What’s everyone planning now that Levemir is going?

[Lily21]

Hi @AlexTK,

I saw my consultant at the start of July and I was prescribed Tresiba. However, it's taken me a few weeks to pluck up the courage to start using it and I eventually started it yesterday!

Prior to starting Tresiba, I was on 11 units of Levemir AM and 1 unit PM. My consultant advised that I start Tresiba on a dose that was 10% lower than my total Levemir dose. However, based on everything that I had read about Tresiba, I didn't agree with that so yesterday I started on a Tresiba dose of 6 units in the morning (with much trepidation and some concern that this might actually be way too little!).

I did some fasting blood sugar readings during the day and my blood sugar was perfect. If I'm totally honest, this was a massive surprise as I thought it would run higher than usual all day. At 11pm last night, my fasting blood sugar fell to 2 mmol/L (too low). I had some dextrose tablets and got it back up to 5 mmol/L. It then stayed at 5 mmol/L for several hours before dropping to 3 mmol/L at 6am. After treating that low, my blood sugar went up to 5 mmol/L and at the time of typing this, it has stayed there so far!

As far as I'm aware, Tresiba is meant to build up in your body until it reaches a steady state. However, it seems that after only one day, 6 units is too high a dose for me. I was advised to lower the dose without delay if my blood sugar went low so I'm planning on giving a lower dose of Tresiba later on today. However, given the overlap that Tresiba creates, I expect more lows to come.

I don't have a dietician and so I wasn't given a transition plan. Do you have any idea when you will see your dietician and switch over to Tresiba? I'm interested to know what they say and how you get on.

Just to update everyone on this...

After taking 6 units of Tresiba on the first day and having hypos at night, I lowered my dose to 4 units and continued to get good daytime fasting blood sugar readings but early morning lows. Despite this, I stuck at it and continued giving 4 units of Tresiba each morning but with more food before bed to try and prevent the early morning lows (unfortunately, I still got lows, even with the extra food). After a few days of giving 4 units, my blood sugar levels seemed to stabilise and I finally stopped going low at night. The past two nights I have been cruising along at 5-7 mmol/L all night with no hypos as well as staying in range when doing fasting readings during the day. My issue now is that my carb ratios seem to have changed and when I do eat, I'm struggling with highs after meals! Overall though, I would say that things are looking better and I'm relieved to have seemingly got rid of the early morning lows (for now at least!).

Since starting this process, I've been documenting everything in great detail, including the type and dose of insulin I've taken, the exact time I've taken it, when it will have finished working, the type and amount of food I've eaten, what time I've eaten it, etc. I've used one sheet of A4 paper for each day and it's been really useful to be able to lay the sheets on the table side by side, compare each day and determine what has and hasn't worked well from one day to the next. I've been testing my blood sugar with fingerprick readings every 2-3 hours day and night to keep a really close eye on things (admittedly, I regret not getting a CGM before I started this!). I've also been eating similar meals each day.

I'll plough on, keeping an eye on the basal and focusing more on the bolus, and hope things continue to look up.

 

[EllieM]

Just to update everyone on this...

After taking 6 units of Tresiba on the first day and having hypos at night, I lowered my dose to 4 units and continued to get good daytime fasting blood sugar readings but early morning lows. Despite this, I stuck at it and continued giving 4 units of Tresiba each morning but with more food before bed to try and prevent the early morning lows (unfortunately, I still got lows, even with the extra food). After a few days of giving 4 units, my blood sugar levels seemed to stabilise and I finally stopped going low at night. The past two nights I have been cruising along at 5-7 mmol/L all night with no hypos as well as staying in range when doing fasting readings during the day. My issue now is that my carb ratios seem to have changed and when I do eat, I'm struggling with highs after meals! Overall though, I would say that things are looking better and I'm relieved to have seemingly got rid of the early morning lows (for now at least!).

Since starting this process, I've been documenting everything in great detail, including the type and dose of insulin I've taken, the exact time I've taken it, when it will have finished working, the type and amount of food I've eaten, what time I've eaten it, etc. I've used one sheet of A4 paper for each day and it's been really useful to be able to lay the sheets on the table side by side, compare each day and determine what has and hasn't worked well from one day to the next. I've been testing my blood sugar with fingerprick readings every 2-3 hours day and night to keep a really close eye on things (admittedly, I regret not getting a CGM before I started this!). I've also been eating similar meals each day.

I'll plough on, keeping an eye on the basal and focusing more on the bolus, and hope things continue to look up.

Just a thought, but given that tresiba is so flat, could it be that you now have less basal in your system than you used to (when the levemir was allowing you to have lower rates at night and higher during the day) so that is why you need more bolus during the day?

It might be instructive to wear a cgm and see what happens if you skip or delay a meal? In any case I'm sure that your records will allow you to adjust your carb ratios appropriately and congrats on both your record keeping and in managing to eliminate the nightly lows.


(edited for typos)

 

[Lily21]

Just a thought, but given that tresiba is so flat, could it be that you now have less basal in your system than you used to (when the levemir was allowing you to have lower rates at night and higher during the day) so that is why you need more bolus during the day?

It might be instructive to wear a cgm and see what happens if you skip or delay a meal? In any case I'm sure that your records will allow you to adjust your carb ratios appropriately and congrats on both your record keeping and in managing to eliminate the nightly lows.


(edited for typos)

Yes, absolutely! I think that the flat profile of Tresiba has caused my bolus needs to change somewhat. I've skipped or delayed a meal every day since I started on Tresiba to do a basal test and my blood sugars have remained steady in the absence of food and NovoRapid. I was advised to get the basal steady, particularly at night, and then focus on the bolus, so that's what I've been doing. My fingers are definitely suffering for it but it does look like my efforts are starting to pay off!

 

[Bobby105]

Hi @AlexTK,

I saw my consultant at the start of July and I was prescribed Tresiba. However, it's taken me a few weeks to pluck up the courage to start using it and I eventually started it yesterday!

Prior to starting Tresiba, I was on 11 units of Levemir AM and 1 unit PM. My consultant advised that I start Tresiba on a dose that was 10% lower than my total Levemir dose. However, based on everything that I had read about Tresiba, I didn't agree with that so yesterday I started on a Tresiba dose of 6 units in the morning (with much trepidation and some concern that this might actually be way too little!).

I did some fasting blood sugar readings during the day and my blood sugar was perfect. If I'm totally honest, this was a massive surprise as I thought it would run higher than usual all day. At 11pm last night, my fasting blood sugar fell to 2 mmol/L (too low). I had some dextrose tablets and got it back up to 5 mmol/L. It then stayed at 5 mmol/L for several hours before dropping to 3 mmol/L at 6am. After treating that low, my blood sugar went up to 5 mmol/L and at the time of typing this, it has stayed there so far!

As far as I'm aware, Tresiba is meant to build up in your body until it reaches a steady state. However, it seems that after only one day, 6 units is too high a dose for me. I was advised to lower the dose without delay if my blood sugar went low so I'm planning on giving a lower dose of Tresiba later on today. However, given the overlap that Tresiba creates, I expect more lows to come.

I don't have a dietician and so I wasn't given a transition plan. Do you have any idea when you will see your dietician and switch over to Tresiba? I'm interested to know what they say and how you get on.

@Lily21 i Lily Hi , what was your fear at using 1 unit. Im type 2 , my doc gave me 10 units as a starter dose 1/2 the Levemir. I went with that , as the previous dose of Levemir would still be in my body (maybe explain your low)and I'd Id rather go high than low. We worked together me trying 4 days on 10, then 12 with readings being shared. After a couple of weeks it was agreed by both that 16 Humulin was ok for me. Im stabilising that dose but seems ok

 

[Lily21]

@Lily21 i Lily Hi , what was your fear at using 1 unit. Im type 2 , my doc gave me 10 units as a starter dose 1/2 the Levemir. I went with that , as the previous dose of Levemir would still be in my body (maybe explain your low)and I'd Id rather go high than low. We worked together me trying 4 days on 10, then 12 with readings being shared. After a couple of weeks it was agreed by both that 16 Humulin was ok for me. Im stabilising that dose but seems ok

Hi @Bobby105,

I was concerned that starting on a Tresiba dose that was 10% less than my total daily Levemir dose would have given me too much Tresiba at night. It was clear that my daytime and nighttime Levemir needs were quite different, hence the very uneven split of Levemir that I was on. Given that Tresiba is very flat and pretty much gives you the same amount of insulin day and night, I felt that the dose suggested by my consultant would have provided me with way too much Tresiba at night, hence my decision to start on a much lower dose.

I'm still on 4 units of Tresiba once daily and it's working out okay. I've had no hypos at night but I'm having to increase my NovoRapid doses during the day, as discussed previously. I've been type 1 for over 30 years and Humulin I was the first insulin I was prescribed as a newly diagnosed diabetic. The consultant didn't consider Humulin I as an option for me this time around, preferring the long or ultralong acting insulins instead (Humulin I is an intermediate).

 

[Bobby105]

@Lily21 Thanks for the story . Type 1 sounds a complex. Im glad U R getting sorted and settled
I am now on Humulin 1 for Type 2 ( 1 dose) My GP (the lead diabetic on, rumoured to have diabetes himself ) started me on 50% of the Levemir dose at Humulin 10 units. He said that the Practice didnt mind some high results for a while. But it didnt go too high on 12. We played around with 10-14. I was given permission to do as i wanted as long as each trial was 4 -5 days in length. In the end we settled on 16. Im trialling that in case the hypos get out of hand but so far minimal or there was a reason.
I trusted his doc, he and another doc worked on my readings b4 the Humulin intro. I hadnt been happy with 6- 10, 12 . 15 readings tho my regular GP said it was ok. Im now on 4-7, tho a few 8 pop up. Along with a 3+ .Happier than Ive been for a loooong time About 6 yrs. Best wishes

 

[Lily21]

@Lily21 Thanks for the story . Type 1 sounds a complex. Im glad U R getting sorted and settled
I am now on Humulin 1 for Type 2 ( 1 dose) My GP (the lead diabetic on, rumoured to have diabetes himself ) started me on 50% of the Levemir dose at Humulin 10 units. He said that the Practice didnt mind some high results for a while. But it didnt go too high on 12. We played around with 10-14. I was given permission to do as i wanted as long as each trial was 4 -5 days in length. In the end we settled on 16. Im trialling that in case the hypos get out of hand but so far minimal or there was a reason.
I trusted his doc, he and another doc worked on my readings b4 the Humulin intro. I hadnt been happy with 6- 10, 12 . 15 readings tho my regular GP said it was ok. Im now on 4-7, tho a few 8 pop up. Along with a 3+ .Happier than Ive been for a loooong time About 6 yrs. Best wishes

You're lucky to have such good support from your GP @Bobby105! I was prescribed Tresiba in July and told "see you in January 2027"!
I do have diabetes specialist nurses that I can call if I have a problem but it's an answerphone service so it's case of "leave a message and we will get back to you!"... then you never know if/when they are going to call you back!

 

[Bobby105]

You're lucky to have such good support from your GP @Bobby105! I was prescribed Tresiba in July and told "see you in January 2027"!
I do have diabetes specialist nurses that I can call if I have a problem but it's an answerphone service so it's case of "leave a message and we will get back to you!"... then you never know if/when they are going to call you back!

I think I said the right thing to the right people at the right time. My GP is very kind but kept saying youre under control but I didnt feel it. Also theres been a reshuffle . The diabetes nurse left - i could never get the info I wanted. One of the GPs took over as Lead of the Diabetic team.. Ipointed out to my own GP that Levemir was phasing out. The lead doc said he'd take me on ..... so Im very fortunate . I am seriously deaf , so i had one phone call , the rest by Engage Consult messages. The doc raised my confidenced, and self worth , He got me to lower my readings via food change and we took about 6 weeks to change Levemir to i Humulin 1 Iwas treated with respect. I know something about science so once we started on changing Levemir over I knew how to go up from 10 units , down again Up and up again . Until we both agreed 16 was right - by checking readings. I was getting quite a few lows on Levemir , few symptoms. The lows are fewer now. I was very Lucky. And also Im type 2 not type 1