Newbie

[The robin]

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

 

[Christy]

Welcome Judy 🙂

 

[The robin]

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.

 

[Christy]

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.

 

[Lily123]

Welcome to the forum @The robin

 

[Proud to be erratic]

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!!

 

[Cherrelle DUK]

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.

 

[The robin]

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!!

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

 

[Proud to be erratic]

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

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.

 

[The robin]

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.

 

[soupdragon]

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

 

[The robin]

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

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 .

 

[Proud to be erratic]

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.

 

[The robin]

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.

 

[Proud to be erratic]

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.

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.

 

[Proud to be erratic]

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.

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.

 

[The robin]

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

 

[The robin]

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.

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

 

[Proud to be erratic]

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.

 

[The robin]

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.

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.