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C-Peptide results

The way I see it, I am lucky if I get one consultant appointment a year, so my next appointment will likely be in 2026 and therefore I feel that I need to be prepared to have at least a partial discussion of it now and express my preferences, but my gut feeling is that, like @Eternal422, they will want to start shifting people onto alternatives now, so that there isn't too much chaos in 2026 when lots of people can no longer get their Levemir and are being compelled to change. I might ask to start trying alternatives whilst keeping my Levemir for now, so that I can choose periods when I feel on top of things to experiment and see how I get on.
 
rebrascora said:
The way I see it, I am lucky if I get one consultant appointment a year, so my next appointment will likely be in 2026 and therefore I feel that I need to be prepared to have at least a partial discussion of it now and express my preferences, but my gut feeling is that, like @Eternal422, they will want to start shifting people onto alternatives now, so that there isn't too much chaos in 2026 when lots of people can no longer get their Levemir and are being compelled to change. I might ask to start trying alternatives whilst keeping my Levemir for now, so that I can choose periods when I feel on top of things to experiment and see how I get on.
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I've never had an appointment with a consultant (2 1/2 yrs in) - just one appointment with a locum doctor at the hospital (who had less knowledge of T1 Diabetes than me IMO 6m after diagnosis) - a DSN on my DAFNE Course in swapped me on to Levemir from Lantus in March this year and I have found it much better (I can lower my evening dose after exercise usually at weekends) and it works much better than splitting Lantus - not happy about changing again so will make sure I have enough to last as long as possible - why are they doing this? Is it so that they can switch everyone on to HCL which just uses QA insulin? In which case they need to update the NICE Guidelines as I'm personally well off their criteria as I have things under control (touch wood!) with the regime I am currently on - very frustrating (rant over!)
 
My guess is that it is a combination of most Type 1s going on to a pump.... particularly in other countries (particularly USA, Canada and Europe) where insurance pays and therefore there is less restriction on qualifying for a pump, and also the penchant that consultants seem to have for Tresiba (also Novo Nordisk) as the "wonder basal", so the demand for Levemir will have diminished worldwide and it is perhaps no longer a money maker and the production line could more profitably be converted for SGLT-1s for which there is massive worldwide demand.
 
Unfortunately it is all about money (on all sides of the argument) and not about the consumers and people who actually need it - I reckon I can get approx 85 cartridges in a year though and they last a couple of years so should be ok for a while (joke!)
 
Yes, money certainly factors into it. I imagine the patent will be expiring on Determir soon, if it hasn't already, so perhaps slightly cheaper generic alternatives could come to the market which would further diminish demand for Levemir. I suppose that might be one glimmer of light for those of us who love it, although with the increase in pumps and HCL over the coming few years, it might not be worth another manufacturer making a generic equivalent as the basal insulin market is declining. In 3 or 5 years time, I imagine most Type 1s in the UK will be on pumps, and many of the remaining Type 1s will be on other basal insulins.
 
rebrascora said:
My morning dose will likely be considerably bigger than yours though (20 units) so will perhaps last longer.
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True, but the profile of isophane is a tailing off one, so the effect at the end of its action is minimal, whereas Levemir doesn’t have that and peters along at the same level for hours at the end. I’m not sure if the duration of isophane is dose-dependent in the same way Levemir is. I would guess not - or at least, not so much - as it’s a completely different mechanism.
 
rebrascora said:
My guess is that it is a combination of most Type 1s going on to a pump.... particularly in other countries (particularly USA, Canada and Europe) where insurance pays and therefore there is less restriction on qualifying for a pump, and also the penchant that consultants seem to have for Tresiba (also Novo Nordisk) as the "wonder basal", so the demand for Levemir will have diminished worldwide and it is perhaps no longer a money maker and the production line could more profitably be converted for SGLT-1s for which there is massive worldwide demand.
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I think it’s also about the growing number of Type 2s who use insulin. The weekly basal Novo Nordisk is working on is aimed at them and I think they’re predicting a massive market, especially in the US.

It’s annoying because I’m a firm believer that we need a variety of insulins because not every insulin suits every person. Removing Levemir surprises me. As you say @rebrascora it could be the patent about to expire, but even then, the biosimilars aren’t popular so I don’t think it would have dented their market much.
 
@rebrascora - glad I got that info yesterday about Levemir from my DSN, hopefully you will at least have some forewarning now for your appointment today. I wish you all the best and hope it goes well for you. I would say though that there is time before losing Levemir so hopefully there will be suitable options for alternatives for you, and time to experiment to find the best match.

Despite HCL being rolled out, I get the sense that not everyone would necessarily want one. Looking at @PattiEvans posts it seems a bit of a mixed bag and poorer control than other methods. My DSN has said on numerous occasions that my control is better on MDI than it would be on pump or HCL. I would imagine other people are in this position too. So I would have thought there will still be a need for a basal insulin to support MDI going forwards.
 
Eternal422 said:
@rebrascora - glad I got that info yesterday about Levemir from my DSN, hopefully you will at least have some forewarning now for your appointment today. I wish you all the best and hope it goes well for you. I would say though that there is time before losing Levemir so hopefully there will be suitable options for alternatives for you, and time to experiment to find the best match.

Despite HCL being rolled out, I get the sense that not everyone would necessarily want one. Looking at @PattiEvans posts it seems a bit of a mixed bag and poorer control than other methods. My DSN has said on numerous occasions that my control is better on MDI than it would be on pump or HCL. I would imagine other people are in this position too. So I would have thought there will still be a need for a basal insulin to support MDI going forwards.
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HCL will be a long time coming, too. Currently the plan is to roll it out to people who are already using pumps, within the next 5 years. Currently, only around 15-20% of people with Type 1 are using a pump at all, and I haven’t seen anything to suggest the rollout of pumps will be accelerated.
 
Eternal422 said:
Despite HCL being rolled out, I get the sense that not everyone would necessarily want one. Looking at @PattiEvans posts it seems a bit of a mixed bag and poorer control than other methods. My DSN has said on numerous occasions that my control is better on MDI than it would be on pump or HCL. I would imagine other people are in this position too. So I would have thought there will still be a need for a basal insulin to support MDI going forwards.
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Remember that many T2s will still need basal insulin too, as well as T1s who don’t want or don’t qualify for HCL eg where a1c is below i think it’s 58 currently that you don’t qualify, so basal will always be available
 
Robin said:
HCL will be a long time coming, too. Currently the plan is to roll it out to people who are already using pumps, within the next 5 years. Currently, only around 15-20% of people with Type 1 are using a pump at all, and I haven’t seen anything to suggest the rollout of pumps will be accelerated.
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I believe the threshold has been dropped from a1c needing to be about 63+ to 58+ to increase the pump eligibility. Quoting those figures from memory so may not be exact but it’s definitely dropped in line with the HCL rollout
 
Eternal422 said:
The slight fly in the ointment is that as I do still produce some insulin, albeit not loads, it may not be totally predictable and therefore my results with injected insulin may vary. Although up to now things have been as predictable as they can be and I respond to the amount of insulin I inject in a fairly predictable way.
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Your DSN sounds very sensible and has taken on board your preferences, whilst looking at the evidence of your management achieved with MDI. Very promising.

I am not sure that there is anyone on here who finds that the results of injected insulin are totally predictable. There are all those other factors, in addition to the carbs, that impact our BG such as the fat content of food, the weather, other meds, levels of activity, the day of the week, and the other 30+ things.

Sounds like you have a system that works for you and gives you results that you and your DSN are happy with. Good that they are accepting @PattiEvans plan, If it ain’t broke don’t fix it.
 
@Eternal422 I'm very pleased that your DSN seems so very sensible and agrees with you regarding remaining on MDI.

Regarding my posts on HCL I hasten to say that just because I am not happy with the system I have i.e. Omnipod 5 and Libre 2+ it's not to condemn all HCLs. I get the feeling that my system was cobbled together in a bit of a hurry in order to be competitive with other pump manufacturers and their systems. There is also the issue of training, mine was done on the internet with a group of 10 patients, the DSN and a rep from Insulet. Some of the cogs and wheels were not even touched upon. I thought some information was missing, only to find out for myself that it wasn't missing, it just needed to be dug into and if you didn't know where then it's unlikely you would find it e.g. time in range over a period rather than just since midnight on the day. Some basics like that, which were much more "in your face" with the Libre 2 app on the phone. TBH I do not find the Omnipod (regardless of the no tubing v tubed pumps issue) is anywhere near as good as my old tubed Combo pump. I could always achieve spectacular control with that. Far better than I could on MDI.
 
Robin said:
HCL will be a long time coming, too. Currently the plan is to roll it out to people who are already using pumps, within the next 5 years. Currently, only around 15-20% of people with Type 1 are using a pump at all, and I haven’t seen anything to suggest the rollout of pumps will be accelerated.
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That doesn't seem to tie in with whats happening here...theyre getting everyone who wants hcl (pumping or not) to do online training, pretty pointless if they aren't even going to touch mdi people til after 5 years
 
Tdm said:
That doesn't seem to tie in with whats happening here...theyre getting everyone who wants hcl (pumping or not) to do online training, pretty pointless if they aren't even going to touch mdi people til after 5 years
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Perhaps our local team is hoping things will speed up? Mind you, then haven't given any timelines and it supposegetting people to brush up carb counting via the online course has no real downside...
I just hope it won't be 5 years plus to move from mdi to pump...
 
Sorry to have hijacked your post somewhat @Eternal422 but just wanted to update on my appointment, which I am hugely relieved to report went exceptionally well. The new consultant was very approachable and patient centred and extremely supportive. He is happy for me to continue on Levemir until it runs out but discussed options for replacement and initially said there were 3 options available, a standard Glargine, a triple strength Glargine ie Toujeo and Degledec ie Tresiba and that of those 3, a standard Glargine was likely the best fit which I could split like my Levemir, however he said there was a non standard option of an NPH insulin which might suit me better, ie an Isophane. He said that he had worked all over the world including his native country of India where resources are limited and the Middle East where money can be no object and everything can be cutting edge there but that the more modern insulins and tech don't always deliver the best results and sometimes the older insulins can work better, so newer is not always best, which was really refreshing to hear. His only concern with the Isophane options was that they might suffer the same fate as Levemir and be phased out at some point, but he was not at all averse to me trying them and felt, from listening to me, that they would be a good/the best fit.
He was surprisingly and quite obviously blown away with my TIR which is a bit lower than I normally achieve at 87% and HbA1c of 46 but sought some assurance that maintaining such a level was not taking a toll on me. He agreed with me that a pump on HCL would probably not achieve the level of management that I currently get with Libre on MDI and I made it clear that I wasn't interested in that option at this time. I was very surprised to be told that he would see me again in April/May as my appointments have stretched to yearly since Covid and we could discuss the Levemir situation again then, but otherwise to just continue as I am and keep up the good work! It was a really reassuring and supportive appointment.
PS.... I was so stressed about the appointment that when the nurse took my BP before going in to see him, it was 160/100!! (eek!) The cuff inflated, stopped, inflated again, stopped and then inflated a third time in order to get above my pressure. Thought my arm was going to go dead!
 
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