Hello, new here, type 1 for 15 years

[Ichigo Daisuki]

Hello fellow diabetes warriors! My name is Maria and I'm a northerner who was diagnosed in 2007. I recently realised that connecting with fellow diabetics may be a good way of feeling supported. Yesterday was the second time in 15 years that I forgot to take Levemir and didn't notice until 6 hours later. I was dumbstruck, not knowing what to do for fear of going super low today. My hba1c is too low as well and I don't know how to fix it. Happy to be here and help eachother 🙂

 

[Bruce Stephens]

Yesterday was the second time in 15 years that I forgot to take Levemir and didn't notice until 6 hours later.

Welcome. So that's twice in ~11000 occasions, which is pretty amazing.

It is annoying, and 6 hours is an especially annoying time: if it's 3 hours then you're a bit late and can just inject then, and if it's 9 hours then it's surely too late so you have to just skip that dose.

I don't think I have any concrete suggestions. I think we all develop our own routines and habits to help us remember, and I suspect they're all different.

If you're not already using a Novopen 5 or 6 (or Novopen Echo or Echo Plus) then consider switching. They won't help you remember but if you worry that you might have already injected you can easily check.

 

[rebrascora]

Hi and welcome.

Not sure I could have survived 15 years without this forum... at least not with my sanity intact, so well done for getting this far without the forum but I am sure you will find it an enormous benefit being here. There is a huge wealth of knowledge and experience here to tap into as well as just connecting with people who understand the relentlessness of diabetes management and can empathize.

Sorry to hear you had a bit of a wobble yesterday. Happens to the best of us from time to time. In that situation I would probably have used my fast acting insulin to do a correction to bring me back into range and injected half my usual Levemir dose (assuming you use Levemir as a split dose) or 3/4 of the usual dose if you just inject once a day.

Do you not have Freestyle Libre or other CGM with high and low alarms. I am pretty sure my high alarm would have gone off long before 6 hours after forgetting my Levemir..... but perhaps you don't have a high alarm set?

Which fast acting insulin do you use?

Have you done DAFNE or similar intensive education course? It really is a useful course for giving you confidence but also connecting with other Type 1s in person is a massive benefit.

You mention that you are a northerner.... How far north? I am in County Durham so perhaps not too far away geographically.

 

[Inka]

Welcome @Ichigo Daisuki 🙂 This forum is fantastic for support and makes you feel as though you’re amongst friends who understand. I hope you like it as much as I do.

I’ve had Type 1 almost 30 years and I still forget my boluses/mealtime insulin! It’s so easy to do. The only reason I don’t forget my basal is that I’m on a pump. If I wasn’t, no doubt I’d have forgotten that too!

 

[everydayupsanddowns]

Welcome to the forum @Ichigo Daisuki

Glad you have joined us!

Is there a smart pen that would fit with Levemir? Or even one of those replacement pen caps which are able to tell you when the last dose was given - that way if you were u sure you could always check.

What makes you thunk your HbA1c is too low? Are you worried about the frequency of mild hypos you are having? Are you wearing a sensor eg Libre2? What sort of time in range and time below 4 are you seeing over 30-90 days (if you are happy to share)?

 

[Bruce Stephens]

Is there a smart pen that would fit with Levemir?

Yes, the Novopens.

 

[everydayupsanddowns]

Yes, the Novopens.

Good to hear!

I had terrible trouble forgetting whether I had dosed or not in my last years on MDI. So much so that I switched to Humalog just so I could get a memoir pen with a memory (the only dose-recording pen that was available at the time!)

 

[Tdm]

Good to hear!

I had terrible trouble forgetting whether I had dosed or not in my last years on MDI. So much so that I switched to Humalog just so I could get a memoir pen with a memory (the only dose-recording pen that was available at the time!)

Used to take a photo on my phone of my pen with the dialed amount before i injected, which helped. I now have a display on my novorapid pen. I always take the same basal amount so don't tend to have problems with that

 

[SB2015]

Welcome to the forum. I am a year behind you Having been diagnosed in 2008.
Glad that you have found us and look forward to hearing more from you.

You have done well with so few muddles in the time since your diagnosis. I managed to put my insulins in the wrong pen and got some very confusing outcomes before I realised what I had done. I found the pens with the time since jab shown were very helpful, for those moments of ‘did I or didnt I’ but as others have said it doesn’t help you remember. Would an alarm in your phone help?

 

[Ichigo Daisuki]

Welcome. So that's twice in ~11000 occasions, which is pretty amazing.

It is annoying, and 6 hours is an especially annoying time: if it's 3 hours then you're a bit late and can just inject then, and if it's 9 hours then it's surely too late so you have to just skip that dose.

I don't think I have any concrete suggestions. I think we all develop our own routines and habits to help us remember, and I suspect they're all different.

If you're not already using a Novopen 5 or 6 (or Novopen Echo or Echo Plus) then consider switching. They won't help you remember but if you worry that you might have already injected you can easily check.

Thank you very much for your advice. I had never heard of Nobopen echo so I'll ask my gp if they're willing to prescribe it, they sound amazing! I ended up bolus correcting instead, which if probably safer?

 

[Ichigo Daisuki]

Good to hear!

I had terrible trouble forgetting whether I had dosed or not in my last years on MDI. So much so that I switched to Humalog just so I could get a memoir pen with a memory (the only dose-recording pen that was available at the time!)

I'm glad it works for you. Unfortunately, for some reason, humalog hurts so much it made me coldsweat, but I've seen pen caps you can get that are supposed to show you.

 

[Ichigo Daisuki]

Welcome to the forum. I am a year behind you Having been diagnosed in 2008.
Glad that you have found us and look forward to hearing more from you.

You have done well with so few muddles in the time since your diagnosis. I managed to put my insulins in the wrong pen and got some very confusing outcomes before I realised what I had done. I found the pens with the time since jab shown were very helpful, for those moments of ‘did I or didnt I’ but as others have said it doesn’t help you remember. Would an alarm in your phone help?

Thank you so much for your reply 🙂. That sounds like an awful lot of stress. I once injected the wrong insulin and had to eat sweets for hours to avoid the hospital. It doesn't help that your adrenaline spikes with the fear either. Alarm may help if I stick to the same meal times, but it tends to differ a bit. How has your routine changed over the years?

 

[rebrascora]

There are many advantages to the NovoPen Echo reusable pens. They are better for the environment, the cartridges for them take up less space in the fridge, they allow half unit dosing, they feel like a real quality bit of kit and most importantly they have the memory which I too need to use rather more frequently than I would like. 🙄

You will need to have your prescription changed to insulin cartridges as well as getting the pens prescribed and you either need a spare in case of breakage or an occasional Flexpen on standby. It is extremely unlikey that a reusable pen would break because they are really sturdy but you rely on insulin to keep you alive so you need a back up means of delivering it if your device fails.

They come in either red or blue so if you are getting one for basal and one for bolus, do make sure the pharmacist knows to order one of each colour. You don't want both your insulins in the same colour pen.

 

[Ichigo Daisuki]

Welcome to the forum @Ichigo Daisuki

Glad you have joined us!

Is there a smart pen that would fit with Levemir? Or even one of those replacement pen caps which are able to tell you when the last dose was given - that way if you were u sure you could always check.

What makes you thunk your HbA1c is too low? Are you worried about the frequency of mild hypos you are having? Are you wearing a sensor eg Libre2? What sort of time in range and time below 4 are you seeing over 30-90 days (if you are happy to share)?

Hello 🙂 Thank you very much for your reply. I've never heard of the echo pens, but they sound amazing. I'll have to ask if my gp will prescribe them. My endo told me, my HbA1c is 28.
I go hypo maybe 3 times a week and my comfort zone is between 4 and 5, so I have very little margin for exercise, stress, temperature increase etc.
I've been told to aim for 48 but I'm having issues with aiming for 6mmol on average as they suggested, it makes me sluggish. Some of my hypos are very low, like 2.5 if I dose as nornal and then exercise and take a hot bath. It's not always easy to factor in. Any advice?

 

[Ichigo Daisuki]

There are many advantages to the NovoPen Echo reusable pens. They are better for the environment, the cartridges for them take up less space in the fridge, they allow half unit dosing, they feel like a real quality bit of kit and most importantly they have the memory which I too need to use rather more frequently than I would like. 🙄

You will need to have your prescription changed to insulin cartridges as well as getting the pens prescribed and you either need a spare in case of breakage or an occasional Flexpen on standby. It is extremely unlikey that a reusable pen would break because they are really sturdy but you rely on insulin to keep you alive so you need a back up means of delivering it if your device fails.

They come in either red or blue so if you are getting one for basal and one for bolus, do make sure the pharmacist knows to order one of each colour. You don't want both your insulins in the same colour pen.

Hello and thank you very much for your reply . They do sound amazing, if my gp will prescribe them. I'm just worried about forgetting the colours as I've been on insulins with orange and green pens for so long. Do you use the same type of needles? Because my gp refuses to prescribe any other needles than GlucoRX finepoint. I use a 4mm needle.

 

[rebrascora]

Thank you so much for your reply 🙂. That sounds like an awful lot of stress. I once injected the wrong insulin and had to eat sweets for hours to avoid the hospital. It doesn't help that your adrenaline spikes with the fear either. Alarm may help if I stick to the same meal times, but it tends to differ a bit. How has your routine changed over the years?

I can exactly relate to this. I inject my basal and bolus before I get out of bed on a morning and it wasn't until I was putting my pen back in the case that I realized it was the wrong colour pen in my hand and I had just injected 24 units of Fiasp!! As you say the panic and adrenaline is the big problem. I felt sick with it and struggled to eat what I needed to to keep me afloat. I also follow a low carb way of eating so I was struggling to find things in the house to eat other than hammering my hypo supplies. Just thankful that I realised what I had done straight away as that amount of Fiasp could easily have put me into a very long sleep. 😱 if I hadn't been prepared to counteract it. Hopefully it will be a long time before I do that again!

 

[Ichigo Daisuki]

Welcome @Ichigo Daisuki 🙂 This forum is fantastic for support and makes you feel as though you’re amongst friends who understand. I hope you like it as much as I do.

I’ve had Type 1 almost 30 years and I still forget my boluses/mealtime insulin! It’s so easy to do. The only reason I don’t forget my basal is that I’m on a pump. If I wasn’t, no doubt I’d have forgotten that too!

Hello and thank you so much for your reply I'm glad to hear that it's not unusual to forget once in a while. I beat myself up for days if I feel to keep within my comfort range, but it's not like we're robots, so what can you do ‍♀️

 

[rebrascora]

Hello and thank you very much for your reply . They do sound amazing, if my gp will prescribe them. I'm just worried about forgetting the colours as I've been on insulins with orange and green pens for so long. Do you use the same type of needles? Because my gp refuses to prescribe any other needles than GlucoRX finepoint. I use a 4mm needle.

Yes, needles are the same and I use the GluxoRx needles too. I just swapped my green Levemir pen to blue and my orange NovoRapid to red (although I now use Fiasp) They were similar enough to the original colours to remember.

 

[Ichigo Daisuki]

Hi and welcome.

Not sure I could have survived 15 years without this forum... at least not with my sanity intact, so well done for getting this far without the forum but I am sure you will find it an enormous benefit being here. There is a huge wealth of knowledge and experience here to tap into as well as just connecting with people who understand the relentlessness of diabetes management and can empathize.

Sorry to hear you had a bit of a wobble yesterday. Happens to the best of us from time to time. In that situation I would probably have used my fast acting insulin to do a correction to bring me back into range and injected half my usual Levemir dose (assuming you use Levemir as a split dose) or 3/4 of the usual dose if you just inject once a day.

Do you not have Freestyle Libre or other CGM with high and low alarms. I am pretty sure my high alarm would have gone off long before 6 hours after forgetting my Levemir..... but perhaps you don't have a high alarm set?

Which fast acting insulin do you use?

Have you done DAFNE or similar intensive education course? It really is a useful course for giving you confidence but also connecting with other Type 1s in person is a massive benefit.

You mention that you are a northerner.... How far north? I am in County Durham so perhaps not too far away geographically.

Hello and thank you so much for your reply I can see that, this forum seems amazing. I use one dose of Levemir in the evening and I use Novorapid before meals. Sadly can't use the cgm as I'm allergic to the glue.
Not done DAFNE, but I eat a low carb diet already.
Aye, I live in Pendle

 

[rebrascora]

Hello 🙂 Thank you very much for your reply. I've never heard of the echo pens, but they sound amazing. I'll have to ask if my gp will prescribe them. My endo told me, my HbA1c is 28.
I go hypo maybe 3 times a week and my comfort zone is between 4 and 5, so I have very little margin for exercise, stress, temperature increase etc.
I've been told to aim for 48 but I'm having issues with aiming for 6mmol on average as they suggested, it makes me sluggish. Some of my hypos are very low, like 2.5 if I dose as nornal and then exercise and take a hot bath. It's not always easy to factor in. Any advice?

Sounds like you need to lighten up on yourself and hopefully engaging with us lot here on the forum will help you to realize that you are being too strict with yourself and that you need to ease up a bit. What sort of time in range do you have on your Libre/CGM. 3 hypos a week doesn't seem too bad although really low hypos in the 2s are not good. Have you used the time in range feature as this can really help to set more realistic targets.