High glucose reading

[Inka]

This is very similar to DAFNE and online @Debby11

https://www.bertieonline.org.uk/

.

 

[Inka]

There’s also this:

Carb Counting

.

 

[Proud to be erratic]

I will try changing my pen . My diet has not changed not eating much at the moment and not really counting carbs . I have increased my meal time insulin by 1 unit today and not sure on correction doses . When I rang the Doctors they advised ringing 111 which I haven’t done yet now reading 12 this evening after a day of highs . Thanks for reply.

Hello @Debby11 (and @Dom11), Debby nice to hear from you again - albeit that you currently have a problem with stubbornly high BG.

Several things have emerged from this thread that have caught my attention. The first is that you are still waiting for a referral to a Hospital Diabetes Team: that is, in my opinion, scandalous and a nonsense. As a T3c after a total pancreatectomy you should have been referred either to the Endocrinology team within the Hospital that did your pancreatectomy or if that Hospital was not your closest option then the referral should be to somewhere that is geographically more convenient for you AND that referral should have been part of your discharge paperwork after your operation. Are you sure that this referral doesn't already exist and you have lost sight of that bit of procedure? I lived in Bucks, but had my op in Oxford and my discharge paperwork was copied to both my GP and to my local hospital in Bucks; I had secured a new appointment with my GP for the day after my discharge, to establish what the Practice was going to help me with and I phoned my local Hospital Diabetes Department and got a face to face appointment with a Diabetes Specialist Nurse (DSN) 2 days after discharge. For the next 11 months I had a regular email dialogue with that DSN - who studied scans of my logbook and helped me tweak my (then) fixed insulin doses. If I were in your present situation I would phone your local Hospital Diabetes Team and explain that you had a total panc'y less than 4 months ago and now you seem to have "fallen through the cracks", not been seen or monitored by anyone since the surgery and you are now in some diiculty with unacceptably high BG. Then press for someone to ring you back and pick up from there. Debby, you should not be so unsupported after such major, life-changing surgery. Are you still under the watch and care of the Surgical Dept (HPB for me) that did your Surgery? If so phone there and ask for help with your Diabetes - I'm sure that they would promptly refer you to that Hospital Endocrinology Team.

I 've just read thatvyou are now carb counting, but don't know how to apply that knowledge. As suggested the Bertie online course should help you grasp some of that. I suggest you still press for a face to face DAFNE course since this will definitely supplement what you have gleaned so far from others and Bertie online. DAFNE covers a lot of other things and informs you particularly about the "judgements" you might make when altering various dose ratios, as well as when it's best to adjust basal (Toujeo) or bolus (NovoRapid); such decisions can be both subtle and not always intuitive. The face to face DAFNE introduces you to others who are insulin dependent and allows the opportunity to compare notes! I suggest don't fret if DAFNE takes 12 months plus to happen, there is a benefit from having learnt a certain amount before attending, then your questions can become quite specific for you; ALSO as a T3c your insulin dependency is not quite the same as T1s and I recognised that some of the things we were being told did NOT apply to me, I was able to check I'd got that right and reassure myself I was keeping up with the intensive learning going on.

The normal sequence is to try and get your basal right and keeping you in a good BG status throughout a 24 hr day, compensating for all the usual things that go on in your body. These are heightened for us with insulin dependency by our liver releasing glucose from its store in response to various hormones, such as adrenaline or cortisol; there are other body responses that trigger these glucose releases. Then somewhat worsened by not having the other pancreatic hormones that exist for most other T1s in their early years. The next step is to match the extra bolus insulin we need against the food and activity we are introducing into our day, additional to that going on in the background. Currently if you are on fixed doses of NovoRapid you have to do that the other way round and match your food to those fixed insulin doses. This is possible, but has "put the wagon before the horse" and is constraining or contradictory to living a normal life; it means very fixed meals at very precise times and removes any possible spontaneity to a lifestyle. By counting the carbs you are expecting to eat, along with some adjustment for the day's activity and exercise levels (things that we learn to do fairly instinctively) you take a dose of insulin measured to match your needs

As touched on earlier in this thread, your particular form of Diabetes is far too complex to be within the skills of a General Practice. With no pancreas, not only have you lost your insulin production, but:

You no longer make Vitamins A, D, E and K; do you take supplementary vitamins?​

​

You no longeer have the hormone Glucagon, which normally the brain uses as its messenger when the brain needs to tell the liver to open the liver's glucose store; without this normally inbuilt balancing mechanism you can be liable to very rapid drops in BG and is something you need to be aware of and ready to manage yourself. I have my Libre low alert set fairly high (in the 5s) and once that has alerted me I am very watchful through my Libre and ready to fend off a possible future hypo with a small snack, such as a biscuit.​

​

You've also lost the hormone somostatin which supplements some balancing between excess glucose and excess insulin, switching either off or down if necessary.​

​

And of course you've lost 95% of your digestive enzymes, which is why we take Creon. Have you got the measure of that yet, its more an art than a science? If you are not properly digesting all that you eat, apart from wind, bloating, discomfort and possible loose or compacted faeces the additional outcome is that carb counting is compromised so insulin dosing is affected.​

​

So there is a lot to get to grips with and YET it isn't as bad as I might make it seem. Now that I'm 3 yrs in I find I do a lot of my D management subconciously. The challenging part for me is dealing with the several associated medical problems that have arisen, eg the Oncology follow-ups that brought about the need for my total panc'y, the urology (prostate) problem that seems to have been triggered by the trauma of that major surgery, the hernias that recur on my incision and my ongoing bowel issues - but I've been diagnosed with Ulcerative Colitis since 2003 so this is my 'normal'!

Returning to your overly high BG: personally I would try increasing my basal by 2 units and monitor closely - keeping my hypo response stuff very handy in case those 2 units are too much. I'd set my Libre low alarm into the mid 5s and let the tech help me monitor; once that threshold has been crossed, I'd eat a small biscuit and reset that low alert to, say 4.8/4.9 and monitor. If I'm still falling I'd repeat with a similar small biscuit and reset my low alert to 4.4/4.5. Then a jelly baby (its faster). Those alert settings will depend on how close my Libre is to actual BG; I personally don't get a great correlation between Libre and actual - so I'm constantly mentally juggling (yet another niggle about managing D!).

Let us know how you are getting on. Do, please, ask questions; none are stupid, we've all been through this meleé of uncertainty and confusion and there is loads of experience waiting to be tapped from forum members. Do get ketone testing prescribed; your GP and the Hospital that discharged you have seriously failed you by not doing this from the outset and do chase any route to get yourself covered by a DSN, AS SOON AS POSSIBLE.

Lots in here, I appreciate probably a bit overwhelming! But hopefully some of this will help and I've included Dom so that he might be able to help pick out the immediately useful stuff - sometimes 2 minds are better than one. At the end of the day, you have the problem and only you can judge what you can implement. Good luck.

 

[Debby11]

Hello @Debby11 (and @Dom11), Debby nice to hear from you again - albeit that you currently have a problem with stubbornly high BG.

Several things have emerged from this thread that have caught my attention. The first is that you are still waiting for a referral to a Hospital Diabetes Team: that is, in my opinion, scandalous and a nonsense. As a T3c after a total pancreatectomy you should have been referred either to the Endocrinology team within the Hospital that did your pancreatectomy or if that Hospital was not your closest option then the referral should be to somewhere that is geographically more convenient for you AND that referral should have been part of your discharge paperwork after your operation. Are you sure that this referral doesn't already exist and you have lost sight of that bit of procedure? I lived in Bucks, but had my op in Oxford and my discharge paperwork was copied to both my GP and to my local hospital in Bucks; I had secured a new appointment with my GP for the day after my discharge, to establish what the Practice was going to help me with and I phoned my local Hospital Diabetes Department and got a face to face appointment with a Diabetes Specialist Nurse (DSN) 2 days after discharge. For the next 11 months I had a regular email dialogue with that DSN - who studied scans of my logbook and helped me tweak my (then) fixed insulin doses. If I were in your present situation I would phone your local Hospital Diabetes Team and explain that you had a total panc'y less than 4 months ago and now you seem to have "fallen through the cracks", not been seen or monitored by anyone since the surgery and you are now in some diiculty with unacceptably high BG. Then press for someone to ring you back and pick up from there. Debby, you should not be so unsupported after such major, life-changing surgery. Are you still under the watch and care of the Surgical Dept (HPB for me) that did your Surgery? If so phone there and ask for help with your Diabetes - I'm sure that they would promptly refer you to that Hospital Endocrinology Team.

I 've just read thatvyou are now carb counting, but don't know how to apply that knowledge. As suggested the Bertie online course should help you grasp some of that. I suggest you still press for a face to face DAFNE course since this will definitely supplement what you have gleaned so far from others and Bertie online. DAFNE covers a lot of other things and informs you particularly about the "judgements" you might make when altering various dose ratios, as well as when it's best to adjust basal (Toujeo) or bolus (NovoRapid); such decisions can be both subtle and not always intuitive. The face to face DAFNE introduces you to others who are insulin dependent and allows the opportunity to compare notes! I suggest don't fret if DAFNE takes 12 months plus to happen, there is a benefit from having learnt a certain amount before attending, then your questions can become quite specific for you; ALSO as a T3c your insulin dependency is not quite the same as T1s and I recognised that some of the things we were being told did NOT apply to me, I was able to check I'd got that right and reassure myself I was keeping up with the intensive learning going on.

The normal sequence is to try and get your basal right and keeping you in a good BG status throughout a 24 hr day, compensating for all the usual things that go on in your body. These are heightened for us with insulin dependency by our liver releasing glucose from its store in response to various hormones, such as adrenaline or cortisol; there are other body responses that trigger these glucose releases. Then somewhat worsened by not having the other pancreatic hormones that exist for most other T1s in their early years. The next step is to match the extra bolus insulin we need against the food and activity we are introducing into our day, additional to that going on in the background. Currently if you are on fixed doses of NovoRapid you have to do that the other way round and match your food to those fixed insulin doses. This is possible, but has "put the wagon before the horse" and is constraining or contradictory to living a normal life; it means very fixed meals at very precise times and removes any possible spontaneity to a lifestyle. By counting the carbs you are expecting to eat, along with some adjustment for the day's activity and exercise levels (things that we learn to do fairly instinctively) you take a dose of insulin measured to match your needs

As touched on earlier in this thread, your particular form of Diabetes is far too complex to be within the skills of a General Practice. With no pancreas, not only have you lost your insulin production, but:

You no longer make Vitamins A, D, E and K; do you take supplementary vitamins?​

​

You no longeer have the hormone Glucagon, which normally the brain uses as its messenger when the brain needs to tell the liver to open the liver's glucose store; without this normally inbuilt balancing mechanism you can be liable to very rapid drops in BG and is something you need to be aware of and ready to manage yourself. I have my Libre low alert set fairly high (in the 5s) and once that has alerted me I am very watchful through my Libre and ready to fend off a possible future hypo with a small snack, such as a biscuit.​

​

You've also lost the hormone somostatin which supplements some balancing between excess glucose and excess insulin, switching either off or down if necessary.​

​

And of course you've lost 95% of your digestive enzymes, which is why we take Creon. Have you got the measure of that yet, its more an art than a science? If you are not properly digesting all that you eat, apart from wind, bloating, discomfort and possible loose or compacted faeces the additional outcome is that carb counting is compromised so insulin dosing is affected.​

​

So there is a lot to get to grips with and YET it isn't as bad as I might make it seem. Now that I'm 3 yrs in I find I do a lot of my D management subconciously. The challenging part for me is dealing with the several associated medical problems that have arisen, eg the Oncology follow-ups that brought about the need for my total panc'y, the urology (prostate) problem that seems to have been triggered by the trauma of that major surgery, the hernias that recur on my incision and my ongoing bowel issues - but I've been diagnosed with Ulcerative Colitis since 2003 so this is my 'normal'!

Returning to your overly high BG: personally I would try increasing my basal by 2 units and monitor closely - keeping my hypo response stuff very handy in case those 2 units are too much. I'd set my Libre low alarm into the mid 5s and let the tech help me monitor; once that threshold has been crossed, I'd eat a small biscuit and reset that low alert to, say 4.8/4.9 and monitor. If I'm still falling I'd repeat with a similar small biscuit and reset my low alert to 4.4/4.5. Then a jelly baby (its faster). Those alert settings will depend on how close my Libre is to actual BG; I personally don't get a great correlation between Libre and actual - so I'm constantly mentally juggling (yet another niggle about managing D!).

Let us know how you are getting on. Do, please, ask questions; none are stupid, we've all been through this meleé of uncertainty and confusion and there is loads of experience waiting to be tapped from forum members. Do get ketone testing prescribed; your GP and the Hospital that discharged you have seriously failed you by not doing this from the outset and do chase any route to get yourself covered by a DSN, AS SOON AS POSSIBLE.

Lots in here, I appreciate probably a bit overwhelming! But hopefully some of this will help and I've included Dom so that he might be able to help pick out the immediately useful stuff - sometimes 2 minds are better than one. At the end of the day, you have the problem and only you can judge what you can implement. Good luck.

Hi thanks for all your valuable information I do feel as if I have been cast adrift a bit. Some of the information you have told me is all new to me , getting any details from the diabetes nurse at my local doctors is hard work and I haven’t seen my local doctor since discharge. I did have a follow up with my surgeon a few weeks ago but she is based at Blackburn hospital and as I live in Blackpool was referred to our local hospital. I get most of my information off the internet so I am definitely going to ask questions based on what you have told me…vitamins , keto testing , carb counting etc. I am still using the same dose settings I was discharged with no wonder I am up and down. I will re read all you have told me and look at moving forward. Thanks for all your help makes a difference when you know what I am going through.

 

[Dom11]

Hello @Debby11 (and @Dom11), Debby nice to hear from you again - albeit that you currently have a problem with stubbornly high BG.

Several things have emerged from this thread that have caught my attention. The first is that you are still waiting for a referral to a Hospital Diabetes Team: that is, in my opinion, scandalous and a nonsense. As a T3c after a total pancreatectomy you should have been referred either to the Endocrinology team within the Hospital that did your pancreatectomy or if that Hospital was not your closest option then the referral should be to somewhere that is geographically more convenient for you AND that referral should have been part of your discharge paperwork after your operation. Are you sure that this referral doesn't already exist and you have lost sight of that bit of procedure? I lived in Bucks, but had my op in Oxford and my discharge paperwork was copied to both my GP and to my local hospital in Bucks; I had secured a new appointment with my GP for the day after my discharge, to establish what the Practice was going to help me with and I phoned my local Hospital Diabetes Department and got a face to face appointment with a Diabetes Specialist Nurse (DSN) 2 days after discharge. For the next 11 months I had a regular email dialogue with that DSN - who studied scans of my logbook and helped me tweak my (then) fixed insulin doses. If I were in your present situation I would phone your local Hospital Diabetes Team and explain that you had a total panc'y less than 4 months ago and now you seem to have "fallen through the cracks", not been seen or monitored by anyone since the surgery and you are now in some diiculty with unacceptably high BG. Then press for someone to ring you back and pick up from there. Debby, you should not be so unsupported after such major, life-changing surgery. Are you still under the watch and care of the Surgical Dept (HPB for me) that did your Surgery? If so phone there and ask for help with your Diabetes - I'm sure that they would promptly refer you to that Hospital Endocrinology Team.

I 've just read thatvyou are now carb counting, but don't know how to apply that knowledge. As suggested the Bertie online course should help you grasp some of that. I suggest you still press for a face to face DAFNE course since this will definitely supplement what you have gleaned so far from others and Bertie online. DAFNE covers a lot of other things and informs you particularly about the "judgements" you might make when altering various dose ratios, as well as when it's best to adjust basal (Toujeo) or bolus (NovoRapid); such decisions can be both subtle and not always intuitive. The face to face DAFNE introduces you to others who are insulin dependent and allows the opportunity to compare notes! I suggest don't fret if DAFNE takes 12 months plus to happen, there is a benefit from having learnt a certain amount before attending, then your questions can become quite specific for you; ALSO as a T3c your insulin dependency is not quite the same as T1s and I recognised that some of the things we were being told did NOT apply to me, I was able to check I'd got that right and reassure myself I was keeping up with the intensive learning going on.

The normal sequence is to try and get your basal right and keeping you in a good BG status throughout a 24 hr day, compensating for all the usual things that go on in your body. These are heightened for us with insulin dependency by our liver releasing glucose from its store in response to various hormones, such as adrenaline or cortisol; there are other body responses that trigger these glucose releases. Then somewhat worsened by not having the other pancreatic hormones that exist for most other T1s in their early years. The next step is to match the extra bolus insulin we need against the food and activity we are introducing into our day, additional to that going on in the background. Currently if you are on fixed doses of NovoRapid you have to do that the other way round and match your food to those fixed insulin doses. This is possible, but has "put the wagon before the horse" and is constraining or contradictory to living a normal life; it means very fixed meals at very precise times and removes any possible spontaneity to a lifestyle. By counting the carbs you are expecting to eat, along with some adjustment for the day's activity and exercise levels (things that we learn to do fairly instinctively) you take a dose of insulin measured to match your needs

As touched on earlier in this thread, your particular form of Diabetes is far too complex to be within the skills of a General Practice. With no pancreas, not only have you lost your insulin production, but:

You no longer make Vitamins A, D, E and K; do you take supplementary vitamins?​

​

You no longeer have the hormone Glucagon, which normally the brain uses as its messenger when the brain needs to tell the liver to open the liver's glucose store; without this normally inbuilt balancing mechanism you can be liable to very rapid drops in BG and is something you need to be aware of and ready to manage yourself. I have my Libre low alert set fairly high (in the 5s) and once that has alerted me I am very watchful through my Libre and ready to fend off a possible future hypo with a small snack, such as a biscuit.​

​

You've also lost the hormone somostatin which supplements some balancing between excess glucose and excess insulin, switching either off or down if necessary.​

​

And of course you've lost 95% of your digestive enzymes, which is why we take Creon. Have you got the measure of that yet, its more an art than a science? If you are not properly digesting all that you eat, apart from wind, bloating, discomfort and possible loose or compacted faeces the additional outcome is that carb counting is compromised so insulin dosing is affected.​

​

So there is a lot to get to grips with and YET it isn't as bad as I might make it seem. Now that I'm 3 yrs in I find I do a lot of my D management subconciously. The challenging part for me is dealing with the several associated medical problems that have arisen, eg the Oncology follow-ups that brought about the need for my total panc'y, the urology (prostate) problem that seems to have been triggered by the trauma of that major surgery, the hernias that recur on my incision and my ongoing bowel issues - but I've been diagnosed with Ulcerative Colitis since 2003 so this is my 'normal'!

Returning to your overly high BG: personally I would try increasing my basal by 2 units and monitor closely - keeping my hypo response stuff very handy in case those 2 units are too much. I'd set my Libre low alarm into the mid 5s and let the tech help me monitor; once that threshold has been crossed, I'd eat a small biscuit and reset that low alert to, say 4.8/4.9 and monitor. If I'm still falling I'd repeat with a similar small biscuit and reset my low alert to 4.4/4.5. Then a jelly baby (its faster). Those alert settings will depend on how close my Libre is to actual BG; I personally don't get a great correlation between Libre and actual - so I'm constantly mentally juggling (yet another niggle about managing D!).

Let us know how you are getting on. Do, please, ask questions; none are stupid, we've all been through this meleé of uncertainty and confusion and there is loads of experience waiting to be tapped from forum members. Do get ketone testing prescribed; your GP and the Hospital that discharged you have seriously failed you by not doing this from the outset and do chase any route to get yourself covered by a DSN, AS SOON AS POSSIBLE.

Lots in here, I appreciate probably a bit overwhelming! But hopefully some of this will help and I've included Dom so that he might be able to help pick out the immediately useful stuff - sometimes 2 minds are better than one. At the end of the day, you have the problem and only you can judge what you can implement. Good luck.

Thanks for this, very useful information, appreciate your time

 

[Proud to be erratic]

Hi thanks for all your valuable information I do feel as if I have been cast adrift a bit.

Well I certainly think you have been cast adrift and I think its wrong. Clearly I was very lucky with my initial start.

Some of the information you have told me is all new to me , getting any details from the diabetes nurse at my local doctors is hard work and I haven’t seen my local doctor since discharge.

As I said, its not actually very reasonable to expect any true help from your Surgery, other than moral support. T1s are about 10% of the UK D population and the NICE Guidelines expressly say T1s should be referred to Hospital Specialist Teams, so GPs and their Surgeries aren't familiar with T1 management. You and I are a tiny percentage of the T1 D population so even Specialist Teams aren't particularly familiar with our needs. Despite the help from my Bucks DSN for my first c.12 months, I came to realise that she simply didn't understand just how difficult it can be for a T3c with no panc'y. I was lucky that my Surgical Team, during a review realised that I was not actually being well supported for my D and they referred me to their in-house Endocrinology Team who are one of the few Centres in England trialling pancreatic transplants and who do understand! I get reviews every 5 months, face to face, with the Head of that Team. He has offered ideas for my improvement (eg different insulin to carb ratios and different pre bolus timings) allowed me to go away and try these changes then gracefully accepted when I've reported back that some things haven't worked for me and he has then suggested other things to try. He also explains 'what and why'. After 3+ years I'm now keen to try getting a pump and he has explained that I don't really meet the NICE criteria, but he hasn't dismissed the idea completely. So that is my current "work in progress". My overall Time in Range (TIR) is c.70% - which is deemed OK, but it is a full time job for me to achieve that. My case for a pump revolves around blatant intrusion into my quality of life and consequent stress.

I did have a follow up with my surgeon a few weeks ago but she is based at Blackburn hospital and as I live in Blackpool was referred to our local hospital. I get most of my information off the internet

Personally I am very cautious about the general Internet info and also social media sites like Facebook. Too many people out there peddling their 'guaranteed solution' or 'only right way'; also unless its UK origin, its difficult anyway, since other national practices aren't necessarily compatible with what our NHS supports. That doesn't mean that UK is the 'only' way or even the right way - but I need the free prescriptions and so must work within the NICE approved process for best NHS prescribing.

That said I have leant heavily on this forum for advice and knowledge and like the fact that it's not too opinionated, with good framework rules to regulate those who might get overly domineering about what we must do rather than what we might try.

There are few 'Rights and Wrongs' in managing your own D. A technique that works for one person may not be at all suitable for someone else and this applies to every facet, be that insulin ratios, types of insulin, timings between bolus taking and eating or timings for response to insulin taken. With food types, porridge for example might be a great food for one person and thoroughly unpredictable for another, causing chaos with bolus calculating.

so I am definitely going to ask questions based on what you have told me…vitamins , keto testing , carb counting etc. I am still using the same dose settings I was discharged with no wonder I am up and down.

Did your discharge paperwork provide any rationale for the dose settings that you are currently using. For example for my weight, build, age and presumably sex, I was started on 1 unit of NovoRapid for every 10 gms of carbs. I moved away from those settings until I did my DAFNE course which has taken me back to that 1:10, but with a correction factor instead of a varying ratio. It boils down to the same thing, but looked at a bit differently. I found for my lifestyle I needed 1:8 for breakfast, 1:10 for my small lunches and 1:12 for my evening meal. My basal was a mystery; I was on Levermir am and pm. But I'm now on a very long-lasting Tresiba once daily and that works very well - for me. And I understand how to adjust my basal when necessary!!

Activity and exercise cause a lot of fluctuation and of course post op I was quite limited in what I could do. As I got stronger I walked and cycled further, did more in the garden and generally pushed at the boundaries of what I could (or should) do. I can sometimes need to apply a 50% reduction in bolus doses after a full and busy day. This is still an art I have not got the full measure of. But just knowing that exercise can need such large adjustments helps me recognise when I need to apply large bolus reductions or explain why I otherwise unexpectedly go very low.

And that is part of the daily challenge: by no means does every day go smoothly or according to plan. When it does I pat myself on the back. But when it doesn't go well or right, I try to identify why, learn a lesson if I can and if I can't fathom why I simply park that and move on. I used to dwell on bad days much more than I do now; They happen, I can't put the clock back and the only person I need to apologise to is myself - which is an extra waste of my precious time.

I will re read all you have told me and look at moving forward. Thanks for all your help makes a difference when you know what I am going through.

If there is something specific you'd like further help with just ask, please. Good luck.

 

[SB2015]

Hi @Debby11
You have been given such a comprehensive response by @Proud to be erratic and I would echo his advice that each day is different so be proud on days that work out well, and use the other days to try to work out what has happened and why.
I am another person that has different carb ratios through the day. These are not fixed and will change over time. I also find that if I eat a very large meal I need to up my ratio/bolus.

Keep the questions coming.

 

[Debby11]

Hello @Debby11 (and @Dom11), Debby nice to hear from you again - albeit that you currently have a problem with stubbornly high BG.

Several things have emerged from this thread that have caught my attention. The first is that you are still waiting for a referral to a Hospital Diabetes Team: that is, in my opinion, scandalous and a nonsense. As a T3c after a total pancreatectomy you should have been referred either to the Endocrinology team within the Hospital that did your pancreatectomy or if that Hospital was not your closest option then the referral should be to somewhere that is geographically more convenient for you AND that referral should have been part of your discharge paperwork after your operation. Are you sure that this referral doesn't already exist and you have lost sight of that bit of procedure? I lived in Bucks, but had my op in Oxford and my discharge paperwork was copied to both my GP and to my local hospital in Bucks; I had secured a new appointment with my GP for the day after my discharge, to establish what the Practice was going to help me with and I phoned my local Hospital Diabetes Department and got a face to face appointment with a Diabetes Specialist Nurse (DSN) 2 days after discharge. For the next 11 months I had a regular email dialogue with that DSN - who studied scans of my logbook and helped me tweak my (then) fixed insulin doses. If I were in your present situation I would phone your local Hospital Diabetes Team and explain that you had a total panc'y less than 4 months ago and now you seem to have "fallen through the cracks", not been seen or monitored by anyone since the surgery and you are now in some diiculty with unacceptably high BG. Then press for someone to ring you back and pick up from there. Debby, you should not be so unsupported after such major, life-changing surgery. Are you still under the watch and care of the Surgical Dept (HPB for me) that did your Surgery? If so phone there and ask for help with your Diabetes - I'm sure that they would promptly refer you to that Hospital Endocrinology Team.

I 've just read thatvyou are now carb counting, but don't know how to apply that knowledge. As suggested the Bertie online course should help you grasp some of that. I suggest you still press for a face to face DAFNE course since this will definitely supplement what you have gleaned so far from others and Bertie online. DAFNE covers a lot of other things and informs you particularly about the "judgements" you might make when altering various dose ratios, as well as when it's best to adjust basal (Toujeo) or bolus (NovoRapid); such decisions can be both subtle and not always intuitive. The face to face DAFNE introduces you to others who are insulin dependent and allows the opportunity to compare notes! I suggest don't fret if DAFNE takes 12 months plus to happen, there is a benefit from having learnt a certain amount before attending, then your questions can become quite specific for you; ALSO as a T3c your insulin dependency is not quite the same as T1s and I recognised that some of the things we were being told did NOT apply to me, I was able to check I'd got that right and reassure myself I was keeping up with the intensive learning going on.

The normal sequence is to try and get your basal right and keeping you in a good BG status throughout a 24 hr day, compensating for all the usual things that go on in your body. These are heightened for us with insulin dependency by our liver releasing glucose from its store in response to various hormones, such as adrenaline or cortisol; there are other body responses that trigger these glucose releases. Then somewhat worsened by not having the other pancreatic hormones that exist for most other T1s in their early years. The next step is to match the extra bolus insulin we need against the food and activity we are introducing into our day, additional to that going on in the background. Currently if you are on fixed doses of NovoRapid you have to do that the other way round and match your food to those fixed insulin doses. This is possible, but has "put the wagon before the horse" and is constraining or contradictory to living a normal life; it means very fixed meals at very precise times and removes any possible spontaneity to a lifestyle. By counting the carbs you are expecting to eat, along with some adjustment for the day's activity and exercise levels (things that we learn to do fairly instinctively) you take a dose of insulin measured to match your needs

As touched on earlier in this thread, your particular form of Diabetes is far too complex to be within the skills of a General Practice. With no pancreas, not only have you lost your insulin production, but:

You no longer make Vitamins A, D, E and K; do you take supplementary vitamins?​

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You no longeer have the hormone Glucagon, which normally the brain uses as its messenger when the brain needs to tell the liver to open the liver's glucose store; without this normally inbuilt balancing mechanism you can be liable to very rapid drops in BG and is something you need to be aware of and ready to manage yourself. I have my Libre low alert set fairly high (in the 5s) and once that has alerted me I am very watchful through my Libre and ready to fend off a possible future hypo with a small snack, such as a biscuit.​

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You've also lost the hormone somostatin which supplements some balancing between excess glucose and excess insulin, switching either off or down if necessary.​

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And of course you've lost 95% of your digestive enzymes, which is why we take Creon. Have you got the measure of that yet, its more an art than a science? If you are not properly digesting all that you eat, apart from wind, bloating, discomfort and possible loose or compacted faeces the additional outcome is that carb counting is compromised so insulin dosing is affected.​

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So there is a lot to get to grips with and YET it isn't as bad as I might make it seem. Now that I'm 3 yrs in I find I do a lot of my D management subconciously. The challenging part for me is dealing with the several associated medical problems that have arisen, eg the Oncology follow-ups that brought about the need for my total panc'y, the urology (prostate) problem that seems to have been triggered by the trauma of that major surgery, the hernias that recur on my incision and my ongoing bowel issues - but I've been diagnosed with Ulcerative Colitis since 2003 so this is my 'normal'!

Returning to your overly high BG: personally I would try increasing my basal by 2 units and monitor closely - keeping my hypo response stuff very handy in case those 2 units are too much. I'd set my Libre low alarm into the mid 5s and let the tech help me monitor; once that threshold has been crossed, I'd eat a small biscuit and reset that low alert to, say 4.8/4.9 and monitor. If I'm still falling I'd repeat with a similar small biscuit and reset my low alert to 4.4/4.5. Then a jelly baby (its faster). Those alert settings will depend on how close my Libre is to actual BG; I personally don't get a great correlation between Libre and actual - so I'm constantly mentally juggling (yet another niggle about managing D!).

Let us know how you are getting on. Do, please, ask questions; none are stupid, we've all been through this meleé of uncertainty and confusion and there is loads of experience waiting to be tapped from forum members. Do get ketone testing prescribed; your GP and the Hospital that discharged you have seriously failed you by not doing this from the outset and do chase any route to get yourself covered by a DSN, AS SOON AS POSSIBLE.

Lots in here, I appreciate probably a bit overwhelming! But hopefully some of this will help and I've included Dom so that he might be able to help pick out the immediately useful stuff - sometimes 2 minds are better than one. At the end of the day, you have the problem and only you can judge what you can implement. Good luck.

Hi once again thanks for the information. I didn’t know about the vitamins and I am looking at carbs more .
The creon are going ok more compacted then loose if I am being honest , its remembering to take them every time i eat.
I managed to speak to a diabetic nurse at my surgery and have a follow up appointment in a couple of weeks, I will make a list of questions . Once again thanks for your help.

 

[Proud to be erratic]

Hi once again thanks for the information. I didn’t know about the vitamins and I am looking at carbs more .
The creon are going ok more compacted then loose if I am being honest , its remembering to take them every time i eat.
I managed to speak to a diabetic nurse at my surgery and have a follow up appointment in a couple of weeks, I will make a list of questions . Once again thanks for your help.

You are most welcome.

I sometimes also forget and I invariably know a few hours later! But I'm never sure if my Ulcerative Colitis is finding an opportunity to remind me its still there in the background. I happen to love prunes, dates and figs so these feature prominently in my breakfasts. But compacted faeces are essentially a consequence of insufficient fibre AND moisture. So I have a large glass of water (or very diluted squash) with every meal to " wash down" the Creon.

Do keep in mind that your Surgery Nurse may not be too well informed about insulin dependency, never mind the peculiarities of no panc'y. Its not their fault, most insulin dependents aren't seen by the Practice.

How have you got on with bringing your BG back down?