Ronnie5cakes
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Thank you….
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Type 3c … very erratic BG …. Is this normal?
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Ronnie5cakes
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Just for now….I have attached today’s screenshots…. I’m sitting worrying about why it’s so high… & I have followed the DSN’s regime apart from maybe not having quite enough insulin to cover 1/2 ensure at lunch time…Excellent advice from @martindt1606. Particularly about too much info now can confuse and lead to bad habits. Thus slow steps needed to feel the beneficial foundation for the future.
However, Ronnie, I (like you and Martin) went through that frustration of inadequate guidance and bad assistance, which I attributed to Covid overwhelming my DSN's workload. I subsequently found she was a delightful person but well adrift on my needs after a TP; eventually she became a major liability for me by endorsing, behind my back, my GP's decision to ration my test srips to 4 x daily. After I politely questioned the competence of both my GP and my DSN and got that sorted I knew I had to take ownership of my D if things were ever going to improve.
Also, like you Ronnie I had turned 70, previously enjoyed good health and was outwardly fit and healthy. I just was not ready to be treated like a geriatric, confined to my house by not just D, but by unsatisfactory bowel and bladder control; even time in my garden was challenging. Getting someone willing to address the wider picture needed me to be politely forceful, but also needed some understanding by me of how the NHS worked, how the culture of Specialists thriving in their narrow necked silos could be encouraged to think holistically (and for about a year I came under 6 Specialists in 2 Counties). Ronnie, unlike yourself, I lived within reach of appropriate Specialists at the top of their game and within my reach geographically: my challenge was getting into their Clinics with a GP bunkered down behind a locked door unwilling to see anyone face to face and difficult to even get an email dialogue going about how to get appropriate referrals to the right people.
So YES baby steps and YES be very alert to acquiring a surfeit of information that can distract and dilute how you can make any headway.
However, Ronnie, accepting that only now have you really grasped the need to carb count and now its time to move on from that past frustration: you do now know and BERTIE on line can help with the training for that. So may I suggest this must be one of your vital Baby Steps. Until you've started the counting process, you can't verify if your counts are sensible and your presumed insulin to carbs ratios ar correct. There is some complexity to all of that, but daunting as it might feel, it is doable and there is plenty of help both on this Forum and I used Gary Scheiner's book Think Like a Pancreas as my start point for learning. I refined this after BERTIE and from comments within the Forum.
Note Scheiner early on makes the point that a main meal needs to be at least 30gms of carbs to deflect the body's consequent conversion of proteins and fats into blood glucose. This means at least some bolus for 30 gms carbs, but probably factored down to reflect recent exercise/ activity. 3 x meals at 30 gms carbs is still very much in the low carb world; my typical main meal is 50+, unless I have specifically joined a low carb family meal. But equally my early meals in excess of 100 gms carbs are a thing of the past, for various reasons.
Acquiring a surfeit of useful info is tricky to manage. It is natural to read about something you didn't previously know and to want to hoover that up to store for future use. It is also natural for us well-intentioned Forum members to want to share whatever we think may help you. I can be very guilty of that.
The next Baby step I think that is essential for you is to get your basal dose confirmed as correct first. Wrong basal dose and your bolus is chasing a moving target. Please remind me are you on Lantus? One experiment you could make is to repeat the same breakfast 3 days running and on the 3rd day post bolus by only when you areseeing a clear rise. Clarify if your BG is dropping after that meal because of basal rather than bolus. Normal basal testing processes are to divide the day into 3 bits and fast through 1/3 of a day to see how your basal is doing through those 8 hrs. It means you need 3 days to do this and you can only start an 8 hr fast when your IoB from any bolus has fully dissipated. This process of basal testing is also more usually done by T1s who might still be creating some home grown insulin; but I don't see why it won't work for us with our TPs and nothing home grown.
Final Baby Step, this is very contentious, but try and establish if YOUR DSN has experience of post whipple and TP patients. I assumed my former DSN understood my difficulties, but I was wrong. I don't want to undermine your working relationship with her. But by asking her to explain the rationale for current or future decisions might help sort out what she really understands. My personal hobby horse would be to establish why you aren't on the basal of Tresiba right now. Get that variable fixed and the maths/ algebra /science becomes a little easier. Your age and natural lack of growth hormones lends itself to a very dependable long acting basal. No basal requirement is constant through any 24 hr period. Having a basal that is optimised for the period from bedtime to breakfast can provide safe steady nights. Then the day is managed by food, bolus and activity - regardless of what the ultra long Tresiba basal is bringing to the daytime party.
Meanwhile Ronnie, you and I agree that a face to face would be less demanding than endless writing. An interim solution would be for you to show us 3 x screenshots from your Libre Log book reports of the next 3 days. We will need to know precisely when you took both basal and bolus as well as when you ate a main meal or snack that could alter your daily graph. If you were unduly active ( eg those short walks) when and for roughly how long. From those 3 daily graphs some detective work can be done - and there are some on the Forum who are brilliant that analysis stuff (I'm OK, but know others who are sharper than me in this).
Possibly better to start a new thread for these screenshots seeking the Sherlock Holmes characters and hope we keep our observations focused to just that data; we might not! Digression is a strong point by us!
Lantus (9.30am) & Novorapid used…….kind regards Ron
Judithdalston
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My type 3c was as a result of a routine bile duct unblocking procedure going wrong resulting in septic shock and acute pancreatitis…not given insulin for a few weeks despite GP sending me to A&E twice with diabetic ketoacidosis, so not quite like yours, nor planned , but like you not instructed in what to do re weight loss, appropriate foodstuffs etc. Only since Jan.this year getting somewhere with a diabetic course ( really intended for type 2s but run by 2 hospital diabetic nurses) with Freestyle Libre 2 and change from Humulin to 2 insulins ( Toujeo and Fiasp). My HbA1c had generally been fine but I knew this average of blood glucose was made up of hypos/ hypers ie not so good control, so love ( and occasionally hate) the sensor: seeing weird hypers when carbs and insulin seem to be working out of kilter for eg. But generally I am 85, even 95% in range. To me your screen shots look like your long term insulin is too low a dose, if those ‘fasting’ results were say 4/5 units lower then your highs would also be a more respectable 4/5 units lower… Ask if your area does any diabetic training course though you might have to put up with a type 2 one like I went on, or type 1 ‘Daphne’…you’ll learn how to adjust your insulins, fine tune them around your lifestyle…everyone is different. Good luck.
Ronnie5cakes
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Thank you so much for replying to me…. My word, I thought my journey was bad enough but you must have had an even bigger shock with it all! I think you are definitely right about the long lasting needing tweaking…& definitely right about a course too. I’ve recently started to do Bertie online just for my own bit of knowledge…. Then I will be enrolled for Daphne in September (the DSN said she would try for me when she phoned last night) Thank you again & good luck to you too. Kind regards Ron.
Proud to be erratic
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Ron, did the DSN suggest any insulin dose changes to sort out the obvious 24 hrs high yesterday? I want to see your next 24 hrs before doing much detective work on yesterday's data - but I might get a gap late today to look more thoroughly at yesterday!
Ronnie5cakes
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Hi Roland… she did suggest I could change to levamir… 6 units mornings & 6 units evenings… to be honest I am going on a little holiday to Anglesey on the 20th & didn’t think it would be a good idea to change just before we go away…
I decided this morning to try 14 units of Lantus to try & help with the horrible high reading I had all through the night.
I’ve reviewed the amount I showed for my carbs at breakfast…& tbh it’s more like 100… She isn’t worried what I eat as I’ve lost so much weight…I have the carbs & cals book now so I’m trying to be more aware of the carbs….really grateful you are trying to help…kind regards Ron
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Rather than start a new thread I thought I'd ask a few from a type 3c questions here as we are few in number 🙂
How long did it take for things to settle down after surgery for a total removal? I thought I was well on the mend but obviously over did it as been in some pain and back on the occasional morphine. I'm guessing recovery and pain will have an impact but wasn't sure about morphine which seems to affect most things. Numbers have been a bit erratic although reducing the rapid for the warm weather has helped.
I had my diabetes clinic earlier in the week and well, it wasn't what I expected. The consultant wasn't particularly interested in the day to day management but rather what the outcomes were. When I pushed on the management questions I had he was quite vague. He also said complications were inevitable which was a bit depressing but probably not for 15-20 years. Equally he said there would be no eye tests, kidney tests etc for some time as not needed. Not sure if that's standard or comes back to the surgery recovery. My numbers were all good so he wanted to end the meeting. I was trying to explain about the amount of micromanagement needed to keep those numbers good but again didn't seem interested in how I got to the numbers so long as they were good.
I mentioned that after meals the numbers can be high and what was the risk of being at 12 for a few hours (just after the complications are inevitable bit). Apparently that's bad and I shouldn't do it. Quite how to avoid it I'm not sure but again it felt a very 'purist' approach rather than what was realistic and many people here seem to have a post meal high as normal.
And been summoned by the GP to discuss abnormal blood liver results which he though 'probably' weren't diabetes related although said without conviction.
I know you don't get to be a consultant without a lot of effort but has this been other people's experience or is it really if the numbers look ok you're on your own until there's a problem? For what was my first face to face with a doctor (ignoring the ones in hospital as I was completely off my face on painkillers) it was a bit frustrating.
How long did it take for things to settle down after surgery for a total removal? I thought I was well on the mend but obviously over did it as been in some pain and back on the occasional morphine. I'm guessing recovery and pain will have an impact but wasn't sure about morphine which seems to affect most things. Numbers have been a bit erratic although reducing the rapid for the warm weather has helped.
I had my diabetes clinic earlier in the week and well, it wasn't what I expected. The consultant wasn't particularly interested in the day to day management but rather what the outcomes were. When I pushed on the management questions I had he was quite vague. He also said complications were inevitable which was a bit depressing but probably not for 15-20 years. Equally he said there would be no eye tests, kidney tests etc for some time as not needed. Not sure if that's standard or comes back to the surgery recovery. My numbers were all good so he wanted to end the meeting. I was trying to explain about the amount of micromanagement needed to keep those numbers good but again didn't seem interested in how I got to the numbers so long as they were good.
I mentioned that after meals the numbers can be high and what was the risk of being at 12 for a few hours (just after the complications are inevitable bit). Apparently that's bad and I shouldn't do it. Quite how to avoid it I'm not sure but again it felt a very 'purist' approach rather than what was realistic and many people here seem to have a post meal high as normal.
And been summoned by the GP to discuss abnormal blood liver results which he though 'probably' weren't diabetes related although said without conviction.
I know you don't get to be a consultant without a lot of effort but has this been other people's experience or is it really if the numbers look ok you're on your own until there's a problem? For what was my first face to face with a doctor (ignoring the ones in hospital as I was completely off my face on painkillers) it was a bit frustrating.
rebrascora
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My first couple of appointments with my consultant were rather disappointing although yours sounds particularly poor. I would not be happy with a consultant saying complications where inevitable, especially as we have members of the forum here with 50 years of diabetes and no obvious complications and modern technology should dramatically reduce the risk to those diagnosed now. My appointments have got progressively better with my consultant, but mostly because my knowledge and experience have improved from reading and asking questions on this forum. Ultimately we have to become our own expert because our consultant/nurse doesn't live in our shoes and manage our diabetes day by day and moment by moment.
I think the issue of being up at 12mmols for several hours is covered by the TIR targets. If you are managing 70% TIR with your CGM and most of the remaining 30% is above range in the 12s with less than 4% below, then you are doing very well and those spikes above 12, whilst not ideal, are acceptable.
If you want to try to reduce your meal time spikes a bit, then generally you need to experiment with increasing your prebolus time by a few minutes for those meals where you are spiking higher for longer and find the sweet spot timing, where levels don't rise above 10. Sometimes, eg when eating out, it just isn't possible to prevent them, but at home you can do some experimenting to see what works for particular meals at particular times of day.
As an example, when I was first diagnosed, I used to spike up to 15mmols after breakfast nearly every morning despite injecting my NovoRapid 20 mins before I ate. I gradually experimented with increasing that timing and found that I needed over an hour between injecting and eating to prevent that spike from going above 10. As a result I changed to a different (faster) insulin (Fiasp) but I still needs 30-45 mins between injecting and eating breakfast and what I find is really important, is to inject before I get out of bed, because once I set foot on the floor my levels start rising and that insulin is fighting a losing battle.
This is just what works for me and many people would hypo in that time, so you have to carefully experiment by increasing the timing by a few mins each day, until you find the sweet spot timing for your body and your insulin. I should also say that at other times of day I need much shorter prebolus time of just 10-20 mins, but it depends on the meal and the time of day.
I think the issue of being up at 12mmols for several hours is covered by the TIR targets. If you are managing 70% TIR with your CGM and most of the remaining 30% is above range in the 12s with less than 4% below, then you are doing very well and those spikes above 12, whilst not ideal, are acceptable.
If you want to try to reduce your meal time spikes a bit, then generally you need to experiment with increasing your prebolus time by a few minutes for those meals where you are spiking higher for longer and find the sweet spot timing, where levels don't rise above 10. Sometimes, eg when eating out, it just isn't possible to prevent them, but at home you can do some experimenting to see what works for particular meals at particular times of day.
As an example, when I was first diagnosed, I used to spike up to 15mmols after breakfast nearly every morning despite injecting my NovoRapid 20 mins before I ate. I gradually experimented with increasing that timing and found that I needed over an hour between injecting and eating to prevent that spike from going above 10. As a result I changed to a different (faster) insulin (Fiasp) but I still needs 30-45 mins between injecting and eating breakfast and what I find is really important, is to inject before I get out of bed, because once I set foot on the floor my levels start rising and that insulin is fighting a losing battle.
This is just what works for me and many people would hypo in that time, so you have to carefully experiment by increasing the timing by a few mins each day, until you find the sweet spot timing for your body and your insulin. I should also say that at other times of day I need much shorter prebolus time of just 10-20 mins, but it depends on the meal and the time of day.
Ronnie5cakes
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Hi …it’s Ron (I had my pancreatectomy at the same time as you) I haven’t seen a consultant (or even got an appointment to see one) & my gp has no knowledge of diabetes (or folks like us) & completely leaves the whole matter to the DSN. I asked gp for multi vitamins & he told me to buy them over the counter! So I just trundle along… 13 units of lantus & nova rapid. My breakfast is a lot of carbs so 3 nova rapid (same food each time) lunch 2 nova rapid (similar food each time) evening meal 1 unit.. (I try to have similar amount of carbs each time.) All doses are plus corrections as necessary. My BG will still drop suddenly if I take the shortest & slowest of strolls but try to avoid JBs now by just sitting & waiting it out. It’s a good job I’m retired as although I keep busy at home…I could never hold down any kind of job now as the slightest, small amount of walking sends the BG spiralling down. I have huge spikes about 3.5 hours after eating … I have no idea about the different types of carbs so never can recognise the effect on those. I have felt extremely ill equipped to deal with this life threatening disease, I get extremely emotional over it as every day is a game of BG Russian Roulette & I feel so upset that no one prepares you for trying to live a normal life without such an essential organ as your pancreas. I would love to meet up with you and other type 3 C’s … it would be great to share knowledge & support each other….take care.. kind regards Ron
Hi, I guess even if I was disappointed at least I'm in the system and the general message seems to be recover from surgery and then we'll deal with things. Maybe your health board is similar but doesn't put you in the 'system' until that point? I was also getting huge spikes after eating right after a low so now split my rapid. I also now take it with my meal or sometimes even after to try align it with food. I am ,however, taking 8-9 units each meal so bit more to play with.
I know what you mean about work. I'm currently signed off sick till October (at least according to GP) and the idea of working seems quite challenging especially as I use to travel a lot. I've been offered redundancy and its quite tempting but I'm also aware no new employer is likely to be as accommodating as my current one where I've been 35 years.
I think I'd have to agree about consultant/nurse living in our shoes. Probably the most useful conversation I've had was with a ward sister on my recovery ward who was type 1 diabetic. She wasn't involved in diabetes care but it was great talking to her about how she manages things on a busy job with shifts.
martindt1606
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Are you on Facebook? I am a member of a small group "Total Pancreatectomy u.k." we have around 60 members who can help with TP related questions. There is a wide range of experience with TP's ranging this and next week all the way back into the last century.
Couple of things from post - I have had a retinopathy every year since my TP, I was told not to worry about long term complications and was advised I would be measured based on a higher HBa1C than a T1 would. Do not stress if you reach a BG of 12 it happens even when you have your basal and carb counting correct. Once you have more experience you will know when to make an adjustment (additional bolus). I have a pump and CGM and at least once a month will hit 16 (for no apparent reason). I have a routine to bring it back down but even so its always a worry because you have a period when you don't rea;;y know how much insulin you have on board.
Post PT the standard Diabetes blood tests have always had an abnormal liver blood reading which my GP and Diabetic Consultant always mentioned but never took further. I now have neuroendocrine metastasis in the liver, appeared after 8 years of scans (regular post PT follow up) however the blood readings didn't change with the metastasis.
Afternoon and I speak as someone who still has one albeit a necrotised pancreas.
I remember one Consultant looking at my pancreatic CT scan and saying sorry a few times and gave a bleak outlook.
My regular consultant said that I looked much better than what my scan indicated so that was 2 years ago.
As far as I am concerned after a few difficult months I have made a complete recovery save for having to take some medication.
I was diagnosed with diabetes a year ago today and again had a few weeks off work to stabilise but since returned to full time,driving 700 miles a week and am absolutely fine in terms of managing my BG levels apart from I can’t always time my walks etc as I can when at home.
I have been discharged from my DSN due to my acceptable level of control and have never seen a diabetes consultant or even my upper GI one for 12 months.Nor do I see the need to as managing fine.
As I said I do appreciate that having no pancreas makes things much more difficult but I do think as individuals we are in the best position to manage our diabetes and again I am lucky in that I have an understanding of the condition and have great support all around.
My point is until something around the corner can hit any of us at any time I am happy to live as normal a life as possible but understand not everyone is in that position but do want to give people some hope that things can get back to normal even if it is a new normal.
Spiking up to 13/14 or whatever for short periods makes no difference to how diabetes effects is it is only if you remain hyperglycaemic for pro longed periods where it becomes an issue.
Anyway please feel free to DM or reply if required and good luck all
I remember one Consultant looking at my pancreatic CT scan and saying sorry a few times and gave a bleak outlook.
My regular consultant said that I looked much better than what my scan indicated so that was 2 years ago.
As far as I am concerned after a few difficult months I have made a complete recovery save for having to take some medication.
I was diagnosed with diabetes a year ago today and again had a few weeks off work to stabilise but since returned to full time,driving 700 miles a week and am absolutely fine in terms of managing my BG levels apart from I can’t always time my walks etc as I can when at home.
I have been discharged from my DSN due to my acceptable level of control and have never seen a diabetes consultant or even my upper GI one for 12 months.Nor do I see the need to as managing fine.
As I said I do appreciate that having no pancreas makes things much more difficult but I do think as individuals we are in the best position to manage our diabetes and again I am lucky in that I have an understanding of the condition and have great support all around.
My point is until something around the corner can hit any of us at any time I am happy to live as normal a life as possible but understand not everyone is in that position but do want to give people some hope that things can get back to normal even if it is a new normal.
Spiking up to 13/14 or whatever for short periods makes no difference to how diabetes effects is it is only if you remain hyperglycaemic for pro longed periods where it becomes an issue.
Anyway please feel free to DM or reply if required and good luck all
Funnily enough just back from the GP most of which was spent discussing who she could talk to about my liver blood results as according to my notes I'm not on anyone's or any hospital's care for the surgery. Several dietitians and an oncologist as well as a diabetes consultant though . Good to see NHS Wales is joined up. Doing a ring round tomorrow to find out who the lucky consultant is.
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