what I enjoy and I bolus accordingly. I asked 2 dieticians over the last 12 months, while trying to pin down my own gastric probs; neither gave me any clues for the "ideal" diet; both said my regime was fine.

I completely recognise having erratic BGs, even though you don't think anything has changed.

Has anyone mentioned the 42 factors that can affect BG? 
Has anyone (apart from me yesterday) talked about stress and diabetes?
What do you understand is meant by in range?
Hence diabetes is complicated, confusing and contradictory. 

There is so much to learn about and take on board; but don't panic, every day brings a little more knowledge and understanding. Every day brings a little more info about what works for you and what doesn't. I sincerely hope for you that your post op problems steadily get resolved. 

I remain happy to reply to any questions as best I can. There is a wise caveat within Diabetes Uk: we are all different; what works for me might not work for you. But members offer their views with the best of intentions. Stay strong.


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## Proud to be erratic (Jan 11, 2022)

The robin said:


> Hi again,just a quick reply this time . We’ve just done some quick research on ’diabox’.
> According to the site it says they are not yet compatible with iPhones but are working on it.
> How exactly does it work and I presume you had to personally purchase this.?
> From the off we have had trouble getting people/ professionals to accept type 3c needs to be recognised more.
> ...


Regarding Diabox, it is free. I originally found the "apk" file after I'd purchased a mini Bubblan; days later someone pointed out that the latest Diabox release worked directly from Libre 2 using  Bluetooth low Energy (BLE). In July if I remember correctly, withban updatevin August. The Diabox app takes the Libre readings (which are continuous) and uses its own Diabox algorithm to display the continuous BG. Because it was a new update for Libre 2 there were some teething problems, but I stuck with it and would not willingly surrender it today. It is not available on either Google Play store or Apple equivalent store. I can take a few screen shots and attach those to give you an idea of what it displays, not tomorrow - busy day ahead.

Because I'm on Android I was aware of the ios problem, but I've not been following the detail. I thought I'd seen on Facebook a few days ago an announcement by LibreHack that his fix was now live. He was temporarily frozen as an Apple app developer, but got reinstated; there was a lot of politics behind that, with Abbott trying to stop things being piggy-backed off their sensor. I'll look on Thursday or Friday and update you accordingly. Its written by techs who are themselves diabetic and understand what is useful for us; there is a small team who review update suggestions from users and who moderate the Facebook site. I only really use Facebook for diabetes info; I'm not into social media generally. I'm also limited in my tech capabilities; it's got to be straightforward.

I haven't sought specific travel insurance in the last 2 years. Health and lockdown issues have meant we haven't travelled anywhere outside of UK. When I do need to update my insurance I will tell them I'm T1, following a pancreatectomy. I anticipate they will agree its a notified medical condition for which I won't get specific cover. That is how they treated me when I declared my Ulcerative Colitis in 2004. My UC has mucked up my immune system, but luckily not to the point that I need meds like penicillin; horrible luck for you on that. (But diabetes does generally make you more susceptible to other illnesses). Did your spleen removal cause you any insurance difficulty? 

Stay strong.


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## The robin (Jan 12, 2022)

Hi again,thankyou for your detailed reply,much appreciated.
Ill keep an eye on the development regarding the Diabox.
I am not on Facebook,never have been,I stick to twitter/ WhatsApp and I like everything in plain simple English.
We travelled abroad ( I look back now and think how brave or daft we were)in 2020. Having my spleen removed has nev caused any travel insurance difficulties.
We have been looking at insurance this week and came across a few issues; there is no option for type 3c.
I ended up giving them a call she said to select type 1, there is no option for total pancreatectomy only if it has been removed because of cancer, mine hadn’t developed into cancer( it would have done in time). She said that is still what I had to select. Also said if the op had been in the last 2 years you have to declare it. So I’m presuming if there is no longer ongoing treatment for the pancreas,which there isn’t then no need to inform them.
When we got the quotes,it rocketed when I put the pancreas issue in. You may be more fortunate as in the timing of your op.
judy


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## The robin (Jan 12, 2022)

Proud to be erratic said:


> Regarding Diabox, it is free. I originally found the "apk" file after I'd purchased a mini Bubblan; days later someone pointed out that the latest Diabox release worked directly from Libre 2 using  Bluetooth low Energy (BLE). In July if I remember correctly, withban updatevin August. The Diabox app takes the Libre readings (which are continuous) and uses its own Diabox algorithm to display the continuous BG. Because it was a new update for Libre 2 there were some teething problems, but I stuck with it and would not willingly surrender it today. It is not available on either Google Play store or Apple equivalent store. I can take a few screen shots and attach those to give you an idea of what it displays, not tomorrow - busy day ahead.
> 
> Because I'm on Android I was aware of the ios problem, but I've not been following the detail. I thought I'd seen on Facebook a few days ago an announcement by LibreHack that his fix was now live. He was temporarily frozen as an Apple app developer, but got reinstated; there was a lot of politics behind that, with Abbott trying to stop things being piggy-backed off their sensor. I'll look on Thursday or Friday and update you accordingly. Its written by techs who are themselves diabetic and understand what is useful for us; there is a small team who review update suggestions from users and who moderate the Facebook site. I only really use Facebook for diabetes info; I'm not into social media generally. I'm also limited in my tech capabilities; it's got to be straightforward.
> 
> ...


Hi again, I should have added that no,no one has mentioned the 42 factors. Regarding stress afffecting my BG,my nurse has said this can cause my levels to be erratic. By being in range,my nurse wants to see my numbers between 5-10 and hitting 70% on my libre.
Judy


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## Proud to be erratic (Jan 21, 2022)

Hi Judy, how are you getting on?

You are correct, it seems that Diabox for Apple phones is still not available; there is a "beta" version out, but unless you're happy to take a step into the unknown its probably not wise. The problem is in recognising if it is telling you something that is super important, along with possible instability with the app. However, if you can't wait - then do you have family or friend with an android phone you could borrow?

I promised to send you some screen shots of what Diabox displays and my apologies for being so slow in doing this. I took some on my phone today and I need to write a little explanatory narrative about what I'm seeing from my screen, to provide some context. Then move those screen shots and narrative into this tablet. Not too difficult, just pushing at the boundaries of my competence! But something I ought to know how to do.

There is a Thread on the General Message Board: 



			https://forum.diabetes.org.uk/boards/threads/who-are-treated-solely-by-gp-and-who-have-endo-sdns.97953/unread
		


which might be of interest to you. I haven't read it today but it was seeking other people's experiences of what GP or specialist treatment they have had. I remember that I found the overall responsibility for my care to be complicated and downright confusing. Who should I ask about what and how do I contact them? I naively thought my GP would have the big picture overview - but I couldn't have been more wrong and I've concluded I have to "own" that overview. Luckily I feel able to do that, but it disturbs me knowing that not everyone can do that. You, perhaps, came across this problem with your original pancreatitis diagnosis and now transition to include diabetes.
Regards.


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## The robin (Jan 22, 2022)

Proud to be erratic said:


> Hi Judy, how are you getting on?
> 
> You are correct, it seems that Diabox for Apple phones is still not available; there is a "beta" version out, but unless you're happy to take a step into the unknown its probably not wise. The problem is in recognising if it is telling you something that is super important, along with possible instability with the app. However, if you can't wait - then do you have family or friend with an android phone you could borrow?
> 
> ...


Hi,thank you for your reply.
I’m still very up and down. Had my bloods (lfts) done before Xmas,came back borderline,had them re- done,came back abnormal. Doctor rang me,wants to re-do them again on Monday,if they come back as high again then he is getting in touch with my consultant for advice. Doctor thinks it could be a short stay in hospital,put on a drip to repair my liver.Hopefully it doesn’t come to that.
Please don’t go to too much trouble regarding diabox,although it would be very much appreciated. I won’t be going down the road of getting an android phone, I will just be patient and with luck it will eventually come on iPhones.
On another note can I ask what are your usual readings when you first awake and do you have hypos and hypers in the same day? What time scale do you use when taking insulin before a meal?
I can have hypos during the night 2.5-3, treat with 2 jelly babies then awake with readings of 12-15.
They tend to rise before going to bed so I’m treating with 1 or 2 extra units.
I try and take my insulin half an hour before main meals. Hope this makes sense.


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## Proud to be erratic (Jan 22, 2022)

The robin said:


> Hi,thank you for your reply.
> I’m still very up and down. Had my bloods (lfts) done before Xmas,came back borderline,had them re- done,came back abnormal. Doctor rang me,wants to re-do them again on Monday,if they come back as high again then he is getting in touch with my consultant for advice. Doctor thinks it could be a short stay in hospital,put on a drip to repair my liver.Hopefully it doesn’t come to that.


Hi Judy,

Really sorry you are very up and down. I am also still pretty erratic sometimes; indeed only yesterday I realised that I haven't had a single day 100% in range since October. But my overall time in range is gradually improving; still very slow work in progress. Sometimes I know what the cause is and sometimes I simply don't have a clue. Below is me over the last 24 hrs. The tiny 7.8 in the top left is Diabox giving my BG at that moment (by chance = my libre reading, not always so close).

And this is what I see on Diabox, 5 mins later BG=8.2 and climbing slightly. Each dot is a reading from every 5 mins and this screen is displaying the last 12 hrs (my choice, could have been 1, 3, 6, 12 or 24 hrs). The mild rise didn't actually happen, I know to not react to possible mild change.


If I scroll further down that D'box screen, below, I can remind myself that I have my non-urgent high alarm set for 10 (Urgent high alarm is normally 15 and I would usually  take a correction bolus at that point). The routine low alarm is set for 6.2, which I just monitor happy to be below that when change is gentle (the 26% reflects time below 6.2, not below 4, but if  I want that I just set the upper low alarm at 4 and the % will change - today nil so far) and the Urgent low alarm is routinely at 4.2 and I'm scrambling for JBs if the Urgent low siren goes!


The Std deviation, GVI & PGS are interesting (bottom of screenshot above) fairly reflecting my Glucose Variability Index (GVI) is poor; to be expected with no pancreas and consequent brittle diabetes. My challenge to myself this year is to improve that GVI.

Before my pancreatectomy I had a stent fitted to bypass the bile duct blockage from the tumour. The relief to my deep jaundice was almost instant - quite amazing. But during the procedure they nicked my liver, unfortunately. I started to feel off and getting worse daily, but didn't realise my liver had been damaged. Just before Xmas I spoke on the phone to my nominated cancer nurse and she fobbed me off; I accepted that, slightly unhappily. On 2 Jan 20 I had to have a CT scan prior to my forthcoming surgery, and felt very ill. I insisted there was something wrong, spoke to & immediately got seen by the senior cancer spec nurse who was able to see my scan results from 45 mins prior and immediately spotted the liver infection on the scan. A blood test identified the specific culprit and 24 hrs later I was on appropriate antibiotics. By this time I was seriously ill, but the abx did their stuff and recovery was pretty swift. So I totally empathise with having a liver problem and if those circumstances recurred I would not allow someone to fob me off again - and insist on being taken seriously.

Regarding your current difficulties: during the night I am anything from 7 to 4. But each night can be quite different. Firstly I recently reduced my basal Tresiba from 11 to 10 and the outcome from  that shows particularly well on Diabox. Previously I was making sure I was close to 9 before going to sleep, knowing that my basal would drag me down during the night; after allowing 3 days for the Tresiba change to take effect my night variability is a lot better (as I hoped).  Secondly if I'm close to 10 or above I'll take a correction bosul dose before going to sleep; I always finger-prick before that correction, and then exercise judgement on how much correction trying to get to 6 through the night. I rarely hear the upper alarm during the night, but have the volume setting so that the Urgent low alarm always wakes me; so even if I'm overcorrected I get woken up. Sometimes Libre shows I've had a low glucose event during the night, but I'm pretty sure that I haven't. It's just the inherent inaccuracy of the sensor and sometimes the sensor failing.

Your night hypos are bad, too close to problematic for comfort. If your basal is too high overall, then during the night it will drag you too low; presumably you take Tresiba 1x daily - is that morning or evening? You might be worsening things by applying correction if your basal is wrong. I'm not qualified to give medical advice, but as a principle it must be better to sleep safely, albeit a little high than to go hypo while asleep. Internal damage from being too high isn't ideal, but in short bursts I think it's OK, particularly if below, say, 13 or even 15.

I can't remotely explain why you wake up in the 12-15 range after a night hypo and only 2x JBs (c.10gm CHO). Does your Librelink screen shot show an identifiable trend, eg the time and duration of hypo, and the response from JBs? Do you keep a log of what your evening meal was for those occasions? Does that log include absolutely everything? I am mindful that you aren't yet carb counting (and when you start it takes a while to get things about right, so there will be hiccups initially); so the reality is that your pre-bosul isn't matched to your carb intake and the time between bosul and food digestion isn't matched to the GI of what you've eaten. So a rich low GI meal might not start digesting for 3 hrs ... and then your insulin might time lapse after 4 hrs or longer, depending on your natural insulin resistance. It's pretty complicated already and there are still 35+ factors that can play tricks with your BG. But, possibly the real culprit here is medical induced stress - is your liver playing up during the night?

There is something called the Dawn Phenomena (DP) or Foot on the Floor response, which elevates BG on first wakening? I, naively, wrote on this forum before I'd got Libre that I didn't get the dawn phenomena; I was wrong! I now can clearly see this response on my BG most early mornings. I thought no pancreas and thus no glucagon hormone meant my liver couldn't receive any instruction to open the glucose store, but it does.  This doesn't happen to everyone, but is fairly common and apparently is a product of evolution and our innate response to go mammoth hunting before breakfast! If you want to know more about this just search for Dawn Phenomena in this forum (top right corner of the page). However this for me is 2 mmoL/L and it often dissipates before I take my first bolus. The questions that intrigue me about the Dawn Phenomenon are: which hormone is triggering this (and how/why)? Why does it sometimes dissipate but not always? Why does it happen sometimes, but not always? Why can I sometimes get 2 hits, when I wake in the small hours and need the bathroom, then later when I wake to get up? One day I'll try to nail down more about this, but what I've read so far has not helped; but it's not so important - it exists for me, sometimes. It could be a small part of the explanation for you.

I strongly suggest you ask your DSN to look at your LibreView and advise you accordingly. I'm presuming you had to establish LibreView and provide the hospital diabetes team with access to your data - as a condition of being fitted with Libre. There are a number of factors in this bit of the jigsaw, for each time this has occurred? If you don't already keep a detailed log I suggest start now - either on a phone or computer OR just on paper. Record as much as you can: exactly what you are eating and drinking, particularly in the evenings; prebolus detail and meal start time. What time you go to bed (routinely take a Libre scan) how long roughly before you fall asleep (scan again) (I can spend an hour reading before sleeping); any night excursions (bathroom or hypos) (scan again), when, what response, etc. You and your DSN are trying to find a pattern or common denominator for your hypos - my DSN made useful adjustments to my DM management from fortnightly scrutiny of photos of my manually completed logbooks, sent by email during lockdown. Record finger pricks, but for hypos scan as your first response and treat,  then finger prick.

Finally consider raising your night time alarm to 4.5 at least, if necessary even higher. You need to get ahead of the hypos and better to be woken (disturbed) to fend off the potential hypo. Broken sleep is far from ideal, but in my opinion far better than hypo while sleeping.

Again, this is far too long ... but stick with it, stay strong and contact your DSN ASP.


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## trophywench (Jan 23, 2022)

As a complete aside it pleases me to see people happily quoting phrases that myself and others I've known for donkey's years actually started using.  eg FOTF syndrome first aired I think by EDUAD on his Blog.  I started the 'hunting the woolly mammoth' one - we already knew about Dawn Phenomenon and that it was a primeval bodily response which humans still retain - so when explaining it to someone one day I just though well, primeval man was either a hunter or a gatherer so he needed the energy to go and get food, didn't he? so I decided it was more amusing to picture him going and hunting the woolly mammoth to kill and eat than go rooting for leaves, nuts and berries etc.

FWIW not having Type 3c myself - I think what @Proud to be erratic has said above re it being a basal (ie Tresiba) dosage issue and it being preferable to have BG a little high overnight instead of hypo, is cock on.


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## Proud to be erratic (Jan 23, 2022)

Judy @The robin ,

I've just been woken by my Diabox Urgent alarm telling me I'm hypo and at 3.2. But I'm not! I was already half awake and didn't feel hypo, so I finger-pricked before treating and confirmed what my body was telling me: that I was actually fine and BG=6.9. I'd had a compression low, where I must have put pressure on my sensor in my sleep and generated a false low reading, which both Libre and Diabox responded to. Within a few mins from being woken, Diabox had corrected my BG. My Diabox detailed logs show 2 low readings and 2 low dots on the screen graph, but Libre has ignored them.

My actual BG was 10 at midnight (Libre said 10.9), so I took a correction of 2 units to get from 10 to 6 (my night target) at a correction ratio of 1:2, before going to sleep. The Libre graph shows that happening between midnight and 02.30ish. Then a dip around 04.30, but not into hypo territory and ignoring the scan of 3.2\ at 04.33.


I didn't ask you if your night hypos were prompted by Libre and if you actually felt hypo, or if you confirmed these with a finger-prick. Could they be compression lows?

Your LibreLink screen graph or daily graph reports should tell you more; if the hypo was a compression low, then it might not even show on the graph, since the Libre algorithm will discard 1 or 2 out of place readings. Do your night hypos show as low glucose events, ie  lasting for more than 15mins?

I now revise my suggestion: from a Libre night alarm, if you don't feel hypo, don't treat before finger-prick testing, in case it's a false low. If you had a compression low and were actually mid or upper range, then your 10gm carbs plus Dawn Phenomena could perhaps be pushing you into your 12-15 readings.

@trophywench , pleased to help consolidate the mammoth hunting theory. All the best theories need peer evidence to ultimately prove them! I originally found "Foot on the Floor" as a symbol in the MySugar app, which I used until I got Libre in Feb 21; I still prefer that app to LibreLink, but of course I have to use the Freestyle tools as part of my NHS obligation, in return for getting Libre on prescription.


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## The robin (Jan 23, 2022)

Proud to be erratic said:


> Judy @The robin ,
> 
> I've just been woken by my Diabox Urgent alarm telling me I'm hypo and at 3.2. But I'm not! I was already half awake and didn't feel hypo, so I finger-pricked before treating and confirmed what my body was telling me: that I was actually fine and BG=6.9. I'd had a compression low, where I must have put pressure on my sensor in my sleep and generated a false low reading, which both Libre and Diabox responded to. Within a few mins from being woken, Diabox had corrected my BG. My Diabox detailed logs show 2 low readings and 2 low dots on the screen graph, but Libre has ignored them.
> View attachment 19814
> ...


Hi again,
Thankyou for all this in depth detail, I’m finding it really interesting and helpful to compare.
Im still trying  to get my head round all the language everyone uses…..baby steps.
I will attach my readings from today,unfortunately mine are very different on a daily basis at the minute. I do read all the various charts on my libre but sometimes it just baffles me,again it’s a matter of getting used to it. Today we went for a 5 mile walk and I’ve learnt that any exercise that my levels will plummet. My DSN advised me to reduce my bosul by 50% which I did.
My insulin doses are very different to yours:
Tresiba, basal ( always in the morning)18 units.
Nova ,bolus, 4 units at breakfast,5 units at lunch and 4 at tea time.
I have my libre alarms set at 5 and 15, my hypos have always been hypo ( symptoms). I always do a finger prick when this happens.
I intend to scrutinise my sensor behaviour during the night a lot more. I have been thinking of starting a log and I intend to,so it will hopefully make me more aware of how my levels are reacting to different foods. Yes, my liver pains,discomfort is playing up during the night
Regarding the Dawn Phenomena and not knowing anything about it I had realised that my levels behave pretty well from waking up to lunch time.
My DSN has access to all my libre view data and keeps assuring me that I’m doing well. But I sometimes wonder how much they ACTUALLY read it.


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## Proud to be erratic (Jan 24, 2022)

Hi again Judy,

Lots to digest here and a fair amount is difficult (impossible really) to comment on, because I don't have sufficient detail and more significantly I don't have the experience or qualification. 

BUT, starting at the end: your day at a glance is comparable to some of my early ones and only a bit more extreme than my current ones. My main achievement in the last 11 months has been in intercepting hypos and that has only been achieved thanks to CGM with a higher "low" alarm. Your mid-morning fall from 14 to 4 in 4 hrs is not surprising. Was that while you were walking? It seems that you didn't actually go hypo, or if you did it was only briefly and not a low glucose event of 15 mins. So, a pat on the back from here: you navigated an active day and fended off going hypo.   

From the screen, again, you seemed to have a modest rise between 06.00 and 08.30, but no Libre entry visible, so no snack? Could be the Dawn Phenomena or Foot on the Floor syndrome ... ? A rise of about 2 mmol/L is what I experience.

Then a big climb around 9am up to 14, which would be your breakfast arriving before your bolus got in place. Not ideal, but without knowing more about your breakfast and it's carbs as well as your likely insulin to carb ratio, its difficult to comment. 4 units of insulin could cover perhaps as little as 30 gms CHO or as much as 50 and that difference is solely down to your personal ratio. When you start carb counting you might be told to assume 1:10, ie 4 units covers 40gm CHO. But your DSN might look at your data and suggest 1:8. So if your actual breakfast meal is 48 gm CHO, at 1:8 you'd need 6 units.

Sadly there's a few more sums to do before that theoretical dose of 6. Should a correction be applied, since you are taking the breakfast bosul at 8+? I would try to target a level of 6, or 7. So a small correction for me. Then there is getting the timing between prebolus and eating a little better. Oh yes .....  are you planning to be active after breakfast, if so how active and for how long? Most days I'm intending to be active, but often am not (for various reasons) and what I finally do can be a long way from my intent. For me my bowel activity dominates my start of day. All in all your bosul, food and outcome isn't ideal, but it's FINE considering you are not carb counting. It would be a bit of a miracle if you were close to 100% in range at this stage.

I suggest looking at your daily graphs in LibreLink reports for the last 7 days, not in fine scrutiny, but to see if there is a sort of pattern about when you peak and when you fall. An Endo pointed out that I seemed to fall mid afternoon most days and to keep that in mind by taking a 3pm snack daily. He was correct.

The 6pm fall and then rise was presumably your pre- bolus then your dinner arriving; but you seem to have omitted to log that. If you had no external input of insulin or carbs around that time, then I have no idea! But you seem to have intercepted another hypo? Great.

Turning to insulin and exercise or activity: even the mildest of activity will affect your BG. No pancreas means you can't rely on your body to self-regulate, like everyone else around you does. If its mild or medium activity [aerobic] you can generally expect a steady fall in BG. No problem really, just snack AND stay hydrated as you exercise; yes, I know its not really that simple: first you've got to remember to do it, thus have the snacks and drink organised and close to hand, also how big a snack and high or low GI?  Trial and error brings experience and improved management! You learn what works for you. But from 5-20 CHO rather than 25 upwards works for me; a little - often.

For high or intense [anaerobic] activity, such as sprinting or even fast walking your BG may well rise; this might seem counterintuitive. Your body thinks you are in or about to be in "flight or fight" mode and releases extra glucose from the liver in readiness. Once this glucose has been released it needs (in theory) extra insulin to take it out of the blood and into your cells and muscles; however, in practice the exercise reduces your body's natural resistance to insulin, so the insulin you have on board goes further. This might not be medically exact, but in layman's terms that's what is happening. So no extra bolus needed for that surge release under anaerobic conditions.

I expect, after a particularly active day, my susceptibility to frequent BG crashes because of that activity and this will last 2 or even 3 days. I'm interested to know if you find this after today's 5 mile walk.  

Regarding pre-activity bolus: my new Endo told me to start at a 50% reduction and be prepared to go stronger, ie more than 50% reduction. I cautiously started at 65-70% and that wasn't enough, so tried 50% the next time, which was better. I'm currently applying 50% every morning, in anticipation of getting active reasonably soon after breakfast - which sometimes (often) doesn't happen, hence my recent trend of being above 10 at late midday.

That's enough for now, I'll answer or comment on a couple of other things tomorrow. But I'm very interested to know if your recent night hypos and yo-yo bounce recovery were confirmed by finger pricks or you really feeling hypo - rather than possible compression lows. 

My "non-medical thought" is that your basal is too strong and your bolus too weak BUT that is just my thought. I'll explain why tomorrow. I agree with your DSN that you *ARE* doing well; yes it's definitely more erratic than you want, but the last 24 hrs average was in range at 9.7 and yes you'd like to spend more time in range, but you will get there. 

Stay strong, stay positive, don't let this stress you; learn something from today and try to apply that one something tomorrow (you mentioned baby steps ......) and take* a pat on the back*: you fended off 2 hypos in the last 24 hrs. The evidence is in black and white (with green shading!). No one has said this is easy.


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## The robin (Jan 24, 2022)

Proud to be erratic said:


> Hi again Judy,
> 
> Lots to digest here and a fair amount is difficult (impossible really) to comment on, because I don't have sufficient detail and more significantly I don't have the experience or qualification.
> 
> ...


Hi again,thank you once more for taking all this time to help me understand my condition and deal with it more efficiently.
Yes,my mid-morning dip was whilst walking. I expected a dip in my levels,so constantly monitored throughout the walk. I reduced my bolus by 50% and it seemed to work.
I take my bolus and basal together ( my nurse said this was fine)at 8am,breakfast of granola/fresh fruit and yogurt at approximately 8.30. I haven’t logged any food intake on the libre as not carb counting yet but do log jelly babies/dextrose when heading for a hypo. I do eat very healthy,eat very little junk food and prepare meals from scratch 90% of the time.
I tend to be pretty active in the mornings,keeping busy,cleaning,shopping etc and I don’t tend to have any massive drops/rises. Early afternoons is when I seem to hit a brick wall and sleep for 1-2 hours. I have a snack of a couple of biscuits or a snack bar around 4 ish, then evening meal at 6.
I’ve attached 2 random days graphs,just so you can see how up and down they can be. Please don’t think you need to scrutinise these,just wanted to give you a couple of examples.
Judy


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## Proud to be erratic (Jan 24, 2022)

The robin said:


> Hi again,thank you once more for taking all this time to help me understand my condition and deal with it more efficiently.
> Yes,my mid-morning dip was whilst walking. I expected a dip in my levels,so constantly monitored throughout the walk. I reduced my bolus by 50% and it seemed to work.
> I take my bolus and basal together ( my nurse said this was fine)at 8am,breakfast of granola/fresh fruit and yogurt at approximately 8.30. I haven’t logged any food intake on the libre as not carb counting yet but do log jelly babies/dextrose when heading for a hypo. I do eat very healthy,eat very little junk food and prepare meals from scratch 90% of the time.
> I tend to be pretty active in the mornings,keeping busy,cleaning,shopping etc and I don’t tend to have any massive drops/rises. Early afternoons is when I seem to hit a brick wall and sleep for 1-2 hours. I have a snack of a couple of biscuits or a snack bar around 4 ish, then evening meal at 6.
> ...


Hi Judy, I'm going to respond to this narrative and try to weave in outstanding points from yesterday - hopefully.

I'm glad you're finding this long-running saga helpful. I am however slightly concerned that this lengthy dialogue is pretty much me to you and vice-versa, and you aren't getting the full benefit of others from this forum contributing on any one aspect and you're seeing everything through my prism only. I'm almost 2 yrs into this, still learning lots as I go along and there may be much better advice available from others. I was quietly relieved when @trophywench commented recently. I am going to propose that our next batch of dialogue is in a new thread with a better title, that might catch the attention of others on the forum. More on that at the end. Meanwhile I am very happy to press on today.

Glad the 50% bolus worked for yesterday's walk. Did you have to snack at all? It's a nuisance walking and scanning frequently, but if you set the low alarm at the top end, ie 5.6, then you can walk freely and only need to react at that top threshold. How you react depends on how extreme the drop is. And adjust the alarm while you are below that 5.6 to, say 5 or 4.8; then you get a 2nd "tripwire" or safety net before reaching the dreaded 4!
This frequent scanning is, of course much easier once you have CGM, and I have a smart watch responding to the Diabox app so I don't really need to get my phone out of my pocket. The wonders of technology.

I used to take my basal and bolus together. I don't usually these days, because I frequently have a late breakfast and I prefer to use my basal jab as a reason to get out of bed and start my day; I have my phone clock alarm waking me at 07.55, for my basal at 8am. But Tresiba is in practice very forgiving and you can take your basal +/- 2 or 3 hrs without affecting your 24hr loading.

My breakfast is cereal, fruit, seeds, nuts, milk and a latte. My carb count for that is 96gm CHO, which at my breakfast bolus ratio of 8:1 means I need 12 units of insulin. This is a big breakfast, but it seems to suit my daily routine, although it contradicts the guidance I've seen somewhere that we should try to have 3 equal meals spread moderately evenly across the day. Because I still don't have what I could call good control, I have been contemplating changing my meal routine. If I do I'll do it for a full month and then take stock. I think there is no point in changing for just a few days, since so many other factors could come and play - distorting my trial.

May I suggest that you, as a small experiment, try counting (or at least estimating) the carbs in your breakfast; I think it might be interesting to see how your breakfast relates to your 1st pre-bolus of 4 units.

It's not too complicated, just  fiddly (I think) - first weigh each item: the carbs for your granola will be stated on the packaging. If you don't have the packaging you can look it up online; if you make it yourself use an arbitrary figure of 60gm CHO per 100 gm wt. But granola can vary quite a lot depending on the brand and type, so it would be helpful, but not vital, if that can be tied down a bit. If you have 30 gm wt, then the carbs would be 30 x 60%, ie 30x .6 = 18 gm CHO.

Fresh milk will be around 4.5 gms carbs per 100 gms or ml (same thing for milk and water) and measure or weigh how much milk you consume. So for 120ml or 120 gm @4.5% = 120 x .045 = 5.4 gm carbs. Fresh Milk varies very slightly and the difference is insignificant, but long life milk is a bit different as are some of the nut or soya milks; but the nutrition value is on the carton. Cream is  free, bliss for me.

Repeat for all the other ingredients; fruits range from 6 for strawberries to 20 for peeled banana; but a google search will give you a figure for any one fruit type that is close enough. The weight of a piece of fruit will vary: easy peelers and kiwis are fairly standard, but how heavy is the pear? Then add all the individual figures together. If this is too challenging send me by Private Message (PM) a list of each ingredient and their weight or volume and I'll do it for you, to get you started.

Now, ideally every day for a week have the same amount of carbs for breakfast: by all means change items eg different fruits but juggle wts to get near the overall total. This is a bit tedious at first, measuring and weighing etc but is worth the effort - then we can see whether your 4 unit breakfast bolus is about right. From your graphs it looks as though it might not be OK - but your basal could be wrong and thus pulling you down between 9am and 3pm. Or your level of activity (too much housework!!!). Its difficult to wrestle with this conundrum without a little more info and a few days consistency with the breakfast meal. No need to do this for any other meals at present, I just think it would be helpful to see how your day starts in terms of carbs and insulin. If you can calm down the first 9 waking hours you'll very likely calm down the rest of the day's graph.

Moving on, regarding logging entries into your LibreLink app: If you could scan and put a note in for each time you take insulin or any food, then your DNS will get a much better feel for what is going on overall, when he/she looks at your LibreView data. So scan just as you start eating, click on that entry in the logbook and ADD NOTE. Tick the Food  box, select meal from the drop down menu and select the meal type. If you don't have a carb value, leave that bit blank, if you have a guesstimate from the packaging etc then put that number in; it won't matter if that's fairly adrift. You and your DSN know your carb nos are "rough and ready". But some of the reports on LibreView will make a bit more sense and help in gauging why, at certain times, your control is not so good. If you forget, go into the logbook and retrospectively use ADD NOTE to annotate that you had a meal at whatever time that was. You don't need to be really precise about when, just give it your best guess. You asked how much do the DSN's ACTUALLY read the reports? I suspect not too much at this time, partly because you aren't carb counting yet and partly because you are still settling down to this new world. BUT when you have a specific problem that repeats 3 or 4 days in a row and you reach out for help, you are giving the DSN a fighting chance of scrutinising properly, knowing that what data that is there, is valid.

It's good that you are able and willing to sustain a healthy diet. I imagine this is at least an outcome of your original pancreatic problems. Well done. We used to prep most of our meals room scratch, but since I started carb counting we do sometimes use some ready made stuff. For example we could never have confidence in cooking rice from raw; I've seen on this forum that we are not alone with that. But we now buy the prepared rice packs that need a couple of mins in the microwave and so far the carb count on the packet has proved very reliable.

If a meal is cooked from scratch we make a batch; the ingredients are listed, weighed and total carb count established. Then the cooked batch is weighed which gets me to a carb % and my portion weighed onto the plate; the remainder is divided as appropriate and put into the freezer, clearly labelled with its weight and carb count for each portion. Then, when pre-bolussing the carbs are readily available. It's moderately straightforward, except I have to define in advance my portion size from the initial batch and bolus for that weight of meal. We now have a list of the weights for each bowl, jug, saucepan etc, so the batch weight can be calculated from deducting the pot weight from the gross weight. This does lead to "moments of domestic tension" sometimes! My wife does more cooking than me and I'm hindering her way of doing things. We also use standard measuring cups or spoons, with known volumes, always levelled off (no heaping). If this all sounds ridiculous - it is ... but after 12 months we have a carb value for most meal combinations and the counting process is generally quicker than it takes to explain here!

I couldn't resist looking, rather than glancing, at your graphs and from the 3 there are, I think, clear trends. You fall during the night, even when you start from a high level. This looks suspiciously like your basal is too high. You are in fasting mode and your evening bolus has dissipated. UNLESS you are applying a correction as you settle down for bed and that correction is too much causing the fall to be too much. But I think its both too strong bosul correction and excess basal. Please remember I am not medically qualified, so just my impression. You should discuss this with your DNS: send her an email with these 3 screen shots and seek advice.

You fall dramatically from mid morning to mid afternoon; the rebound is almost inevitable (for most of us). I need a bit more detail about food and insulin taken to pin down the "why" and so my thoughts on "what to do". But knowing the first fall is a trend you can defend against that by monitoring and small snacking - while "keeping busy"! Gradually you'll get a sense of when to start snacking and how big a snack; with Libre you can do small and often and scan accordingly, initially with medium to higher GI snacks for fast response, but not very high while still well in range. Save the JBs for when you're near the floor of 4. You're trying to slow the fall. Again only trial and error will allow you to find what works for you; I use Nairns oatcake biscuits generously loaded with peanut butter and Harvest Valley granola bars as my "controlling" carbs; sometimes a small bag of crisps, even half a Belvita @ c16gms carbs; generally not chocolate, it is too slow although I do take chocolate coated snacks when doing heavy stuff in the garden. I cut choc digestive biscuits in half, 5 gm each half and eat these perhaps 15-30 mins apart - a sort of continuous buffet!! But my CGM helps enormously.

Once you've gone hypo it is very easy to overreact and very hard to stay patient and wait long enough to see if you've turned the corner and are going back up the curve. There is a case for finger pricking before a 2nd set of carbs while hypo. Remember your Libre (interstitial BG)  is lagging behind actual by 2.5 to 5 mins; so if it was a long train going along your graph, while the tail (Libre) is at the bottom of the hill the engine (your actual BG) is already part way up the other side. Again  my CGM helps since it is usually calibrated against actual and (I think) taking the interstitial but adjusting the algorithm to show closer to actual. So I feel I'm seeing more clearly the turn back up the graph.

So that's my crude analysis: how to get a better handle on this? I would set my Libre low alarm at 5.6, the top of its range. I'd want to know at the earliest possible time I'm falling and seeing that you have this trend and at quite a fast rate I think YOU should also want to know as early as possible. Its very easy to get immersed in something while "keeping busy" and fail to scan as frequently as one might / should. Then at least you can make a decision about how aggressively you need to respond. You will get a better understanding of how aggressive and when, as you get more experience of responding ahead of being hypo. The up and down yo-yoing happened to me, just as harshly and it takes a lot of self-will to not panic when hypo and hold off from over-reacting. It is a contradiction: it's stressful and stress elevates one's BG. All of this is very demanding on your time and quality of life, I know. But time invested now in gaining better control from experiments and experience is, I think, worthwhile.

I'm not surprised you hit the wall and need some sleep during the afternoon; I did. You're around 4 months since surgery and still in recovery from that. I was going for chemo by this stage, but slept through much of that period, because I needed to.

My last point was about activity and exercise; but I'm going to start a new thread and ask others for their experience. I know some of the theories but it's an area I still am a long way from being in control of. I'll do this tomorrow; but I need to think up a catchy title that is short yet succinct. Not my forté (short and succinct!).

Regards, stay strong.


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## The robin (Jan 25, 2022)

Morning Roland, again my thanks for all the time you are taking to advise me. I completely understand you wanted others peoples input,that’s fine,what ever makes you feel more comfortable. It does make it more beneficial us being the same diabetes type,I appreciate all your suggestions.

I did have a snack on my walk when my levels began to drop,a Jaffa cake light snack bar. I tend to vary my bars.
Ive had a go at calculating my cabs at breakfast this morning,it will be easiest one to do as I have the same every morning.
I think this is correct but please let know if I’ve messed up,it’s maybe not 100% accurate but near enough.
Breakfast is granola,mixed berries,mandarin (in juice) quarter of a fresh banana,low fat Greek yogurt . 1 cup of tea. This totals;57 g, 57x.7=32.5.? I don’t have a big appetite so only have small portions. I’ve logged it on my libre aswell. Hope this makes sense.
Ive began logging everything in my own journal today aswell.
I get frustrated sometimes when I hear of people who are type 1 say” you can eat what ever you want, use portion control,any problems then just adjust anything with insulin”
Ive even heard diabetic nurses say this, not mine though.
Thanks again Judy


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## Leadinglights (Jan 25, 2022)

The robin said:


> Morning Roland, again my thanks for all the time you are taking to advise me. I completely understand you wanted others peoples input,that’s fine,what ever makes you feel more comfortable. It does make it more beneficial us being the same diabetes type,I appreciate all your suggestions.
> 
> I did have a snack on my walk when my levels began to drop,a Jaffa cake light snack bar. I tend to vary my bars.
> Ive had a go at calculating my cabs at breakfast this morning,it will be easiest one to do as I have the same every morning.
> ...


57x.7=32.5.?  I assume that is 57x 0.7
By my reckoning it is 39.9


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## The robin (Jan 25, 2022)

Leadinglights said:


> 57x.7=32.5.?  I assume that is 57x 0.7
> By my reckoning it is 39.9


Thankyou leading lights, of course it is,don’t know where I got my calculation from…. brain not functioning well at that time in the morning .


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## Proud to be erratic (Jan 28, 2022)

Leadinglights said:


> 57x.7=32.5.?  I assume that is 57x 0.7
> By my reckoning it is 39.9


Hi again Judy. 

Apologies, I'd hoped to get back to this sooner, but all of this week has been "interesting" - which really means exasperating and dispiriting, but a couple of lessons learnt. Last weekend I was taking stock and confirmed what I suspected, that for the last 21 days I'd had no low glucose events and no real hypos - only briefly dipping to 3.9. So, encouraged by that success thanks to my Diabox CGM in conjunction with Libre 2, I determined that this week I would intercept all potential hypers and try to get at least one 100% day in range. Oh how well that didn't happen !!! On Mon, Tue & Wed I was defeated within an hour of starting breakfast, then in the afternoon and again in the evening; average time in target for those 3 days c.60%. So yesterday I adjusted my strategy and dedicated every waking moment to monitoring my BG (completely unsustainable in the longer term, of course): as soon as my BG started to rise I "got active" - out my chair, house jobs (anything that needed doing, particularly if it meant upstairs then downstairs), outdoors wire brushing the weeds in the block paving, walking ... you can see the intent. Outcome: between breakfast and the possible 5 hrs of my bolus being active I had 4 steep rises and 4 crashes! A couple touched 10.1 and 3 reached 4.1. I was really unstable and I can't explain to myself why. Then after dinner I lost! I raced up to 13.8, I still had insulin "on board" so didn't want to take a correction and "stack" my insulin. So I went for an hour's walk between 10.30 and 11.30pm and worked my BG back to 7 which continued to gently drop further. Net outcome: I'd again not succeeded in getting 100% in range, but tried. My watch records I took 17,464 steps.

Moving on: about your breakfast carbs. Ignoring 32.5 vs 39.9, I'm not clear why just 1 "sum"? 

I was anticipating you'd either present a final total figure or more likely, a small list of ingredients, the weight of each, the carb % applied and hence a total. Eg:

Granola                        30gms   @ 67%      =   20.1
Mixed berries              40gms   @ 8%        =      3.2
Mandarins in juice      75gms   @7.7%      =     5.8
Banana 1/4 (w/o skin) 30gms @ 20%     =      6
Low fat Greek Yoghurt 40 gms @ 4.7%    =      1.9
                            Total         =    37 gm CHO

Obviously you need to enter the correct weights, your best guess. For the carb content I took the granola % from Carbs & Cals; mixed berries I guessed; mandarins from the Tesco tin in our cupboard, Del Monte is  slightly different 9.8% (insignificant difference); all low fat plain yoghurt is c.4.7; banana is a bit odd - most places only give a figure with skin on, usually at 13%, I kept some records for a while and arrived @20% without skin, but as bananas ripen they lose weight AND convert skin into ripe banana adding sugar. So it's an estimate; and since I always have a whole banana my own b'fast estimate could be weak, often!   

The important thing is to derive a relatively standard count from your fixed ingredients and run with that for a few days, ideally at least a week. Whatever no the total CHO is, you can retrospectively edit wrong carb entries. It will be interesting to see if there is a trend; I'm still suspicious about your basal dose. But with at least 7 days of sound b'fast data your DSN should be able to appraise your basal and whether you need 4 units before b'fast.  All for now, BG rising after dinner (Why??), must get active!

Stay strong, regards, Roland


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## The robin (Jan 29, 2022)

Hi Roland,apologies not needed at all. I find it very interesting when I try and figure out why I have highs and lows ,sometimes I think I’ve cracked it but then do the same the following day and the pattern doesn’t continue. I’ve attached yesterdays libre graph,crazy day,hypos (finger prick confirmed)hypers galore. 
Had my bloods (lfts)done again this week and as expected abnormal,so my doctor is getting in touch with my consultant for advice.
I attempted to count my carbs and think I’ve made a complete mess of it. This is my breakfast,I weigh every item to 30g;
granola= 30g
mixed frozen berries =. 30g
lidl mandarins in juice =30g
1/4 banana=30g
lidl low fat Greek yogurt=30g
I got completely confused re carbs  applied so googled each item,then confused myself I think.
Impressive step counts.
Judy


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## Leadinglights (Jan 29, 2022)

The robin said:


> Hi Roland,apologies not needed at all. I find it very interesting when I try and figure out why I have highs and lows ,sometimes I think I’ve cracked it but then do the same the following day and the pattern doesn’t continue. I’ve attached yesterdays libre graph,crazy day,hypos (finger prick confirmed)hypers galore.
> Had my bloods (lfts)done again this week and as expected abnormal,so my doctor is getting in touch with my consultant for advice.
> I attempted to count my carbs and think I’ve made a complete mess of it. This is my breakfast,I weigh every item to 30g;
> granola= 30g
> ...


How are you confusing yourself, if you google the product it will usually give you the Total carbs/100g
So for example the mandarin segments (Sainsbury's as no info for Lidl ) is 14.4g carb /100g so your 30g portion would be 14.4 / 100 x 30 = 4.3g carb.
You can do the same with the other items and add them up to get the total for your breakfast. A quick estimate would be about 35g carb


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## Proud to be erratic (Jan 29, 2022)

The robin said:


> Hi Roland,apologies not needed at all. I find it very interesting when I try and figure out why I have highs and lows ,sometimes I think I’ve cracked it but then do the same the following day and the pattern doesn’t continue. I’ve attached yesterdays libre graph,crazy day,hypos (finger prick confirmed)hypers galore.
> Had my bloods (lfts)done again this week and as expected abnormal,so my doctor is getting in touch with my consultant for advice.
> I attempted to count my carbs and think I’ve made a complete mess of it. This is my breakfast,I weigh every item to 30g;
> granola= 30g
> ...


So:
Granola 30gm @ 67% (from carbs & cals) = 21
Mixed berries 30gm @ 8% (my guess)= 2.4
Lidl mandarins 30gm @10% (guess, what's on tin?) =3
1/4 banana  30gm @ 20% =6
Lidl low fat yog 30 gm @ 4.7% (my assump)=1.4
Total = 33.8 gms CHO for breakfast, say 39.

My breakfast insulin to carb ratio is 1:8 and for 39 units I would need 5 units. But if your breakfast ratio is 1:10 then your 4 units is correct. So once we've got a look at 7 days logged onto Libre and trends from that we (you, me and your DSN) may get a better insight.

Put another way: if you take 4 bosul units but actually need 5, then once you've eaten breakfast your BG is destined to always climb. Once you start to get active, be that delicate dusting, vigorous vacuuming or energetic exercise, then that activity will start to reduce your BG. This is what I'm currently doing - knowing that my 1:8 was right; these ratios do alter over time - just to add to the complication, but usually not quickly.

But if your basal is too big, it will always be dragging your BG down; in itself that might not seem too bad a thing, but it increases your likelihood of drifting into hypo and even if you successfully defend against that you are in effect "feeding the insulin". Also it makes calculating bolus needs much more complicated; the bolus is not just how much carbs are you about to eat, but also possibly some units to correct an existing high, as well as a % factor if activity is planned outside a normal daily routine.

I'm a bit busy right now, so will look again at your snapshot etc later. But the trend is clear and if you can intercept your fall between 9am and midday and PREVENT that deep hypo, then the rest of your day will be better. So as an experiment snack NOW. Better to go high than  hypo in the short term. Will get back to you. I fully empathise with repetition and analysis sometimes makes no sense!!
Roland


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## The robin (Jan 29, 2022)

Leadinglights said:


> How are you confusing yourself, if you google the product it will usually give you the Total carbs/100g
> So for example the mandarin segments (Sainsbury's as no info for Lidl ) is 14.4g carb /100g so your 30g portion would be 14.4 / 100 x 30 = 4.3g carb.
> You can do the same with the other items and add them up to get the total for your breakfast. A quick estimate would be about 35g carb


Thank you, I suppose it’s like anything,once I get my head round it all ,it will become a lot easier.


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## helli (Jan 29, 2022)

Proud to be erratic said:


> only yesterday I realised that I haven't had a single day 100% in range since October.


There is a reason why 100% in target days are called “Unicorn Days”.

There are too many things which can affect out blood sugar levels to aim for perfection, especially if you live a varied life with a varied diet.

When I was first diagnosed, I quickly found that fixed insulin doses would not work for me. Like @The robin i found my graphs were different every day. In hindsight, this is not surprising when my food (and carb content) varied every day. I am unusual that I do not have the same breakfast every day, I vary my lunch hugely because I quickly get bored with sandwiches and my evening meal could be anything from a low carb frittata to a huge bowl of high carb pasta.

It has always surprised me that a carb target is no5 given when we are started on fixed doses.


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## Proud to be erratic (Jan 29, 2022)

The robin said:


> Thank you, I suppose it’s like anything,once I get my head round it all ,it will become a lot easier.


I made your school error!! Total 33. 8 should be say 34. Sorry. So, close to your 4 units at 1:8 (=32).

I should really check what granola you have. Most are in the range 60-70%, but there are some low carb variants in the +/- 15% zone.

And this leads me to discussion about what is and is not significant in carb counting. Milk and plain yoghurt are very similar in carb %, both low 4.5 - 5%. So even when the weight (or volume for these liquids) is a bit hit and miss, the error is insignificant. Even if 50% more milk or yog, the change is still small. But granola is, usually, high carb, so measuring the amount is important; 10 % error in the measure can change the final number - significantly for me with my generous breakfast. Less so for you because your start point is 34 and even a drift to 37.5 (+10% difference) only makes a small change to your bosul calcs at 1:8. Thus 34 @ 1:8 needs 34/8= 4.5 units, and 37.5/8= 4.8 units; not a big difference.

Earlier @Leadinglights remarked on tinned mandarins. We have a Tesco's own tin telling us they are 7.7% carbs, in juice. If we'd erroneously got those in syrup they would 14%, near double (but not too big a problem for your modest b'fast). Del Monte are 11.8% and Sainsbury's 14.4%, apparently. Tinned produce can be quite varied in their natural form and for foods that are higher in carbs from the outset are equally varied when in a tin. I too often see people have cut out potatoes, but substituted them for sweet potatoes in the naive assumption they are less, but usually more. A

Anyway the broader point is be aware of what is significant and what is not, once you get enmeshed in carb counting. I make guesses for the low value items. But I weigh or measure stringently for higher items, on the basis there is lots of error elsewhere in the full process to confuse and cause difficulty; at least I've got the carb count pretty close.


helli said:


> There is a reason why 100% in target days are called “Unicorn Days”.
> 
> There are too many things which can affect out blood sugar levels to aim for perfection, especially if you live a varied life with a varied diet.
> 
> ...


Thank you @helli , I hadn't previously registered the "Unicorn Days" analogy - but it's appropriate. I'm in no doubt that I'm chasing the impossible, but my current experiment is (I hope) helping me to find just how active I have to be to intercept my highs and the boundaries of that so I don't precipitate a further steep fall. Also I'm hoping to persuade my Endo to help me get a pump and it's not unreasonable to provide hard evidence of what I need to do to remain stable and broadly in range and demonstrate this is a huge intrusion on my quality of life. Which it is. 

Yes, I too was surprised when I was discharged from hospital with kit and unexplained doses to take. To be fair the hospital lead diabetes sister spent some time with me explaining about carb counting and I made some primitive attempts while in hospital; but I was still struggling post op. So when I met my local DSN in Bucks the next day she encouraged me to not carb count and I regret I took her easy (lazy) option. 

I was (still am at heart) a civil and structural engineer by profession, so relatively numerate and loved engineering challenges. I see my DM in this light: a problem to be resolved and controlled. So my fixed breakfast suits me, not least it's what I used to do. But it's pretty varied, 15 different ingredients and around 100 gms CHO. My lunches, if I bother, are totally irregular, lots of protein and whatever is around. My dinners are also very varied, but rarely belowv30gms CHO. 

And yes my graphs were all over the place. They still are, but less so. However  as you already know its depressing and horrible to get frequent hypos, so it's natural to want to stop those. Then the deep hypos bring ridiculous rebounds and I found that pretty daunting. I don't seem to be affected by moderate hypers, but when repeatedly in the 20s it bothered me. It also frightened me because I had no idea what deeper damage it was causing, but I knew that my late brother lost both legs to DM and that remains at the front of my mind. So every reason to get on top of this pernicious disease. But perfection is unrealistic and not justifiable. 

But again thanks for providing some insight on your early experiences.


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## Proud to be erratic (Jan 30, 2022)

The robin said:


> Hi Roland,apologies not needed at all. I find it very interesting when I try and figure out why I have highs and lows ,sometimes I think I’ve cracked it but then do the same the following day and the pattern doesn’t continue. I’ve attached yesterdays libre graph,crazy day,hypos (finger prick confirmed)hypers galore.
> Had my bloods (lfts)done again this week and as expected abnormal,so my doctor is getting in touch with my consultant for advice.
> I attempted to count my carbs and think I’ve made a complete mess of it. This is my breakfast,I weigh every item to 30g;
> granola= 30g
> ...


Hi Judy, how did you get on yesterday? Do let me know, but only if you have time. 

That was a deep hypo you had on the 28th, as a matter of interest do you have your libre alarm set for lows and if so are you using the highest setting of 5.6 to give you a chance of intercepting a potential hypo? With the same logic have you tried having your high alarm set at, say, 8.5 to alert you when you're heading rapidly up hill? Then you could explore degrees of activity to curtail that high?
Regards Roland


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