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Type 3c - pancreatitis

M

Megdog

New Member
Relationship to Diabetes
Type 3c
Pronouns
He/Him
Moderator note: this thread was initially a reply to another post here, but was felt to deserve a thread of its own. https://forum.diabetes.org.uk/boards/threads/type-3c-diabetics.118085/

Hi,
Was diagnosed with chronic pancreatitis six weeks ago - having been admitted to hospital with ketoacidosis - consequently am Type 3C diabetic and PEI. I inject Humulin I twice daily (16 and 14) and have to take Creon with every meal and snack.
Obviously still very early days, and whilst my blood sugar is starting to stabilise it’s not quite there yet - it has caused havoc with my eyesight, my glasses prescription changing from -3.75 to -1.5 although my optician tells me it is likely to revert to my old prescription. I have also developed itchy hive-like rash across the top of my legs and have had it now over three weeks, don’t know if this could be related to my diabetes and/or insulin, diabetic nurse says unlikely (although she hasn’t seen the rash) but various sites on the internet say it is possible, and it does seem rather coincidental that I get this for the first time in my life three weeks after starting on insulin. I inject myself in my tummy, so not a direct reaction to the injection itself. Don’t want to waste my GP’s time so haven’t been to see him about it. My mental health as always been challenging, I am prone to clinical depression (which has now been chronic for over two years, and have been off work since) and have emotional dysfunction, and am really starting to feel hopeless and that I have lost control over the small part of my life where I previously did have some element of control. When I was discharged from hospital I was also prescribed fast acting insulin to take before meals, but I haven’t started taking this as yet (on the advice of my diabetic nurse, as she says it may be overwhelming for me), so I don’t count carbs, and don’t know if I’m even supposed to in time - I just try to eat as healthily as I can, relying on my Libre 2 Plus for my blood sugar - I have a finger prick monitor as well, but I hate using that - and taking Creon, but the amount I’ve been told to take 25000 x 3 a day with meals, and 10000 with snacks. No idea if it’s working or the right amount, indeed, whether the dosage will change over time. Additionally I take omeprazole each morning.
As I said, it seems I have lost control; a slave to obsessively looking at my phone for my blood sugar levels, even after 6 weeks - it now seems to have settled down to be between 4 and 12 (mostly under 9 with a couple of peaks during the day) varying through the day (when I was admitted to hospital, it was around 40), as I understand it should. But even after six weeks, injecting insulin hasn’t become routine, and I often only remember half an hour to hour after when I should have done so (my times are 10am and 10pm) but again, no real idea whether this will change, whether it’s the optimal times etc. The same with the Creon, which I don’t particularly like taking. So, my life seems ruled by my mental health and my new diabetes, with not much else. And really struggling to understand how to manage it more effectively, so it becomes a routine in my life, rather than taking over it. Does it get easier with time? In hospital my consultant assumed I had type 1 given the ketoacidosis, but the chronic pancreatitis was picked up on a CT scan - I’ve had a follow-up endoscopy and biopsies (including testing for coeliac) and am awaiting something called ERCP, which I can’t have sedation for (as I never did with my endoscopy, just some awful so-called banana tasting spray) as I have no one who can collect me from hospital, which apparently is a necessity, they won’t even allow me to get a taxi home. Worried about the ERCP as apparently more painful and much longer than my endoscopy.
Really do apologise for the long post - especially as it’s my first - but really don’t know where to go from here…or how things are expected to develop.
Just as background, I’m a 60 year old guy.
 
Last edited by a moderator:
Sorry just to add that merely the term ‘pancreatitis’ scared the hell out me when first diagnosed, as my mum died of acute pancreatitis (causing something called toxic shock) when she was only 54. My consultant did tell me that the two aren’t related, so not to worry about it - although, not entirely sure I believed, or even still believe, her. It’s not a worry to the extent it impacts any of the above, but just an added ‘challenge’.
 
Megdog said:
Obviously still very early days, and whilst my blood sugar is starting to stabilise it’s not quite there yet - it has caused havoc with my eyesight, my glasses prescription changing from -3.75 to -1.5 although my optician tells me it is likely to revert to my old prescription. I have also developed itchy hive-like rash across the top of my legs and have had it now over three weeks, don’t know if this could be related to my diabetes
Click to expand...

Welcome to the forum @Megdog

Yeah diabetes can wreak havoc with your eyesight. :(

The slowly increasing BGs change the pressure in the eye over time (and the body adapts), but then when treatment starts, the osmotic pressure (I think?!) normalises, and the brain takes a while to recalibrate.

Might the rash at the tops of your legs be ‘jock itch’ an infection like athletes foot / thrush, which can thrive in high BG environments that you may have had to offer until recently?
 
everydayupsanddowns said:
Welcome to the forum @Megdog

Yeah diabetes can wreak havoc with your eyesight. :(

The slowly increasing BGs change the pressure in the eye over time (and the body adapts), but then when treatment starts, the osmotic pressure (I think?!) normalises, and the brain takes a while to recalibrate.

Might the rash at the tops of your legs be ‘jock itch’ an infection like athletes foot / thrush, which can thrive in high BG environments that you may have had to offer until recently?
Click to expand...
Thank you for the welcome and your reply. It looks more like ‘hives’, although I’m only going by online pictures as I’ve never had it before. It does seem to blister though as per descriptions of hives, and if pressed, the 'raised bumps’ whiten. It’s also kind of the top of my thigh rather than my groin area. I was going to add a photo, but didn’t want to put anyone off eating, but really, it’s hard to capture on my phone as it’s much redder and inflamed than it appears in a photo. As I said, haven’t wanted to waste my GP’s time, but if it doesn’t clear up this week, I’ll make an appointment to see my doctor. Was just wondering if anyone had ever experienced something similar. Again, thank you.
 
Megdog said:
But even after six weeks, injecting insulin hasn’t become routine, and I often only remember half an hour to hour after when I should have done so (my times are 10am and 10pm) but again, no real idea whether this will change, whether it’s the optimal times etc. The same with the Creon, which I don’t particularly like taking. So, my life seems ruled by my mental health and my new diabetes, with not much else. And really struggling to understand how to manage it more effectively, so it becomes a routine in my life, rather than taking over it. Does it get easier with time?
Click to expand...

Ah I’m so sorry you are having such a tough time. And I think many of us with T1 will recognise the feelings you are describing.

It is a huge adjustment. And it can be completely overwhelming, especially in the early weeks and months (and then perhaps again further down the line).

But YES. It will get easier. It will become more routine. You will build up knowledge of how your own, peculiar, contrary, contradictory, and downright annoying diabetes behaves (at least most of the time!). In the end you’ll end up being the no.1 world expert in your diabetes - and you still won’t really understand it half the time! But you will know how to manage it, and live a full life around it.
 
@Megdog Welcome to the forum
If it is more like hives then I think that is an allergic reaction and might respond to Antihistamines which can be bought over the counter. Worth a try. I think that there are very rare instances of people having an allergic reaction to different insulins and just because you inject in your tummy doesn't mean that the reaction can't be elsewhere. Someone I knew developed an allergy to raspberries and he came out in hives on his back and thighs, when you would kind of expect it to show in the mouth and throat if it was a food allergy. It took ages to figure out the cause because initially assumed it was a contact thing, perhaps with soap powder or shower gel.
 
Thank you for all the replies and advice. It feels ‘comforting' that I’m not alone in my struggles trying to adjust to my life changes, but especially with my mental health, it’s all incredible challenging. And, really, this is just the start, when I’m still doing the basic twice a day Humulin I - dread to think what will happen if I have to inject fast-acting insulin as well, and balancing that with food intake. Sometimes, I hate the thought of the twice daily injections, they even appear to hurt, when the reality is that it’s just pretty much nothing at all, and it’s only in the past week or so, I begun to even feel them. Probably my mind playing tricks...Thanks again to everyone.
 
Welcome to the forum @Megdog
Appreciate as this is very new it involves a big period of adjustment and a lot of attendant worry.I suggest you raise any specific concerns with your medical tram and sure you will have lots of questions.
Your eye issues should resolve themselves as you body adjusts to the medication and gets your BG under control but your other symptoms may or may nit be related to you diabetes so please try and keep an open mind.
I can promise you things will get better over time but concentrate on getting one challenge such as insulin management manageable at a time and then move onto another aspect.
Trying to balance all the new challenges at a time is very draining but you will see improvements in time and be much more optimistic about your future.
BW
 
Hello @Megdog, welcome from me also. Really sorry to read about your circumstances: your pancreatitis, your PEI and of course now your diagnosis of T3c. You gave us a generous introduction, my apologies for my rather "full" response below!

As @Wendal so rightly says this is a time of great change for you, with so many new things to manage and I agree with him it's best to try and deal with one challenge at a time - as much as you possibly can. Of course several things are interwoven and each can affect your Blood Glucose (BG).

That said your Hives may or may not be caused by your Humulin i insulin (I have no medical training; any speculation by me would be unhelpful here). You really do need to take that back to your GP to get it properly diagnosed and treated. BUT, even if the Hives are not caused by your Humulin, the rash could cause raised BG and thus further complicate your BG management. If they are caused by your insulin, then this could be sufficiently specialised that you ought to be referred back to your Diabetes consultant - since the Humulin might need something different; there are alternative insulins. By definition GPs are General Practicioners and are unlikely to be experts in insulin prescribing.

You mention in your first post a Diabetes Nurse. I would like to understand if this Nurse is a Diabetes Specialist Nurse (DSN) from the Hospital or the Nurse in your Surgery who looks after those patients with diabetes who come directly under GPs. This latter nurse is often called the Diabetes Nurse in a Surgery, but is NOT a Specialist in Diabetes management for patients who are insulin dependent - like yourself @Megdog. This can be a very important distinction. In accordance with NICE Guidance GPs look after patients with Type 2 diabetes, the vast majority of whom start off by being treated with oral medications. Patients diagnosed Type 1 are looked after by Hospital based teams and their treatment will need insulin, which is a specialised treatment outside of General Practice. Your T3c treatment has rapidly gone past any treatment by oral meds alone and your insulins have come from Consultant recommendations. Your GP may write the repeat prescriptions, but in response to Consultant direction.

You already have the slower Humulin i insulin, known generically as a basal insulin, and your Consultant has recommended that you start a faster (bolus) insulin for meals. Which Nurse has advised you to delay starting that 2nd insulin? If its the GP Surgery Nurse, has advice been sought from your Hospital Team? Do you have any guidance for size of doses for this faster mealtime insulin?

Your Humulin i is a background insulin; the timings for taking it are not normally super critical, but it is better to keep to your 10am, 10pm regime for now. Provided your CGM is registered to link back to your Hospital (If Libre 2, then through a web based portal known as LibreView; if Dexcom One+, then through their portal called Clarity). From that data your Hospital Team can look at the results and tweak timings and doses, to refine getting the insulin to match your metabolism and glucose releases.

Your Creon quantitiess to meet your PEI needs can vary hugely from person to person. There is no easy way to do this - trial and learning is necessary by you. You need to take a close interest in your bowel activity, sorry! Google Creon's website and they provide guidance, including pictures showing different stool colours and composition. There is an International shortage of Creon at present, so some of us have had difficulty in getting resupplies. Do make sure you order your repeat prescriptions for Creon in good time.

As I understand your ERCP (and I have zero experience of managing pancreatitis) this is a procedure leading to the clearance of blockages which worsen pancreatitis. Since you have no one who can take you to Hospital for this ERCP and someone [who?] [why?] has said you can't take a taxi - then someone must authorise and organise Hospital transport: an ambulance or Hospital taxi. The ERCP seems pretty fundamental to verifying your treatment path. Is your Hospital Team taking the lead on getting you booked for the ERCP and co-ordinating that transport? If you are unclear about how the ERCP will progress, I would be politely pestering your Hospital Team for information. My experience has been that I have to take some ownership of my treatment for my illness and if I sit back and wait my follow up seems to evaporate. If I were in your position I would contact your Consultant's Secretary (contact details are normally findable on the Consultant's report) and ask. If necessary I would phone and ask for an email address, then write asking for clarification of when and who is co-ordinating the transport. If that should be you, how do you co-ordinate that transport?

Your mental health, @Megdog is a most important part of you regaining medical stability and best management of your new status as an insulin dependent T3c. We none of us expect to "control" our diabetes but rather settle for good BG management. There are too many things going on for each of us. Aspiring for good management and acceptance that there is no perfect control is more realistic for our expectations. This is pragmatic and helps ease the anxieties and frustrations that each of us encounter in different ways at different times.

I think that this is enough for now. Do ask questions, no question is stupid. We've all been though this process of a potentially frightening diagnosis and so much seemingly complicated processes. It does get easier, I promise. It does take time.

I'm going to suggest to our Forum Administrator Mike, @everydayupsanddowns, that your post and the replies are moved into a new thread, ideally with "pancreatitis" added to the Type 3c title. The original post from @cherryvalley is a sufficiently different form of T3c from yours after her total pancreatectomy. You have a number of complexities that probably need different considerations. So your thread might take us in subtly different directions.
 
Proud to be erratic said:
Hello @Megdog, welcome from me also. Really sorry to read about your circumstances: your pancreatitis, your PEI and of course now your diagnosis of T3c. You gave us a generous introduction, my apologies for my rather "full" response below!

As @Wendal so rightly says this is a time of great change for you, with so many new things to manage and I agree with him it's best to try and deal with one challenge at a time - as much as you possibly can. Of course several things are interwoven and each can affect your Blood Glucose (BG).

That said your Hives may or may not be caused by your Humulin i insulin (I have no medical training; any speculation by me would be unhelpful here). You really do need to take that back to your GP to get it properly diagnosed and treated. BUT, even if the Hives are not caused by your Humulin, the rash could cause raised BG and thus further complicate your BG management. If they are caused by your insulin, then this could be sufficiently specialised that you ought to be referred back to your Diabetes consultant - since the Humulin might need something different; there are alternative insulins. By definition GPs are General Practicioners and are unlikely to be experts in insulin prescribing.

You mention in your first post a Diabetes Nurse. I would like to understand if this Nurse is a Diabetes Specialist Nurse (DSN) from the Hospital or the Nurse in your Surgery who looks after those patients with diabetes who come directly under GPs. This latter nurse is often called the Diabetes Nurse in a Surgery, but is NOT a Specialist in Diabetes management for patients who are insulin dependent - like yourself @Megdog. This can be a very important distinction. In accordance with NICE Guidance GPs look after patients with Type 2 diabetes, the vast majority of whom start off by being treated with oral medications. Patients diagnosed Type 1 are looked after by Hospital based teams and their treatment will need insulin, which is a specialised treatment outside of General Practice. Your T3c treatment has rapidly gone past any treatment by oral meds alone and your insulins have come from Consultant recommendations. Your GP may write the repeat prescriptions, but in response to Consultant direction.

You already have the slower Humulin i insulin, known generically as a basal insulin, and your Consultant has recommended that you start a faster (bolus) insulin for meals. Which Nurse has advised you to delay starting that 2nd insulin? If its the GP Surgery Nurse, has advice been sought from your Hospital Team? Do you have any guidance for size of doses for this faster mealtime insulin?

Your Humulin i is a background insulin; the timings for taking it are not normally super critical, but it is better to keep to your 10am, 10pm regime for now. Provided your CGM is registered to link back to your Hospital (If Libre 2, then through a web based portal known as LibreView; if Dexcom One+, then through their portal called Clarity). From that data your Hospital Team can look at the results and tweak timings and doses, to refine getting the insulin to match your metabolism and glucose releases.

Your Creon quantitiess to meet your PEI needs can vary hugely from person to person. There is no easy way to do this - trial and learning is necessary by you. You need to take a close interest in your bowel activity, sorry! Google Creon's website and they provide guidance, including pictures showing different stool colours and composition. There is an International shortage of Creon at present, so some of us have had difficulty in getting resupplies. Do make sure you order your repeat prescriptions for Creon in good time.

As I understand your ERCP (and I have zero experience of managing pancreatitis) this is a procedure leading to the clearance of blockages which worsen pancreatitis. Since you have no one who can take you to Hospital for this ERCP and someone [who?] [why?] has said you can't take a taxi - then someone must authorise and organise Hospital transport: an ambulance or Hospital taxi. The ERCP seems pretty fundamental to verifying your treatment path. Is your Hospital Team taking the lead on getting you booked for the ERCP and co-ordinating that transport? If you are unclear about how the ERCP will progress, I would be politely pestering your Hospital Team for information. My experience has been that I have to take some ownership of my treatment for my illness and if I sit back and wait my follow up seems to evaporate. If I were in your position I would contact your Consultant's Secretary (contact details are normally findable on the Consultant's report) and ask. If necessary I would phone and ask for an email address, then write asking for clarification of when and who is co-ordinating the transport. If that should be you, how do you co-ordinate that transport?

Your mental health, @Megdog is a most important part of you regaining medical stability and best management of your new status as an insulin dependent T3c. We none of us expect to "control" our diabetes but rather settle for good BG management. There are too many things going on for each of us. Aspiring for good management and acceptance that there is no perfect control is more realistic for our expectations. This is pragmatic and helps ease the anxieties and frustrations that each of us encounter in different ways at different times.

I think that this is enough for now. Do ask questions, no question is stupid. We've all been though this process of a potentially frightening diagnosis and so much seemingly complicated processes. It does get easier, I promise. It does take time.

I'm going to suggest to our Forum Administrator Mike, @everydayupsanddowns, that your post and the replies are moved into a new thread, ideally with "pancreatitis" added to the Type 3c title. The original post from @cherryvalley is a sufficiently different form of T3c from yours after her total pancreatectomy. You have a number of complexities that probably need different considerations. So your thread might take us in subtly different directions.
Click to expand...
Thank you for your most considered and helpful reply. My reference to ‘diabetic nurse’ was to the team at the hospital - I have never seen anyone at my GP, doctor, nurse or otherwise, in relation to my chronic pancreatitis and diabetes - my insulin, Libre 2 Plus, needles, testing strips, Creon etc all being on repeat prescription with my pharmacy via an app called ‘Healthera’. Everything has been managed by the hospital, including my first eye screening, my endoscopy and, indeed ERCP, although I am still awaiting the appointment, albeit I was told when I had my endoscopy, I should have had the ERCP first. Thank you for the advice re hospital transport - as I am so overwhelmed (not just with my diabetes but emotional health), I don’t really seem to be in a ‘questioning’ mindset, rather, merely just doing and accepting what I’ve been told. I haven’t seen my consultant since I was discharged from hospital, nor my diabetic nursing team, ‘my’ diabetic nurse rings me weekly but she was on holiday last week, and a replacement wasn’t arranged. Obviously, the hospital is aware of my mental health issues, indeed, when I was in hospital, my consultant asked me if I wanted to see someone from the mental health team re my diabetes, at the time I didn’t, and probably still don’t, as I am awaiting multimodal psychotherapy (very long waiting list) with a focus on psychodynamic therapy; in the meantime, I have been attending emotional dysfunction group sessions, simply as a stop-gap. My mental / emotional health is a lifelong battle, sometimes (indeed for many years) manageable, other times, as over the past couple of years, not. And trying to manage the consequences and medication of my pancreatitis (which can cause considerable pain) and diabetes, has made ‘life’ ever more difficult - really my mental health and diabetes are my life, if that makes sense. Hence, my questions (and concerns) whether it gets easier with time. Agan, thank you so much for your reply. It was very helpful for me.
 
Sorry, forgot to address the faster insulin - upon being discharged from hospital, in my little bags of medication, I was given something called Novorapid 3ml Flexipen, there was no dosage on the discharge note other than ‘1 dose per paper chart’ and ‘to be taken, as required, with meals’. No one discussed medication with me prior to leaving hospital, other than I couldn’t go home until it was ready. And didn’t know what had been prescribed until I got home. It was then I contacted my nurse, as I had no understanding at the time of different types of insulin. Since my diabetic nurse told me not to take it as it would be’ overwhelming’ (that word again!), I never questioned the dose, as I don’t have a ‘paper chart’ and don’t even know what this refers to. It does say on my discharge letter, that my GP should prescribe the Novorapid pen, but he hasn’t, but then he also didn’t prescribe the Creon as he should have, and I had to specifically request that when my nurse was asking whether I was taking it. But at the moment, the advice from my nurse is not to take the faster insulin. But I will ask her about it again when she calls me on Thursday. As I mentioned, my blood sugar has calmed down from its high of 40 when I was in hospital to between 4 and 9, with, usually, a couple of daily peaks around 12 or 13. Not sure if it makes any difference re treatment and support, but I completely forgot to mention that I live in Scotland.
 
Do you drive?
Managing diabetes with insulin is sometimes compared to learning to drive. At first you get into the car and have to consciously think about every single small action, from putting your seat belt on to checking it is out of gear before you start the car, finding first gear, which stalk has the indicators on it, which gear you need and where it is, where the windscreen wipers and lights are and that is without taking into consideration where you want to go and how to get there and the other road users etc. It is an incredibly complicated process with a lot of variables, but gradually over the weeks and months you develop muscle memory and autopilot and you start to do many of these processes without actually thinking about them. Diabetes is like this. You gradually do many of the things automatically, even some of the quite complex things.
I find it kind of mind blowing that I can wake up in the middle of the night from a deep sleep because my low or high alarm is going off, scan my Libre, look at the reading and make a calculation of how many carbs I need to treat that low or how much insulin I need to deal with a high, taking into account how much exercise I have done the previous day and the trends that the Libre is showing and if I was lying on my sensor arm when I woke up, if it might possibly be a compression low and how much basal insulin I injected before bed and come to a decision about what action I need to take, deal with it in the way I have decided and be back to sleep in a matter of minutes without even putting a light on. The fact that my brain has learned to do that on semi autopilot since my diagnosis is really amazing especially as I struggle with decision making in general.
What I am trying to say is that we all found it incredibly overwhelming at first but just like learning to drive a car, you gradually start doing some of the things without actually thinking about them and there are times when many of us can't actually remember if we did an injection half an hour ago and thankfully some of us have pens that we can look at and tell us when we last injected and how much for those "Did I or Didn't I?" moments. I know the carb value of many foods off the top of my head and I can take multiple factors into consideration before I calculate a dose. I am not particularly clever and I was diagnosed at 55yrs old so feel like an old dog learning a whole routine of new tricks, but it is surprising how it just happens.

I would also say that I have suffered with my mental health for decades and in particular depression, stress and anxiety and I still do. Like you, I have spells where I am better and others where I am worse.
This forum and it's wonderful members have been hugely instrumental in helping me cope with my diabetes and get to grips with understanding how to manage it well. As a result my diabetes is not a cause for concern most of the time and in fact it gives me a mental boost that I am able to manage it well.

It sounds like you are doing brilliantly already if you are mostly keeping your levels under 10 with the odd spike up to 12 or 13 and that without yet using your NovoRapid, so in some respects I would perhaps agree with your nurse that there is no point in adding to your feeling of being overwhelmed at this stage when your results are really good already. It is however good that you have the NovoRapid in case you need it at short notice, perhaps if you took ill and needed a correction. Are you keeping it in the fridge for now?
 
So well done, very fast response @Megdog. I'll try to be brief.

Thanks for clarifying you are fully (and rightly in my opinion) under a Consultant and getting the support of a DSN, not a Surgery diabetes Nurse. I'm in England and not at all familiar with Scottish diabetes management processes. They will be broadly as for NHS England, but I think the management and funding is more centralised; so I presume less geographical variability, perhaps.

Since your DSN has advised don't start your bolus yet, he/she will keep your Consultant informed. They have also probably told your GP to not write the prescription just yet. Once a decision is confirmed, NovoRapid is widely prescribed and it will be quick and easy to get some in your fridge to let you get started. It's probably not the most important question for your DSN next Thursday, unless that discussion centres on that next phase - after reviewing how well you are doing so far and what extra tweaks are needed next. I have no idea what 1 dose per paper chart means. In due course you may well need to get clarification, once (if) you move on to bolus insulin. When that happens, ask if you can move from disposable flex pens onto refillable pens that take disposable cartridges. Apart from providing a better long term financial solution, are less damaging to the environnent and the cartridges need less space in the fridge, they allow 1/2 unit doses which provides finer dosing for smaller meals.

It's good that your BG seems to be calming. Less glycaemic variability is very desirable. We use the term "Time in Range" when people have CGM - where above 4 and below 10 are the specific official in range nos. 70% TIR is considered excellent. Modest periods above 10, such as your peaks of 12 or 13, are fine for now. Since your insulin is Humulin i, there is a limit to how much that basal insulin can be tweaked in dose size and timings in order to reduce peaks. You can influence those by choosing slightly lower carb meals or snacks to reduce the potential for peaks OR finding activities and exercise that get the insulin moving and doing it's stuff better. But I suggest don't make drastic changes at this point and keep your DSN informed, then when she analyses your data he/she isn't misled by your introducing large external variations.

In due course you will make changes unilaterally and you will have gained an understanding of what causes what. From that understanding will come the confidence to do your own tweaking.

Thank you for sharing that your mental / emotional health has been a lifelong battle, with mixed results over the years. At least your challenges are medically recognised and they can (probably will) play a part in how your BG behaves. BG behaviiur is complicated and confusing - as much an art in managing it as it is a science. We can come back to that at another time; its early days for just now. Conversely, I can imagine that once you get your own inner feeling of satisfactory BG management, without an expectation of perfect control, this should reflect back onto a less anxious emotional state for your mental health. Hopefully!

All for now, got some errands to do!!
 
rebrascora said:
Do you drive?
Managing diabetes with insulin is sometimes compared to learning to drive. At first you get into the car and have to consciously think about every single small action, from putting your seat belt on to checking it is out of gear before you start the car, finding first gear, which stalk has the indicators on it, which gear you need and where it is, where the windscreen wipers and lights are and that is without taking into consideration where you want to go and how to get there and the other road users etc. It is an incredibly complicated process with a lot of variables, but gradually over the weeks and months you develop muscle memory and autopilot and you start to do many of these processes without actually thinking about them. Diabetes is like this. You gradually do many of the things automatically, even some of the quite complex things.
I find it kind of mind blowing that I can wake up in the middle of the night from a deep sleep because my low or high alarm is going off, scan my Libre, look at the reading and make a calculation of how many carbs I need to treat that low or how much insulin I need to deal with a high, taking into account how much exercise I have done the previous day and the trends that the Libre is showing and if I was lying on my sensor arm when I woke up, if it might possibly be a compression low and how much basal insulin I injected before bed and come to a decision about what action I need to take, deal with it in the way I have decided and be back to sleep in a matter of minutes without even putting a light on. The fact that my brain has learned to do that on semi autopilot since my diagnosis is really amazing especially as I struggle with decision making in general.
What I am trying to say is that we all found it incredibly overwhelming at first but just like learning to drive a car, you gradually start doing some of the things without actually thinking about them and there are times when many of us can't actually remember if we did an injection half an hour ago and thankfully some of us have pens that we can look at and tell us when we last injected and how much for those "Did I or Didn't I?" moments. I know the carb value of many foods off the top of my head and I can take multiple factors into consideration before I calculate a dose. I am not particularly clever and I was diagnosed at 55yrs old so feel like an old dog learning a whole routine of new tricks, but it is surprising how it just happens.

I would also say that I have suffered with my mental health for decades and in particular depression, stress and anxiety and I still do. Like you, I have spells where I am better and others where I am worse.
This forum and it's wonderful members have been hugely instrumental in helping me cope with my diabetes and get to grips with understanding how to manage it well. As a result my diabetes is not a cause for concern most of the time and in fact it gives me a mental boost that I am able to manage it well.

It sounds like you are doing brilliantly already if you are mostly keeping your levels under 10 with the odd spike up to 12 or 13 and that without yet using your NovoRapid, so in some respects I would perhaps agree with your nurse that there is no point in adding to your feeling of being overwhelmed at this stage when your results are really good already. It is however good that you have the NovoRapid in case you need it at short notice, perhaps if you took ill and needed a correction. Are you keeping it in the fridge for now?
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Thank you. Difficult to describe but your positivity towards how I am managing, is ineffably reassuring. And, really, that validation will help me no end. Glad you used a driving analogy and not riding a bike. Yes, I drive, but never ever learnt to ride a bike!
 
Proud to be erratic said:
So well done, very fast response @Megdog. I'll try to be brief.

Thanks for clarifying you are fully (and rightly in my opinion) under a Consultant and getting the support of a DSN, not a Surgery diabetes Nurse. I'm in England and not at all familiar with Scottish diabetes management processes. They will be broadly as for NHS England, but I think the management and funding is more centralised; so I presume less geographical variability, perhaps.

Since your DSN has advised don't start your bolus yet, he/she will keep your Consultant informed. They have also probably told your GP to not write the prescription just yet. Once a decision is confirmed, NovoRapid is widely prescribed and it will be quick and easy to get some in your fridge to let you get started. It's probably not the most important question for your DSN next Thursday, unless that discussion centres on that next phase - after reviewing how well you are doing so far and what extra tweaks are needed next. I have no idea what 1 dose per paper chart means. In due course you may well need to get clarification, once (if) you move on to bolus insulin. When that happens, ask if you can move from disposable flex pens onto refillable pens that take disposable cartridges. Apart from providing a better long term financial solution, are less damaging to the environnent and the cartridges need less space in the fridge, they allow 1/2 unit doses which provides finer dosing for smaller meals.

It's good that your BG seems to be calming. Less glycaemic variability is very desirable. We use the term "Time in Range" when people have CGM - where above 4 and below 10 are the specific official in range nos. 70% TIR is considered excellent. Modest periods above 10, such as your peaks of 12 or 13, are fine for now. Since your insulin is Humulin i, there is a limit to how much that basal insulin can be tweaked in dose size and timings in order to reduce peaks. You can influence those by choosing slightly lower carb meals or snacks to reduce the potential for peaks OR finding activities and exercise that get the insulin moving and doing it's stuff better. But I suggest don't make drastic changes at this point and keep your DSN informed, then when she analyses your data he/she isn't misled by your introducing large external variations.

In due course you will make changes unilaterally and you will have gained an understanding of what causes what. From that understanding will come the confidence to do your own tweaking.

Thank you for sharing that your mental / emotional health has been a lifelong battle, with mixed results over the years. At least your challenges are medically recognised and they can (probably will) play a part in how your BG behaves. BG behaviiur is complicated and confusing - as much an art in managing it as it is a science. We can come back to that at another time; its early days for just now. Conversely, I can imagine that once you get your own inner feeling of satisfactory BG management, without an expectation of perfect control, this should reflect back onto a less anxious emotional state for your mental health. Hopefully!

All for now, got some errands to do!!
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I really appreciate the time and effort in replying to my posts, your experience and insight is invaluable to me. Notwithstanding feeling overwhelmed and a little lost, I can only praise the care I have been given by the NHS (Forth Valley) from my stay in hospital to arranging out-patient appointments for eye screening, endoscopy, albeit still waiting for the ERCP, but, perhaps, awaiting results from the endoscopy biopsies, which I was told would take up to a month. As I mentioned, my prescriptions are managed via the Healthera app (as are my anti-depressants) with my pharmacy, and I can request more of anything I need - obviously, being in Scotland, all my prescriptions are free. So, have a good (indeed over) supply of everything as back-up, ten Humulin I pens in the fridge, 8 Libre 2 Plus - my first prescription after being discharged from hospital felt like Diabetic Christmas. Thank you again for your help and support.
 
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