Type 1 Blood Glucose / No Insulin

[OLVE75]

Diagnosed Type 1 about 8 months ago and been on Basal / Bolus Insulin since. Not given myself any insulin at all over past few days, have ate and drunk normally even had more carbs that normal. My Blood Glucose levels have been stable, spiking but coming back into range within an hour or so. Don't feel 100% but Blood Glucose levels seem to be good...Assume that my Insulin need is no longer required perhaps?

 

[Leadinglights]

Diagnosed Type 1 about 8 months ago and been on Basal / Bolus Insulin since. Not given myself any insulin at all over past few days, have ate and drunk normally even had more carbs that normal. My Blood Glucose levels have been stable, spiking but coming back into range within an hour or so. Don't feel 100% but Blood Glucose levels seem to be good...Assume that my Insulin need is no longer required perhaps?

Welcome to the forum.
That does seem a bit unusual. How did your diagnosis come about, did you have the antibody tests and /or C-peptide tests to confirm your diagnosis.
How are you testing your blood glucose levels, do you have a CGM.?

 

[OLVE75]

Welcome to the forum.
That does seem a bit unusual. How did your diagnosis come about, did you have the antibody tests and /or C-peptide tests to confirm your diagnosis.
How are you testing your blood glucose levels, do you have a CGM.?

Yes had Antibody Tests which were massively raised and at first diagnosis blood glucose levels were at 12 all day long and would spike to 18+ after eating. HbA1c had been high for number of years..
Use a Libre 2 Plus for testing, although this is never accurate vs finger prick test on occasions

 

[Leadinglights]

Yes had Antibody Tests which were massively raised and at first diagnosis blood glucose levels were at 12 all day long and would spike to 18+ after eating. HbA1c had been high for number of years..
Use a Libre 2 Plus for testing, although this is never accurate vs finger prick test on occasions

If you are not taking insulin do you have a means of checking for ketones either ketone blood test strips and a compatible monitor or urine dip sticks to keep an eye out for elevated level.
When you say no insulin do you mean both basal and bolus.?

 

[Sally71]

It could be the weather, many people find that they need less insulin when it’s hot. Hot weather generally makes you more insulin sensitive, which means therefore you need less of it.
It could also be that you are still in the honeymoon period and that your pancreas can sometimes still make a bit of its own insulin.
If you are definitely type 1 then it’s highly unlikely that you’ll never need insulin again; however there are no hard and fast rules about how much you should need, everyone is different and things do change from time to time. So do whatever works; if that means no insulin at the moment then that’s fine, but it will probably change.
Tagging @Northerner who is a bit of a special case who stopped needing basal insulin, he might have some useful comments!

 

[OLVE75]

If you are not taking insulin do you have a means of checking for ketones either ketone blood test strips and a compatible monitor or urine dip sticks to keep an eye out for elevated level.
When you say no insulin do you mean both basal and bolus.?

Yes, do have Ketone testing stuff. Only used it once after being in the Gym (Weights) and BGL shot up to over 18.
No Basal or Bolus

 

[OLVE75]

It could be the weather, many people find that they need less insulin when it’s hot. Hot weather generally makes you more insulin sensitive, which means therefore you need less of it.
It could also be that you are still in the honeymoon period and that your pancreas can sometimes still make a bit of its own insulin.
If you are definitely type 1 then it’s highly unlikely that you’ll never need insulin again; however there are no hard and fast rules about how much you should need, everyone is different and things do change from time to time. So do whatever works; if that means no insulin at the moment then that’s fine, but it will probably change.
Tagging @Northerner who is a bit of a special case who stopped needing basal insulin, he might have some useful comments!

Thanks, been in the gym a lot lately as well. At diagnosis, was told pancreas not producing much insulin but also that it can be erratic sometimes..definitely Type 1 as all the Autoimmune Tests were positive and were done by both NHS and Privately..
Keep being told by various sources that you need to take Insulin and don't just stop, but surely it could be dangerous if you have too much in the body?

 

[Sally71]

Thanks, been in the gym a lot lately as well. At diagnosis, was told pancreas not producing much insulin but also that it can be erratic sometimes..definitely Type 1 as all the Autoimmune Tests were positive and were done by both NHS and Privately..
Keep being told by various sources that you need to take Insulin and don't just stop, but surely it could be dangerous if you have too much in the body?

If it’s dropping you too low, yes. Unlike other medications where you just take a fixed dose every day, it doesn’t really work like that with insulin. There are far too many variables which affect what you need. We’ve always been told to take as much insulin as you need to keep your blood sugars under control. If that turns out to be none for a while then so be it (worth checking ketones in that case though, you don’t want them getting out of control). It’s highly unlikely that you’ll never need it again though, this is probably just temporary. It’s true that you can’t survive without insulin so maybe your pancreas has woken up for a little while!

 

[OLVE75]

If it’s dropping you too low, yes. Unlike other medications where you just take a fixed dose every day, it doesn’t really work like that with insulin. There are far too many variables which affect what you need. We’ve always been told to take as much insulin as you need to keep your blood sugars under control. If that turns out to be none for a while then so be it (worth checking ketones in that case though, you don’t want them getting out of control). It’s highly unlikely that you’ll never need it again though, this is probably just temporary. It’s true that you can’t survive without insulin so maybe your pancreas has woken up for a little while!

Thanks, drop low sometimes but never below 5 even after meal dose and that's normally 4 hours later. Have very occasional Hypo!
Have always stuck to what been told by DSN / Consultant at hospital for Basal/Bolus regime, but thought I'd experiment (could have been potentially dangerous!) but wasn't expecting the outcome I have.
Think that is one of the problems with self-management, you don't really know what you should or shouldn't be doing at times!!

 

[Leadinglights]

Thanks, drop low sometimes but never below 5 even after meal dose and that's normally 4 hours later. Have very occasional Hypo!
Have always stuck to what been told by DSN / Consultant at hospital for Basal/Bolus regime, but thought I'd experiment (could have been potentially dangerous!) but wasn't expecting the outcome I have.
Think that is one of the problems with self-management, you don't really know what you should or shouldn't be doing at times!!

It is fairly early days for you still but by experimenting with caution is the only way you will learn how to self manage which is what most people have to do.
Some things will work for you others won't but the important thing is to keep safe.

 

[Tdm]

Have you checked your sugars with test strips? It could be a iffy cgm. We had a thread in here a while ago that was similar, poster stopped insulin, ended up in A and E as their cgm was wrong.
If the test strips confirm the cgm, and your sugar levels are fin, enjoy being injection free while it lasts but eventually i would expect y[ou'll need to inject again

 

[Inka]

Diagnosed Type 1 about 8 months ago and been on Basal / Bolus Insulin since. Not given myself any insulin at all over past few days, have ate and drunk normally even had more carbs that normal. My Blood Glucose levels have been stable, spiking but coming back into range within an hour or so. Don't feel 100% but Blood Glucose levels seem to be good...Assume that my Insulin need is no longer required perhaps?

@OLVE75 I experimented like that when I was first diagnosed. For example, I could eat a breakfast of around 50g carbs and be back in range at lunch - actually, not just in range, at the lower end of normal, eg 3.7 or 3.8.

However, like you I did spike after my food. It’s these spikes that are the issue. I told my consultant what I’d done and she said that those higher sugars (spikes) would just mean my beta cells died quicker. So, I went back onto insulin to a) protect my remaining beta cells better; and b) avoid the very real risk of DKA. As a result, I believe, my honeymoon lasted years not months.

 

[rebrascora]

People who develop Type 1 later in life often have a slower onset especially those people who don't get diagnosed through DKA. Their remaining beta cells are working flat out though to try to keep BG levels from going too high. After the introduction of injected insulin, these beta cells get a bit of respite and can then manage better, especially if the person has increased their exercise or changed their diet a bit, so in some cases depending upon how many beta cells they have left, they can manage a period of reduced insulin doses and very occasionally no insulin, but that is likely to end and can end suddenly if there are any factors which put those remaining beta cells under stress, like illness or lack of sleep or emotional stress, so it is important to monitor your levels closely during this time and be prepared to reintroduce insulin as soon as you see levels rising.

I am a big fan of encouraging people to experiment with their diabetes management including insulin doses provided that they keep a close eye on keeping themselves safe. To me this is how you become the expert in your own individual diabetes and it's management.

You may however find that you burn your remaining beta cells out quicker by stopping insulin, especially if you were not experiencing hypos when using it. Whether you think that is a good thing or a bad thing is up for debate. I found my honeymoon period very erratic so I was pleased to see the back of them, other people find those remaining beta cells create a sort of buffer which takes the edges off spikes in their levels. We are all different and what works for one may not work for someone else, so experimenting really is the only way, even if it means a few mistakes here and there as long as you are prepared for the mistakes and have a back up plan.

 

[OLVE75]

@OLVE75 I experimented like that when I was first diagnosed. For example, I could eat a breakfast of around 50g carbs and be back in range at lunch - actually, not just in range, at the lower end of normal, eg 3.7 or 3.8.

However, like you I did spike after my food. It’s these spikes that are the issue. I told my consultant what I’d done and she said that those higher sugars (spikes) would just mean my beta cells died quicker. So, I went back onto insulin to a) protect my remaining beta cells better; and b) avoid the very real risk of DKA. As a result, I believe, my honeymoon lasted years not months.

Exactly what has happened to me past few days, spikes after foods but back in range. Even experimented with 12 Jelly Babies to see what would happen. Massive spike to 20+ confirmed with finger prick, but then shot down to mid 5 range within couple of hours...
Feel like pushing things more to see the results and take some risks, obviously can't divulge to DSN / Consultant as imagine will not get a positive response.

 

[OLVE75]

People who develop Type 1 later in life often have a slower onset especially those people who don't get diagnosed through DKA. Their remaining beta cells are working flat out though to try to keep BG levels from going too high. After the introduction of injected insulin, these beta cells get a bit of respite and can then manage better, especially if the person has increased their exercise or changed their diet a bit, so in some cases depending upon how many beta cells they have left, they can manage a period of reduced insulin doses and very occasionally no insulin, but that is likely to end and can end suddenly if there are any factors which put those remaining beta cells under stress, like illness or lack of sleep or emotional stress, so it is important to monitor your levels closely during this time and be prepared to reintroduce insulin as soon as you see levels rising.

I am a big fan of encouraging people to experiment with their diabetes management including insulin doses provided that they keep a close eye on keeping themselves safe. To me this is how you become the expert in your own individual diabetes and it's management.

You may however find that you burn your remaining beta cells out quicker by stopping insulin, especially if you were not experiencing hypos when using it. Whether you think that is a good thing or a bad thing is up for debate. I found my honeymoon period very erratic so I was pleased to see the back of them, other people find those remaining beta cells create a sort of buffer which takes the edges off spikes in their levels. We are all different and what works for one may not work for someone else, so experimenting really is the only way, even if it means a few mistakes here and there as long as you are prepared for the mistakes and have a back up plan.

Thanks @rebrascora. Never had any proper explanation from Consultant/DSN on the Beta Cell destruction or how you can protect them or how things progress or change. Just seemed to have been told results of Autoimmune Tests etc, put on insulin regime, saw dietician (Carb Counting), told to continue being active (Gym) and see you for checks up now and again.

 

[OLVE75]

With regards to Long-Acting (Lantus) was told to increase or decrease if BGL rises or falls by 1.5mmol/L of the bedtime level before Breakfast. I always check BGL upon waking around 6am, with breakfast couple of hours later. Have always taken the upon waking BGL as the check.
Is this incorrect and should I wait until pre-breakfast?

 

[rebrascora]

Thanks @rebrascora. Never had any proper explanation from Consultant/DSN on the Beta Cell destruction or how you can protect them or how things progress or change. Just seemed to have been told results of Autoimmune Tests etc, put on insulin regime, saw dietician (Carb Counting), told to continue being active (Gym) and see you for checks up now and again.

I very much doubt any of us were told about such stuff. I learned most from the experienced people on this forum and experimenting on myself.

Basically the immune system kills off your insulin producing beta cells in Type 1 but for those of us who are more mature, either the immune system isn't as vigorous/efficient at killing them all or the beta cells are more widespread and perhaps better hidden than in younger patients, so they don't all get taken out at once and some can survive for many years. Any sort of illness which triggers the immune system will put you at risk of losing more of the remaining cells, so be on the look out for levels rising during and after an illness. I am pretty sure my first Covid jab triggered the loss of my remaining cells as my insulin needs rose very significantly in the 2 months after that and then remained reasonably stable since then so I suspect that was the end of my honeymoon period when my remaining beta cells bit the dust.

I think @Inka may have had a short spell after diagnosis and introduction of insulin when she was able to scale her insulin doses right down and may have not needed any for a short while..... Apologies if I have got that wrong.
My insulin needs increased in 3 clear steps in the 2 years after diagnosis, with the final step being after my first Covid jab. It would make sense since that jab will have stimulated my immune system.

Anyway, enjoy your spell of being injection free but do be prepared for it to end and it could end quite suddenly, so don't go on holiday without your insulin for instance.

 

[OLVE75]

I very much doubt any of us were told about such stuff. I learned most from the experienced people on this forum and experimenting on myself.

Basically the immune system kills off your insulin producing beta cells in Type 1 but for those of us who are more mature, either the immune system isn't as vigorous/efficient at killing them all or the beta cells are more widespread and perhaps better hidden than in younger patients, so they don't all get taken out at once and some can survive for many years. Any sort of illness which triggers the immune system will put you at risk of losing more of the remaining cells, so be on the look out for levels rising during and after an illness. I am pretty sure my first Covid jab triggered the loss of my remaining cells as my insulin needs rose very significantly in the 2 months after that and then remained reasonably stable since then so I suspect that was the end of my honeymoon period when my remaining beta cells bit the dust.

I think @Inka may have had a short spell after diagnosis and introduction of insulin when she was able to scale her insulin doses right down and may have not needed any for a short while..... Apologies if I have got that wrong.
My insulin needs increased in 3 clear steps in the 2 years after diagnosis, with the final step being after my first Covid jab. It would make sense since that jab will have stimulated my immune system.

Anyway, enjoy your spell of being injection free but do be prepared for it to end and it could end quite suddenly, so don't go on holiday without your insulin for instance.

@rebrascora Thanks for the explanation. Whilst on this thread just seen that after a late breakfast around 9:30 and no insulin, my BGL hasn't dropped below 11 in the last 4 and half hours. So maybe have just hit the wall!

 

[rebrascora]

Yes, I would not be happy with that. What has your Time in Range (TIR) been like since you stopped insulin? For me that would be key to informing me if I needed it and how much. Basically I don't worry about how much or how little insulin I need, it is all about keeping my TIR at an acceptable level. If I need to lose weight as I do now, then I will exercise more and that will reduce my basal needs but ultimately I reduce my doses to prevent hypos and increase my doses to prevent me going too high, so it is all about keeping in range as much as is reasonably possible and finding the right doses of the right insulin, at the right time to achieve that.

 

[rebrascora]

I should also say that I make that sound much easier than it actually is and in reality I don't get it right all the time..... none of us do.... but learning to adjust it at the appropriate times and having a rough idea of by how much a particular adjustment will impact your levels is just what you find with experience and trying different things.