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been told to come off insulin

wiserkurtious

wiserkurtious

Well-Known Member
Messages
368
Location
hull
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
diabetes :P having to eat food in moderation
So I've been suffering from alot of hypos since been diagnosed with type 1,probably!, at the start of july.when I left hospital they told me to take 10m in morning and 10 at night,but quickly after leaving hospital I've had my dose dropped. My dose as been 2m morning and 2m at night. yesterday my diabetic nurse told me to come off the morning insulin and take 2m at night before bed,and today shes told me to come off it all together to see how things go,should be fun.my blood sugars hadn't changed yesterday after taken off morning insulin,low 5s and a couple of 3.7s but i put that down to alot of excising,guess I'm in the so called honeymoon period,I had the GAD test done when I went to see the consultant last week so we ll see what happens soon enough
 
I would monitor that very closely and if you see yourself spiking into the 7s, i would go right back on it for meals.

The honeymoon period is great, and can be prolonged IF blood sugar levels are maintained in the normal range. Spike and elevated times outside of this strain the remaining beta cells and the toxically high glucose levels cause these remaining cells to die off - which is why the honeymoon phase ends.

If you keep your BG below 7.8mmol/L at all times you could, theoretically never leave the honeymoon period. Which means you would never, theoretically, loose anymore beta cells!

Keep and eye on your sugars, and try to eat low carb for as long as possible - if you act accordingly you may never leave the honeymoon phase, you could live the dream! lol

Best of luck!
 
Diamattic said:
I would monitor that very closely and if you see yourself spiking into the 7s, i would go right back on it for meals.

The honeymoon period is great, and can be prolonged IF blood sugar levels are maintained in the normal range. Spike and elevated times outside of this strain the remaining beta cells and the toxically high glucose levels cause these remaining cells to die off - which is why the honeymoon phase ends.

If you keep your BG below 7.8mmol/L at all times you could, theoretically never leave the honeymoon period. Which means you would never, theoretically, loose anymore beta cells!

Keep and eye on your sugars, and try to eat low carb for as long as possible - if you act accordingly you may never leave the honeymoon phase, you could live the dream! lol

Best of luck!
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amazing bit of info,ty for that.
 
Diamattic said:
I would monitor that very closely and if you see yourself spiking into the 7s, i would go right back on it for meals.

The honeymoon period is great, and can be prolonged IF blood sugar levels are maintained in the normal range. Spike and elevated times outside of this strain the remaining beta cells and the toxically high glucose levels cause these remaining cells to die off - which is why the honeymoon phase ends.

If you keep your BG below 7.8mmol/L at all times you could, theoretically never leave the honeymoon period. Which means you would never, theoretically, loose anymore beta cells!

Keep and eye on your sugars, and try to eat low carb for as long as possible - if you act accordingly you may never leave the honeymoon phase, you could live the dream! lol

Best of luck!
Click to expand...

Hi @Diamattic
Do you have an evidence base for this? (I would be very interested to have a read of anything you could point me to) - I assumed that being an auto-immune condition, that even though erratic blood glucose could impact on beta cell 'destruction', the cells themselves would be at the mercy of the immune system. It would be great to learn otherwise!:)
 
@Bebo321 - This is something that you can read in Dr. Bersteins publications, i do not have the exact journal reference or anything but it something that he mentions in books.

He says that the auto-immune systems destruction of the Beta cells of a T1D is not a single massive event, or even a continuous event. He claims that it is different in everyone however, some people have a smaller event that, say, kills 5% of their cells, this would not make them immediately diabetic, but would strain the remaining cells, and over time the remaining ones can slowly burn out and when enough have that person begins to experience high sugars, which kills more cells, and snow balls until they are diagnosed.

This sounds plausible to me, and as such i personally subscribe to this theory. This then means anyone recently diagnosed would be to maintain what insulin production they have left by keeping tight control. Where as in the past doctors believed that there was no chance, and would simply tell people to 'enjoy the honeymoon while you have it' rather then trying to maintain it.

He believes the immune 'attack' is single event, that effects everyone differently, someone loose a significant portion of their cells, and the rest die off over time, some dont loose as much and it takes much longer to become diabetic.

I hope that helps, but i suggest picking up his book. Its a cheesy name, but any advice from an 81 T1D who is also a medical doctor specializing in Diabetes is worth listing too carefully IMO lol
 
Diamattic said:
@Bebo321 - This is something that you can read in Dr. Bersteins publications, i do not have the exact journal reference or anything but it something that he mentions in books.

He says that the auto-immune systems destruction of the Beta cells of a T1D is not a single massive event, or even a continuous event. He claims that it is different in everyone however, some people have a smaller event that, say, kills 5% of their cells, this would not make them immediately diabetic, but would strain the remaining cells, and over time the remaining ones can slowly burn out and when enough have that person begins to experience high sugars, which kills more cells, and snow balls until they are diagnosed.

This sounds plausible to me, and as such i personally subscribe to this theory. This then means anyone recently diagnosed would be to maintain what insulin production they have left by keeping tight control. Where as in the past doctors believed that there was no chance, and would simply tell people to 'enjoy the honeymoon while you have it' rather then trying to maintain it.

He believes the immune 'attack' is single event, that effects everyone differently, someone loose a significant portion of their cells, and the rest die off over time, some dont loose as much and it takes much longer to become diabetic.

I hope that helps, but i suggest picking up his book. Its a cheesy name, but any advice from an 81 T1D who is also a medical doctor specializing in Diabetes is worth listing too carefully IMO lol
Click to expand...

nice insight of what you've just explained there,very interesting
 
@Diamattic you're experience of the honeymoon period and mine appear to be very different! Mine has been, and continues to be a daily hell (although I do have the added complication if steroids) and personally can't wait til my useless pancreas finally gives up and I can gain some control. Can I ask, how long was your honeymoon period and was it really as smooth and 'great' as you describe? If so, how did you achieve it?? !!!
 
I can't agree with Bernstein that "the immune attack" is a single event. Lots of Type 1s also develop other autoimmune disorders. There is a very high co morbidity with hypothyroidism, for example. Also, frozen shoulder. No doubt others.there was a discussion on here recently about how high blood sugar only correlates with a certain (small) percentage of complications. It is quite possible that even such "complications" of diabetes as heart failure are actually symptomatic of a continuing autoimmune attack.
 
Diamattic said:
He says that the auto-immune systems destruction of the Beta cells of a T1D is not a single massive event, or even a continuous event. He claims that it is different in everyone however, some people have a smaller event that, say, kills 5% of their cells, this would not make them immediately diabetic, but would strain the remaining cells, and over time the remaining ones can slowly burn out and when enough have that person begins to experience high sugars, which kills more cells, and snow balls until they are diagnosed.
Click to expand...
There is a great deal more evidence from the work done on diabetes vaccines that proinsulin (a precursor to insulin in the production of insulin) is what causes T-cells to attack the beta cells. Keeping insulin production low would therefore reduce this attack.

Whilst I believe that there is evidence in T2s that high blood glucose level is toxic to beta cells (I can't immediately find the research), I've not seen any research linking the same issue to T1s, indeed, that is mostly related to auto-immune destruction and not toxicity.

Whilst the ideas that Bernstein puts forward are very good for managing Diabetes, sometimes when I read his books I'm not clear where his evidence comes from either.
 
Diamattic said:
@Bebo321 - This is something that you can read in Dr. Bersteins publications, i do not have the exact journal reference or anything but it something that he mentions in books.

He says that the auto-immune systems destruction of the Beta cells of a T1D is not a single massive event, or even a continuous event. He claims that it is different in everyone however, some people have a smaller event that, say, kills 5% of their cells, this would not make them immediately diabetic, but would strain the remaining cells, and over time the remaining ones can slowly burn out and when enough have that person begins to experience high sugars, which kills more cells, and snow balls until they are diagnosed.

This sounds plausible to me, and as such i personally subscribe to this theory. This then means anyone recently diagnosed would be to maintain what insulin production they have left by keeping tight control. Where as in the past doctors believed that there was no chance, and would simply tell people to 'enjoy the honeymoon while you have it' rather then trying to maintain it.

He believes the immune 'attack' is single event, that effects everyone differently, someone loose a significant portion of their cells, and the rest die off over time, some dont loose as much and it takes much longer to become diabetic.

I hope that helps, but i suggest picking up his book. Its a cheesy name, but any advice from an 81 T1D who is also a medical doctor specializing in Diabetes is worth listing too carefully IMO lol
Click to expand...

Thanks for that explanation @Diamettic. I am familiar with Bernstein, but I am aware of later research that doesn't link the Beta cell destruction to elevated blood glucose readings (not that this is entirely plausible as an additive complication). My understanding is that the beta cells have a particular cell structure, and once any of these cells begin to break down, then for someone with T1D the body's own immune system begins an uncontrolled attack and break them down entirely. To be honest, I don't think anyone still knows what triggers the initial 'damage'.
Regardless, I think we can all agree that maintaining blood glucose levels as close to the normal range has to be good right?.:)
 
For anyone interested in the science behind diabetes, (I know there are some very well read people here) here's a link I found to a lecture by Prof. Roger Unger. It was of more interest to me for the study and science around T2D, but anyway I just thought I would share.:) (Apologies if it's already been posted elsewhere)
 
I seem to have not had a 'honeymoon' period, the only change in my Insulin, was when I left hospital and because I was more active, my sisters GP said to reduce Insulin by 2 units and that was it.
 
Robinredbreast said:
I seem to have not had a 'honeymoon' period, the only change in my Insulin, was when I left hospital and because I was more active, my sisters GP said to reduce Insulin by 2 units and that was it.
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Was the term 'Honeymoon Period' even around back when we were diagnosed, I don't recall it every being used although my DSN did explain post-diagnosis that my insulin requirements may go down and back up again.
 
tim2000s said:
Certainly when I was diagnosed in 1988, the term "Honeymoon Period" was used.
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Not when I was in hospital it wasn't used,or my sisters GP, but tbh I don't think I had a' honeymoon' as I said in my previous post. I knew nothing of the 'honeymoon period' until it was mentioned on this forum.
 
Can't say I can add anything to this thread at the moment but wanted to say I'm totally fascinated by the discussion! So please don't stop!! :-).
 
Update!! so yesterday i was told to come off insulin to see how things go. this morning I've just took morning bs and its 5.1,which is normal for me since diagnosis.off to do morning run i ll in form yous later on tonight to see how today goes,have fun guys :)
 
tim2000s said:
There is a great deal more evidence from the work done on diabetes vaccines that proinsulin (a precursor to insulin in the production of insulin) is what causes T-cells to attack the beta cells. Keeping insulin production low would therefore reduce this attack.
Click to expand...

Tim, this is *so* important. You've said this before, and it is a major incentive especially for LADAs because the autoimmune attack seems to be slower. Any links, or summaries?

Lucy
 
tim2000s said:
Whilst the ideas that Bernstein puts forward are very good for managing Diabetes, sometimes when I read his books I'm not clear where his evidence comes from either.
Click to expand...
Right, I've just been back and read his book, and he says that what he states is speculative, which is fair enough, and the entire passage ties in with what a lot of the research shows, in that insulin production encourages Beta cell attack, so reducing insulin production can prolong the honeymoon period. What he does do is place glucose toxicity as a higher priority in his list than beta cell attack though, somewhat confusingly, as in the version I am looking at, he doesn't deduce that the auto immune attack is a one off occurrence.

Much like @RuthW, I don't believe it's a one off either due to my tolerance to gluten decreasing as I have got older, and I suspect that this is linked.

I do question whether the Bernstein approach should be taken for children though, as when I look at the images of Dr B he always looks physically under-developed to me!
 
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