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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
isobelhackney said:
Hi all

I am new to this forum and new ish (June 2020) to type 1 diabetes. I have never met anyone else with type 1 so I thought this would be a good start!

Isobel
Click to expand...
Hello @isobelhackney ,

Thank you so much for joining our online community. There are loads of type of 1 diabetics on the forum. How are you managing with it so far?
 
Hi @isobelhackney and welcome to the forum. We're a friendly bunch on here so feel free to post your successes/not so good days. Ask any questions you need to, there will usually be someone who can answer, has been in a similar situation or can point you in the right direction to find what you need. I, too, have never met any other Type 1s so for me its been a lifesaver to celebrate or rant on the not so good days. How are you managing your diabetes eg MDI or pump? How are your levels?
 
Welcome to the forum @isobelhackney

How have things been for you. Must have been really tough to get a diagnosis of T1 in the upheaval of the pandemic!

Have you had much evidence of ‘honeymoon period’? For some this residual ‘help’ from the flagging pancreas can be a bit of a nightmare, while for others it can really smooth off the edges of their early experience of T1.

Living with T1 can be quite isolating, so it can be a real help to connect with others facing the same challenges day to day.

Keep asking questions, and let us know how you get on 🙂
 
Josh DUK said:
Hello @isobelhackney ,

Thank you so much for joining our online community. There are loads of type of 1 diabetics on the forum. How are you managing with it so far?
Click to expand...
Thanks for your message. I’m managing it well thanks. It was quite a shock initially as I hadn’t been feeling unwell and there were no obvious signs but now I have my head round it I am using it as an opportunity to exercise more! Would obviously rather don’t have to but I have found it easier now I am more organised with it!
 
everydayupsanddowns said:
Welcome to the forum @isobelhackney

How have things been for you. Must have been really tough to get a diagnosis of T1 in the upheaval of the pandemic!

Have you had much evidence of ‘honeymoon period’? For some this residual ‘help’ from the flagging pancreas can be a bit of a nightmare, while for others it can really smooth off the edges of their early experience of T1.

Living with T1 can be quite isolating, so it can be a real help to connect with others facing the same challenges day to day.

Keep asking questions, and let us know how you get on 🙂
Click to expand...
Hi. Thanks for your message. Yes it was quite hard being diagnosed during the pandemic especially as I was working front line with covid patients and I found the lack of support hard in the beginning. I quickly got my head round it and realised we have to manage it mostly on our own so I have had a steep learning curve. I think I am now coming out of my honeymoon period as I am needing bigger doses but I think it was a good introduction before learning more about the condition.

Thanks for your offer of support.

Isobel
 
freesia said:
Hi @isobelhackney and welcome to the forum. We're a friendly bunch on here so feel free to post your successes/not so good days. Ask any questions you need to, there will usually be someone who can answer, has been in a similar situation or can point you in the right direction to find what you need. I, too, have never met any other Type 1s so for me its been a lifesaver to celebrate or rant on the not so good days. How are you managing your diabetes eg MDI or pump? How are your levels?
Click to expand...
Hi

Thanks for your email. Yes it is good to know that there are people in a similar situation on here. I am using insulin pens not pump and I use a freestyle libre 2 which I have found great. How about you? For the past 16 months I have only been having long acting insulin once per day but they have increased that to twice per day so getting used to that at the moment.

Isobel
 
From what you've already said I guess your basal insulin must be Levemir - which was never supposed to work injected once per 24 hrs anyway - always meant to be twice a day! Lots of us like Levemir because it's just so much more easily adjusted than other longer acting insulins and you can match your body's needs a bit better with the two jabs not having to be either 12 hours apart or equal doses. With the Libre it does make 'Basal testing' to find out what you need when, much simpler anyway! (less of a drag than having to remember to fingerprick so often whilst doing the test) Which 'fast' acting insulin do you use?
 
Hi and welcome from me too.

So pleased you have found the forum as it is invaluable in it's support and depth of experience and knowledge. More so than my health care professionals and they are very good, but living with diabetes day by day and meal by meal is very different to the theory that health care professionals learn. It has been really interesting to discover how different we can all be but also to find the odd one or two people whose diabetes seems to be very similar to mine. The key to good management is becoming the expert in your individual diabetes and your health care professionals should be there to listen and support you with that rather than dictate, which sadly sometimes happens. Of course we all need a lot of guidance in the first instance, but I really wish that they would encourage you to experiment more rather than just follow rules.

Anyway, it sounds like you might have Levemir as your long acting (basal) insulin which is excellent as it allows so much more flexibility and adjustment. Splitting the dose into morning and evening can make a wealth of difference to your management and there is also the option of adjusting when you take it for finer tuning.... but that is more "advanced" diabetics once you get the balance of your split doses about right and learn when they need tweaking.

Which fast acting (bolus) insulin do you have and how are you managing with that?

Great that you have Libre! It makes such a difference to that steep learning curve when you can actually see what is happening all the time rather just 5 or 6 seconds of the day!

Have you been offered a DAFNE (or local equivalent) course? Really worth while if you can get on a face to face one particularly, as you get to spend a whole week with other Type 1s, which is a huge benefit as well as learning lots from the course itself and getting a lot of 1:1 support from the educators who are usually a highly qualified DSN and a diabetic dietician, but there is often also a talk by a consultant and visits from reps for Libre, pumps, BG meters etc.
There is a free online version which you can take called BERTIE, but if you can get on a real live DAFNE as well, I would highly recommend it.

Other than that, hang around the forum here whenever you can, ask questions and learn from all the vast experiences shared by members.
 
trophywench said:
From what you've already said I guess your basal insulin must be Levemir - which was never supposed to work injected once per 24 hrs anyway - always meant to be twice a day! Lots of us like Levemir because it's just so much more easily adjusted than other longer acting insulins and you can match your body's needs a bit better with the two jabs not having to be either 12 hours apart or equal doses. With the Libre it does make 'Basal testing' to find out what you need when, much simpler anyway! (less of a drag than having to remember to fingerprick so often whilst doing the test) Which 'fast' acting insulin do you use?
Click to expand...
I use novo rapid before meals. The two things I would appreciate explaining is how long before a meal should I dose ideally or is it different for everyone? And also what is basal testing? For the past 18 months I had one dose of levemir before bed and I now have a smaller dose in the morning. Do you stick to the same doses every day if this or be responsive to your reading (mine can change!)

Thanks.
 
Everyone is different with the Pre-bolus timing and different times of day usually need different lengths of time too.
Just to give you an extreme example, I needed an hour and a quarter for my Novo(not so)Rapid to get going before I ate breakfast and I needed 1-1.5 extra units to deal with Dawn Phenomenon.... so even if I decided not to have any breakfast, I still needed to inject that 1.5 units of NR to help my Levemir and keep my levels stable until lunchtime. Most people would hypo after 30 mins, some after 20mins. Later in the day, for lunch and evening meal, it would be about 20 mins for me. Now I am on Fiasp which is slightly quicker, I just need to inject 45mins in advance of breakfast and 15-20mins at other meals depending upon the meal, my BG level at the time and if I had done much exercise before. The way to do it is, if you get a large spike after the meal which eventually comes back down into range by the next meal, then cautiously increase the time by a few minutes each day until you see the spike starting to lessen. Libre is great for enabling you to see this. I tend to start eating my breakfast when Libre shows my levels are dropping and I am in the 5's or 6s. I try not to eat when my levels are in the 7s or above and my cut off is 8 because my insulin will be less effective at those levels and I will spike badly and need more insulin than I would otherwise, so I inject and keep scanning my Libre until it shows that the insulin is starting to work and then I eat.

As regards Levemir, most people find that they need more in the morning and less at night and I can sometimes go weeks and very occasionally months with no need for adjustment and then have to tweak my doses several times in a week. I am currently down to 22 units in the morning and 0 at night... ie once a day injection with it, because this is what my body needs at the moment. 2 weeks ago I was taking 24units in the morning and 5 units in the evening. My body varies quite a lot. Some people are much steadier. If I have done a lot of activity during the day I will usually drop my evening dose by a couple of units, then if I am less active the next day, I might step it back up 1 unit or give it another night and then increase it. Exercise has an impact on your basal needs for up to 48 hours afterwards. My daytime needs stay reasonable steady but my night time needs change the most after exercise..... that is just me. Other people react differently. You have to figure out what works best for you
 
rebrascora said:
Everyone is different with the Pre-bolus timing and different times of day usually need different lengths of time too.
Just to give you an extreme example, I needed an hour and a quarter for my Novo(not so)Rapid to get going before I ate breakfast and I needed 1-1.5 extra units to deal with Dawn Phenomenon.... so even if I decided not to have any breakfast, I still needed to inject that 1.5 units of NR to help my Levemir and keep my levels stable until lunchtime. Most people would hypo after 30 mins, some after 20mins. Later in the day, for lunch and evening meal, it would be about 20 mins for me. Now I am on Fiasp which is slightly quicker, I just need to inject 45mins in advance of breakfast and 15-20mins at other meals depending upon the meal, my BG level at the time and if I had done much exercise before. The way to do it is, if you get a large spike after the meal which eventually comes back down into range by the next meal, then cautiously increase the time by a few minutes each day until you see the spike starting to lessen. Libre is great for enabling you to see this. I tend to start eating my breakfast when Libre shows my levels are dropping and I am in the 5's or 6s. I try not to eat when my levels are in the 7s or above and my cut off is 8 because my insulin will be less effective at those levels and I will spike badly and need more insulin than I would otherwise, so I inject and keep scanning my Libre until it shows that the insulin is starting to work and then I eat.

As regards Levemir, most people find that they need more in the morning and less at night and I can sometimes go weeks and very occasionally months with no need for adjustment and then have to tweak my doses several times in a week. I am currently down to 22 units in the morning and 0 at night... ie once a day injection with it, because this is what my body needs at the moment. 2 weeks ago I was taking 24units in the morning and 5 units in the evening. My body varies quite a lot. Some people are much steadier. If I have done a lot of activity during the day I will usually drop my evening dose by a couple of units, then if I am less active the next day, I might step it back up 1 unit or give it another night and then increase it. Exercise has an impact on your basal needs for up to 48 hours afterwards. My daytime needs stay reasonable steady but my night time needs change the most after exercise..... that is just me. Other people react differently. You have to figure out what works best for you
Click to expand...
That is so helpful thanks. I have two young children and exercise 3-4 times per week so I can’t keep up with all the variables. Once I have sorted the kids out I rarely remembers to dose more than five mins before so I do spike. I am going to try and prioritise that. I have had a few hypos in the morning since I started on twice per day levemir. I felt like I had mastered things for A while and now it’s all changed again - I am Learning that this is normal.

Thanks so much for your advice. More than I’ve had in the whole time since diagnosis.
 
rebrascora said:
Hi and welcome from me too.

So pleased you have found the forum as it is invaluable in it's support and depth of experience and knowledge. More so than my health care professionals and they are very good, but living with diabetes day by day and meal by meal is very different to the theory that health care professionals learn. It has been really interesting to discover how different we can all be but also to find the odd one or two people whose diabetes seems to be very similar to mine. The key to good management is becoming the expert in your individual diabetes and your health care professionals should be there to listen and support you with that rather than dictate, which sadly sometimes happens. Of course we all need a lot of guidance in the first instance, but I really wish that they would encourage you to experiment more rather than just follow rules.

Anyway, it sounds like you might have Levemir as your long acting (basal) insulin which is excellent as it allows so much more flexibility and adjustment. Splitting the dose into morning and evening can make a wealth of difference to your management and there is also the option of adjusting when you take it for finer tuning.... but that is more "advanced" diabetics once you get the balance of your split doses about right and learn when they need tweaking.

Which fast acting (bolus) insulin do you have and how are you managing with that?

Great that you have Libre! It makes such a difference to that steep learning curve when you can actually see what is happening all the time rather just 5 or 6 seconds of the day!

Have you been offered a DAFNE (or local equivalent) course? Really worth while if you can get on a face to face one particularly, as you get to spend a whole week with other Type 1s, which is a huge benefit as well as learning lots from the course itself and getting a lot of 1:1 support from the educators who are usually a highly qualified DSN and a diabetic dietician, but there is often also a talk by a consultant and visits from reps for Libre, pumps, BG meters etc.
There is a free online version which you can take called BERTIE, but if you can get on a real live DAFNE as well, I would highly recommend it.

Other than that, hang around the forum here whenever you can, ask questions and learn from all the vast experiences shared by members.
Click to expand...
Yes I use levemir and novorapid pre meals. I am managing well with that although I would definitely benefit from going on one of the courses you suggested as I do a lot of guessing!
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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