Hello

[RogerB]

Just joined the forum. My name is Roger, I will be 67 in August and was diagnosed type1 when I was 21.
I still use an insulin pen and an old fashioned glucose moniter but I'm hoping to to get some new tech soon. I joined this forum hoping to learn something about what is available and how it works.
Thanks, Roger.

 

[rebrascora]

Hi and welcome.

Pleased you have found the forum and I hope you will find it as informative and supportive as I have over the past 3 years.... I am a late starter... 56 at diagnosis but grateful for that as I am not sure I could have managed it very well through my younger years. Takes a bit of adjusting to when you are older though.

Good to hear that you are hoping to get some of the new tech soon as it can be a real game changer, especially the Freestyle Libre system.... as long as you don't get too concerned about all the data it gives you and understand it's limitations.
Which insulin's do you use? I am guessing you are carb counting but I think there may be some long standing Type 1s who are still on mixed insulin, so perhaps you are one of them especially as you mention insulin pen, singular, rather than plural.

Anyway, delighted to have you here and do ask absolutely anything you want answers too..... at least diabetes related anyway 🙄 There is a goldmine of experience and practical knowledge here to dig into. I look forward to getting to know you better.

 

[Bruce Stephens]

Yes, Libre is the easy one: it should be available to anyone with Type 1, and many (though not all) of us find it really helpful. Well worth asking your GP or other HCP about.

https://twitter.com/x/status/1537362185755799553

 

[everydayupsanddowns]

Welcome to the forum @RogerB

A good innings with T1 so far! Hope you manage to find some gadgets and gizmos to help you.

Are there any things in particular you find difficult? Any tech that you instinctively feel would be a good fit for you?

Have you done any education courses like DAFNE or BERTIE over the years?

 

[RogerB]

Hi and welcome.

Pleased you have found the forum and I hope you will find it as informative and supportive as I have over the past 3 years.... I am a late starter... 56 at diagnosis but grateful for that as I am not sure I could have managed it very well through my younger years. Takes a bit of adjusting to when you are older though.

Good to hear that you are hoping to get some of the new tech soon as it can be a real game changer, especially the Freestyle Libre system.... as long as you don't get too concerned about all the data it gives you and understand it's limitations.
Which insulin's do you use? I am guessing you are carb counting but I think there may be some long standing Type 1s who are still on mixed insulin, so perhaps you are one of them especially as you mention insulin pen, singular, rather than plural.

Anyway, delighted to have you here and do ask absolutely anything you want answers too..... at least diabetes related anyway 🙄 There is a goldmine of experience and practical knowledge here to dig into. I look forward to getting to know you better.

Hi, thanks for replying,

Sorry I should have used the plural "pens" as I use 2 different insulins. The medium acting Hypurin Porcine Neutral and the long acting Hypurin Porcine Isophane which I've been using for over 20 years.

I do count the carbs but not particularly strictly🙄.

Unfortunately I've had 2 appointments with my doctor at the diabetes centre cancelled so I don't know how soon I'll be getting any new tech. But I hope to be seeing the nurse soon to discuss my options.

 

[RogerB]

Welcome to the forum @RogerB

A good innings with T1 so far! Hope you manage to find some gadgets and gizmos to help you.

Are there any things in particular you find difficult? Any tech that you instinctively feel would be a good fit for you?

Have you done any education courses like DAFNE or BERTIE over the years?

Thanks for replying,

I don't know what T1 is but I'm pleased you are getting on with it. I'll do some research.
Haven't done either of the courses you mention. Maybe I should look into it.

 

[Bruce Stephens]

Unfortunately I've had 2 appointments with my doctor at the diabetes centre cancelled so I don't know how soon I'll be getting any new tech. But I hope to be seeing the nurse soon to discuss my options.

There's a chance (depending on your CCG) that your GP will be fine prescribing Libre for you without any input from the specialist team. (I think the current stats are that around 75% of people with Type 1 are prescribed it (or another CGM, or at least have been offered it).)

 

[Bruce Stephens]

I don't know what T1 is

It's just an abbreviation for Type 1.

Haven't done either of the courses you mention. Maybe I should look into it.

You can try https://www.bertieonline.org.uk/ and https://www.mytype1diabetes.nhs.uk/ though there's benefit in the usual group in-person versions. I think some people who've had diabetes for a while have found the course a bit dull, but not all. (I was lucky in that mine was specifically for people who'd had T1 for a while, where normally they run the course for relatively newly diagnosed people.)

 

[rebrascora]

My DAFNE course was a mixture of experience. I think the difficulty with some people who have had diabetes a long time is that they can be resistant to change.... especially when they have muddled along for a lot of years. There was a lady on my course who had 50 years in and had been experiencing severe nocturnal hypos for a lot of that time but just seemed to have accepted it as "normal". It was her family who pushed her to attend but the outcome was that they resolved her problem. She had already been prescribed Libre prior to the course, but as a result of attending the course, she is now on a pump because she only needed tiny amounts of insulin and is managing so much better. If you are open to change, then I think the courses can be really helpful in terms of learning new strategies and accessing technology. At least 2 of the people on my course ended up on pumps and there were only 6 of us. I got the feeling at my consultant appointment after the course, that I could possibly have been considered for a pump myself if I had wanted to make a case for it, but I have learned to manage well on MDI as a result of what I learned on the course and what I have learned here on the forum and the amazing data supplied by Libre.

 

[RogerB]

There's a chance (depending on your CCG) that your GP will be fine prescribing Libre for you without any input from the specialist team. (I think the current stats are that around 75% of people with Type 1 are prescribed it (or another CGM, or at least have been offered it).)

Thanks for your input, I'll bear that in mind, but I'm having just as much of a problem getting an appointment with my GP.

 

[Bruce Stephens]

There are (of course) other things. I've mentioned Libre more than once because in terms of likely reward vs difficulty of getting it I think it rates really highly (should be really easy to get and you're likely to get a lot out of it).

There's also pumps, pumps together with CGM which provide various levels of automation. And some (much easier to get) things like smart pens: if you find yourself forgetting whether you've injected or forgetting how much, there are pens which can remember that.

 

[RogerB]

There are (of course) other things. I've mentioned Libre more than once because in terms of likely reward vs difficulty of getting it I think it rates really highly (should be really easy to get and you're likely to get a lot out of it).

There's also pumps, pumps together with CGM which provide various levels of automation. And some (much easier to get) things like smart pens: if you find yourself forgetting whether you've injected or forgetting how much, there are pens which can remember that.

Thanks for your post. that information is very useful to me (specially the smart pens) as My memory is not good and I have indeed forgotten or not been sure if I have injected. This has sometimes meant completely missing one or having a double dose. So if my pen can remember for me that would be great.🙂

 

[rebrascora]

Your only problem with smart pens might be whether they are available for porcine insulins. I would be lost without my dose reminder pens as I often can't remember. I don't think it is so much that my memory isn't so good but just that it has become so routine that I do it automatically and there for have very little conscious thought of having done it.

Is there a particular reason why you have remained with porcine insulin rather than upgrade to the more modern ones? ie an allergy etc. I know sometimes, when people have been using something for a long time which they feel works well for them and they trust, there can be a reluctance to change which is fair enough, but often there can be benefits in upgrading once you get over the challenge of embracing change. I also understand that there are a few people who need porcine because they react badly to "manufactured" insulin.

 

[Bruce Stephens]

Thanks for your post. that information is very useful to me (specially the smart pens) as My memory is not good and I have indeed forgotten or not been sure if I have injected. This has sometimes meant completely missing one or having a double dose. So if my pen can remember for me that would be great.🙂

There's a lower-tech version which works with a normal pen. I'm not sure whether these can be prescribed, but they're on sale: https://shop.diabetes.org.uk/collections/pen-clips-caps-1

There are higher tech ones too like those in this story https://www.pharmacymagazine.co.uk/news/smart-insulin-pens-available-on-nhs-for-the-first-time

I'm pretty sure there have been others available for longer? Maybe these are the first smart connected pens or something. Oh yes, that probably is the case, NovoPen Echo also remembers time and dose, but I guess just the last one (I think the Echo Plus has bluetooth so can record on your phone using some app).

Not sure whether these would work with porcine insulin. I'd assume the cartridges would be the same size so if your insulin is produced by Novo Nordisk then you'd be OK, but maybe it's some smaller company that specialises in porcine insulins, in which case you might be out of luck? (Though maybe one of the replacement caps might still fit.)

 

[RogerB]

There's a lower-tech version which works with a normal pen. I'm not sure whether these can be prescribed, but they're on sale: https://shop.diabetes.org.uk/collections/pen-clips-caps-1

There are higher tech ones too like those in this story https://www.pharmacymagazine.co.uk/news/smart-insulin-pens-available-on-nhs-for-the-first-time

I'm pretty sure there have been others available for longer? Maybe these are the first smart connected pens or something. Oh yes, that probably is the case, NovoPen Echo also remembers time and dose, but I guess just the last one (I think the Echo Plus has bluetooth so can record on your phone using some app).

Not sure whether these would work with porcine insulin. I'd assume the cartridges would be the same size so if your insulin is produced by Novo Nordisk then you'd be OK, but maybe it's some smaller company that specialises in porcine insulins, in which case you might be out of luck? (Though maybe one of the replacement caps might still fit.)

Thanks for this further info. I have definately been reluctant to change my insulin in the past mainly because I have always had very good warning signs of getting low blood sugar. When I first heard about so called human insulin and "manufactured" insulin there were a lot of stories about losing these warning signs which worried me. But now with all the other new tech. I don't think that would be such an issue and along with getting up to date with new equipment I am prepared to change to a modern insulin.

 

[trophywench]

Well, if it ain't broke most of us don't bother trying to fix it, do we? Hence I expect Roger falls into that category.

Wockhardt are the only producers in the UK, Lilly still produce it elsewhere. Far as I can tell, the only pen which the cartridges (from either of them) fit, is the Owen Mumford Autopen for which I don't think there's a memory device available - but Mumford's are normally extremely helpful when patients ring them (had a good friend who bought another type of device entirely from them and was subsequently helpful to them updating it and making it more user friendly.) So Roger - I'd give em a ring were I you.

Years ago there were only two choices of insulin - either bovine (ie from beef cattle) or porcine. They completelt stopped producing bovine a good many years ago, porcine is still produced but (I think, don't know) only usually prescribed for dogs with diabetes these days.

The only person I know who is still around with any experience of pumping animal insulin is @Pumper_Sue - who used bovine then anyway. Still uses a pump, but uses a modern insulin in it.

Similarly you'd be lucky to find staff who are even used to let alone expert at, titrating animal insulin doses these days - they've all retired if not popped their clogs.

Anyway - you really ought to ask your D clinic what new tech is available to you - I might tell you I get on great with the Bloggs XYZ pump - but unless that is one of the ones your clinic offer, you'd have to choose a different one that they can supply you and help you with instead.

 

[Bruce Stephens]

When I first heard about so called human insulin and "manufactured" insulin there were a lot of stories about losing these warning signs which worried me.

Yes, I was also worried, but as it happens it worked fine for me (this was with the older Actrapid and Insulatard insulins, and the newer ones (NovoRapid and Levemir) are so much better).

As you say, presuming you can get something that works for you (Libre 2 or similar) then it has (optional) low/high alarms, so unexpected hypos are much less of a risk. And just being able to see a graph makes management much easier (I was having lots of hypos a few years ago, and they all went at least partly because I started using Libre (before it had alarms)).

It's all certainly worth talking over with your team, anyway.

 

[trophywench]

I had terrible trouble with hypo signals when I swapped to Humulin and it didn't come back until I was transferred onto Novorapid as my shorter acting and Lantus as my longer lasting one. You're right - it was scary! Phew. I'm still pumping Novo, still here and still got my symptoms ta.

 

[Lucyr]

Thanks for your input, I'll bear that in mind, but I'm having just as much of a problem getting an appointment with my GP.

Can you not put an econsult request in to request libre rather than booking an appointment? Then just use the free trial in the meantime.

 

[trophywench]

Not all GP surgeries by any means, use econsult.