type 1 or type 3c

[Proud to be erratic]

Thanks guys for some really good advice and i didn't know they did half measures because ive thought i need 4.5 at night, 4 isn't enough but 5 is dropping me all day long. The diagnoses and treatment is different for type 3 c and ive had so many issues with this from the beginning, that's why I'm upset, ive had horrible lows lasting over an hour whilst my sons on the phone to the paramedics, not like any lows ive experienced until this year, type 3c is more difficult to manage than type 1 and they would have started me off on metiformin, i didn't get that chance to see and it was known as pancreatogenic diabetes, its name has been updated to type 3c.Diabetic nurse is phoning me back today x

Hello @lindsey50, I am T3c after a total pancreatectomy that removed a tumour around my pancreas. So I can't offer much advice about T3c following pancreatitis and no major surgery.

However I strongly agree that T3c is difficult to manage and I personally think more so than T1. In my case no pancreas means NO pancreatic functions and a rearranged digestive system, with unwanted bowel probs. Plus Creon to replace my missing digestive enzymes.

I am on Tresiba and I too often read in this forum advice to change to a shorter acting twice daily basal - as if that will resolve everything! Tresiba has been the best thing for me ONCE I understood that Tresiba is not comparable and needs to be used very differently to other basals.

Our basal needs across a 24 hour period can vary a great deal and Tresiba can never meet that variation. So I don't expect it to. I have optimised my Tresiba to give me steady untroubled nights and have settled for managing my waking hours with a mix of activity / exercise, bolus and snacks. With my CGM (formerly Libre, now Dexcom One) this is pretty straightforward. My alerts (alarms - but I rarely get so low or high that I need an alarm!) warn me about changes in BG (and Dex One has more alerts than Libre 2 with better sounds). I expect my days to be interfered with by changing BG and I carry a mix of different snacks in my 'goodies bag', which goes out with me along with my insulin and meter (ALWAYS), in my newly acquired man-bag.

I am retired but still very active and have very varied days; sometimes (rarely) doing very little but otherwise busy with anything and everything. No day is the same as yesterday, ie no regular pattern. I cycle, walk lots, drive around UK and I appreciate my Tresiba keeping me steady each night. My basal needs change a bit with the seasons - might get down to 8 units in the peak of summer and up to 10 in winter. I have half- unit pens and I tweak my bolus with just a half unit if I see an upward trend from my CGM and am unable to exercise a bit more to stop that upward trend.

I appreciate not having to juggle both basal and bolus. Because of Tresiba's c.40 hour duration I know that any basal adjustment can take 3 days to become noticeable. So I am not tempted to tweak my basal - until my night CGM graphs show there is a clear change going on. The nighttime fasting for the basal check is very easy! Life is complicated enough just juggling bolus ratios (meat, gravy and 2 veg vs a full fat pasta dish?) along with activity /exercise considerations (planned but didn't happen or vice versa) and some of the other 42 known factors that affect our BG.

In case you think my BG management must be perfect ... far from it. My TIR is currently over 70%, has been higher and I'm learning to accept that as "good enough". I still have days when I feel I'm chasing the impossible. I still get low, but rarely hypo and can be stuck in the low 4s for over an hour; I know that if I overreact I will get higher more quickly and then race uncontrollably to hyper. So I resist overreacting and begrudgingly accept this reality; I'm gradually improving this - slowly (work in progress!). My daily graphs are still very irregular and "unicorn" days are few and far in between.

All that said in praise of Tresiba, it could also be that Tresiba is simply not the right basal for you. But I'm tempted to ask how/why you are on Tresiba? Also has anyone previously pointed out that Tresiba is not like other basals and needs its own, different, mindset in how to make best use of it? My former DSN definitely did not say anything about this.

Good luck.

 

[lindsey50]

omg i did not know any of this at all, this is the first ive ever heard of it being an insulin different to others and ive been given no advice only to take it at a regular time at night before bed, and it seems this is when my lows are hitting the most ,even before taking it, around 11/12 at night, ive got to do some research myself now you have given me invaluable information, i thank you so so much for helping me understand this horrible condition, i will update guys with any new info, currently i dropped 7 last night in 6 hours, went to bed on 14, i know that's high but I'm scared tbh, woke up feeling cold at 6 and its still going down, no fast insulin taken so far, x

 

[rebrascora]

I wonder if you were diagnosed during a flare up of pancreatitis which was causing a lot of inflammation resulting in high BG levels and compromised insulin production, but that maybe you don't currently need insulin or just need very small doses because your own pancreas is still managing to produce a reasonable amount itself.
Have you had a DAFNE (Dose Adjustment For Normal Eating) course? It is an intensive education course on insulin usage and is so much more than just carb counting as the name suggests. It is about learning to keep yourself safe in a whole range of everyday situations and knowing when your basal insulin needs adjusting and what factors affect BG levels, like exercise and alcohol potentially lowering BG but stress and illness often increasing it and to take these things into consideration when you calculate your doses. It is a 5 day course, sometimes a whole week in one go and sometimes one day a week spread over several weeks. If you haven't been offered such a course then ask your nurse as it is really helpful and just spending time with other insulin dependent diabetics is really beneficial. The courses tend to be small with about 6-8 people, but amazing to learn how different diabetes is for different people and gain tips and learn to problem solve for each other. The benefit of that being that diabetes changes as you go through life and whilst you may be experiencing one set of problems now (hypos in your case by the sound of it) you may experience different problems in a couple of years time. Diabetes keeps you on your toes and keeps moving the goal posts just when you have got the measure of things.

 

[helli]

It is a 5 day course, sometimes a whole week in one go and sometimes one day a week spread over several weeks.

When I did DAFNE, it was held from 5pm to 9pm every Monday evening for 5 weeks.
It was not a full 5 days.

 

[Bruce Stephens]

When I did DAFNE, it was held from 5pm to 9pm every Monday evening for 5 weeks.

And when I did our local variant it was 2 or 3 hours over 4 Wednesday evenings.

 

[trophywench]

I didn't want my BG to only be steadier and predictable overnight - I wanted it to be steadier 24 hours a day! And that, I found, I could better achieve using Levemir twice daily. Whilst all this was going on, I was being pressed to reduce my HbA1c - which I never managed to do whilst working, and only achieved once after I had to retire early due to stress*, when I was determined to do it since I was otherwise apparently so ruddy useless at doing my job, so I'll do this other job - for my very own self without being paid for it, instead, then. But - pre Libre being invented and with CGMs then costing £££ thousands and not being neat and little, you carried them round with you in a neat little satchel (so much like the original mobile phones, but admittedly smaller and lighter weight) so fingerprick testing every hour during waking hours and multiple hypos but admittedly, nowhere near as many hypers - it really was ridiculous and unsustainable long term so we all needed to be satisfied with what MY body did - which may very well not be the Gold Standard of what a human body CAN do, but I'm stuck with it, so you'll just have to accept that too.
(* whole other story, irrelevant in this context)

And that IS part of the trouble. Everyone's body really IS different - despite us also having commonalities (as my bro in law expresses this phenomenon, two of everything up the outsides and one of everything down the middle) so OK whatever type of diabetes we happen to have although there will always be other people with that same variety, whatever we are offered to treat it and whatever we each finds wonderful, that's no promise that you or eg Proud to be erratic or Rebrascora, also would.

I'm no expert, but by reading about Type 3c in the last couple of years I have found out that depending on the ability of the individual's own body to produce insulin - if it isn't instantly entirely absent - then metformin can be tried to assist the body to use whatever insulin it does have, better than it would be able to otherwise. (cos metformin does not do anything whatsoever directly with the pancreas itself and eventually, sooner or later the reduced amount of insulin reduces further and further down to nowt at all - so they'll need insulin. And metformin also has some horrible gastric side effects, for any number of people, though not everyone - again! 🙂🙂

Now - I'm intrigued by your needing operations which you say were needed because of insulin use. I've just been using insulin for 51+ years so far and have never ever heard any such thing before in my life. What on earth did the insulin cause to malfunction?

 

[trophywench]

Tresiba only came into the UK in 2021, although it had been available elsewhere since its original launch by NovoNordisk in 2013 hence if you're in the UK you can only have been using it for 2 years, not 8 - so hence I'm now even more puzzled than I was before.

 

[lindsey50]

Tresiba only came into the UK in 2021, although it had been available elsewhere since its original launch by NovoNordisk in 2013 hence if you're in the UK you can only have been using it for 2 years, not 8 - so hence I'm now even more puzzled than I was before.

Im confused why you are puzzled, i was asking for advice on here ,for help i guess, and some members have been great, but others are not so, i was started on Lanctus solostar, 10 units, then after a few years they changed it because of my bg lowering, to Tresiba, and its been great until last year around june is when it started dropping through the night, my diabetic nurse advised me to lower 1 unit, which i have continued to do and carried on going to my 6 monthly appointments, i am insulin sensitive, this was diagnosed last year, this year, like ive already said, has been awful with so many lows after i was put on a long term dose of antibiotics,7 weeks which ultimetly reduced my glucose so much i had a severe hypo lasting over an hours, non readable on blood or libra monitor.i saw my diabetic nurse last week and she said i am insulin sensitive, but also that she thinks im type 3c, i agree, my gp still hasnt got in touch and im waiting still for phone calls from diabetesuk and my diabetic nurse. i have been on the dafne course and i weigh all of my food, i have diabetic stiff hand syndrome due to insulin my consultant explained,carpel tunnel both wrists and trigger thumb right hand, and he explained it will go to other digits, only because you havnt heard of these conditions does not make them imaginary x

 

[trophywench]

Well I've certainly heard of carpal tunnel syndrome, and also know very well that it's quite common to get it with diabetes, as is having frozen shoulder(s) and retinopathy but just googled 'D stiff hand syndrome' which told me it's a side effect of having diabetes, not directly of insulin itself, and otherwise known as Diabetic Cheiroarthropathy - of which once more, neither have I ever heard of before. It's really down to a form of neuropathy which is and always was exceedingly common with diabetes, but the NHS website doesn't associate insulin use with it - just the usual neuropathy association of too high BG for too long. (there's never any indication as to 'how high' or 'for how long') - but I'd guess you've probably been unlucky getting lumbered with it as quickly as you have.

I absolutely never intended to infer you weren't telling the truth or that anything didn't exist and I'm very sorry if you thought that - just couldn't understand how on earth this had all panned out for you since you never explained the progression to the forum before - that's all - I now do understand more and better, thank you - and some of it it's just the differences in terminology used.

With regard to Lantus (and then Tresiba) - the NHS knows very well indeed that having exogenous background insulin dripping in at absolutely the exact same rate hour after hour ad infinitum - is absolutely NOT what a fully operational pancreas does so why on earth they still seem to think nearly everyone can do perfectly well with one or the other (and ooh yes, there are still others!) I do not know. However - we all had to start somewhere - but certainly doesn't mean we cannot query what the medics tell us they think will be 'better' for us - ask, ask and ask again until we feel happy about whatever it is for us.

There are things about my healthcare that I'm not 100% comfortable with myself - but oddly enough, I only recently found the impetus to try and start doing something about it cos I was struggling mentally myself for most of last year but more recently have found someone at my GP surgery who seems to be on more of the same wavelength as me - so I got the ball rolling there with him last week and will try and continue progressing this at my own diabetes clinic appointment (delayed because of the consultants having to cover the junior drs strike last month) next week.

 

[Lucyr]

Tresiba only came into the UK in 2021, although it had been available elsewhere since its original launch by NovoNordisk in 2013 hence if you're in the UK you can only have been using it for 2 years, not 8

No way it’s definitely been around way longer than that, it must be at least 5 years since I convinced the hospital to let me go back to lantus as I hated tresiba

 

[Inka]

omg i did not know any of this at all, this is the first ive ever heard of it being an insulin different to others and ive been given no advice only to take it at a regular time at night before bed, and it seems this is when my lows are hitting the most ,even before taking it, around 11/12 at night, ive got to do some research myself now you have given me invaluable information, i thank you so so much for helping me understand this horrible condition, i will update guys with any new info, currently i dropped 7 last night in 6 hours, went to bed on 14, i know that's high but I'm scared tbh, woke up feeling cold at 6 and its still going down, no fast insulin taken so far, x

Dropping 7 overnight is scary @lindsey50 I’d be knocking a few units off my Tresiba if that was me. Are you still on 5 units of Tresiba?

 

[trophywench]

No way it’s definitely been around way longer than that, it must be at least 5 years since I convinced the hospital to let me go back to lantus as I hated tresiba

Mmmmm, Lucy

According to NN dot co dot uk website the date of the first marketing authorisation in the UK marketplace, is 2021. Though my initial thought was 'Nah, not that recent though it is indeed newer than Nrapid or Levemir' because that initial info came from somewhere else not NN themselves, I then opened NN's website to check. Wonder if NN got earlier authority in the name of the parent co or something - cos somewhere between 2013 and 2021 'elsewhere than UK' sounds a bit more like the date I'd have thought it probably was - cos I also seemed to recall I'd heard of it (hence prior to 2021) back on DSF. You've just confirmed that from personal knowledge.

Only of academic interest, in the event. (But also - how odd.)

 

[Robin]

According to NN dot co dot uk website the date of the first marketing authorisation in the UK marketplace, is 2021

I just had a trawl back through the forum for references to Tresiba. Several members, including Flutterby, were on it in 2014, according to the posts around that time.
My GP surgery nurse said she couldn’t prescribe it, though, it could only be done at a hospital clinic.

 

[trophywench]

Ah, well, in 2014 it would still be relatively new, especially being so long acting. And both of us attended the same hospital diabetes clinic, though it had moved out of the (by then) downgraded hospital in Kidderminster. I remembered the Dr she saw there from when he was the consultant's Houseman. Tim, Tim - very nice indeed, as it happens - but by no means dim! She'd apparently had a lady consultant as a child whereas I was always seen in the adult clinic, so we couldn't relate to each others recollections of those we each knew.

 

[Proud to be erratic]

omg i did not know any of this at all, this is the first ive ever heard of it being an insulin different to others and ive been given no advice only to take it at a regular time at night before bed,

The advice to take Tresiba at a regular time reflects the total misunderstanding by some HCP about Tresiba. Because the profile of Tresiba is 40-42 hrs, today's dose is topping up yesterday's dose! So it is NOT important to get the timing accurate. Indeed Tresiba is often a chosen basal by people who regularly fly long haul and while they may need to make one interim basal dose they often don't and just switch their dose timings to match local times - with no other adjustment.

and it seems this is when my lows are hitting the most ,even before taking it, around 11/12 at night

Tresiba won't be causing that directly - it has a slow start up and whether you dose am or pm that is not the nub of the problem. But it does seem from your various comments that you have too much basal insulin on board and you'd get this effect with too much of any basal - not just Tresiba.

Indeed, this is part of a wider problem that I previously alluded to: If you get lots of hypos or just lows, the this can only be because there is too much insulin in your blood and it is dutifully moving out any glucose. But the question is which insulin? Your own naturally produced, or your shorter lasting but faster release bolus, or your long acting and slow release basal?

Because I have no pancreas I don't make any natural insulin, but YOU could well be and for various reasons you MIGHT be producing natural insulin intermittently. @rebrascora has talked about this possibility. Or you could be taking too much bolus (NR) for the amount of carbs that you are eating - which is why it is important to carb count and get a good handle on that aspect. Or you simply have too much basal in your system and that needs reducing - which is what you have been doing. The problem is in deciding where your excess insulin is coming from.

The beauty of Tresiba FOR ME is my acceptance of getting my Tresiba about right for steady nights and then managing days by only juggling bolus, food and activity. This has led to me steadily adjusting my bolus ratios and bolus timings, on the presumption that there will be some Tresiba in my blood at all times and so making my bolus fit on top of that. And it is that way around (bolus fitting on top of basal) always, I think, because the shorter acting faster insulin dissipates from your system before the slower insulin.

Incidentally your body sees any insulin as ... just insulin. Generally it doesn't know whether it is natural or from supplementary injections and it doesn't know whether any insulin is coming from slow background release or faster and shorter duration profile or whether it has some clever "engineering" in its make-up. It doesn't know that some insulin was intended for food or to counter background glucose releases from the liver store. It just uses any insulin that is present to sweep up glucose and one's pancreas has other hormones that naturally and cleverly play a big part in regulating insulin production and getting glucose released by the liver to keep one in balance.

Your pancreatic damage may possibly have had an impact on those pancreatic functions, as well as your insulin production.

With regard to Lantus (and then Tresiba) - the NHS knows very well indeed that having exogenous background insulin dripping in at absolutely the exact same rate hour after hour ad infinitum - is absolutely NOT what a fully operational pancreas does so why on earth they still seem to think nearly everyone can do perfectly well with one or the other (and ooh yes, there are still others!) I do not know. However - we all had to start somewhere - but certainly doesn't mean we cannot query what the medics tell us they think will be 'better' for us - ask, ask and ask again until we feel happy about whatever it is for us.

@trophywench, you have without any dispute from me years of experience in living with D and managing it successfully.

But I think it is disingenuous for you to draw attention to the obvious and correct point that a non- diabetic person won't have exogenous insulin appearing 24 hrs a day at a constant rate - because anyone on MDI is blatantly NOT replicating what the body does naturally. With MDI we inject the wrong product into the wrong place at the wrong time. But we do so with best intent to counter the consequences of our diabetes. And I certainly don't think I'm getting near to what my former pancreas did. But I have found a way of managing my D that takes advantage of Tresiba's properties providing for me a little less complex process with a very fixed basal and is possible today, thanks to CGM.

When my D is not behaving I don't have to immediately and first decide whether it might be a basal or bolus issue - although of course such reviews are necessary and appropriate over time.

Pumping is my next aspiration and that will mean another very different mindset.