I was told my control is too good for my age.

[R T Donkin]

I wish the medics would treat my conditions, not my age. Just this afternoon, the DSN said that my range in target ( 85% ) is too good for my age. She said that people over 75 should be in range only 75% of time. (???)

My answer was that as I have very few hypos, I cannot see where the problem was. She said that insulin in the pump was suspended too often. When I suggested that it shows that the pump (t:slim X:2) was working correctly, preventing hypos. But apparently I was in the wrong. So, she reduced the the daily total amount of insulin in the pump, 'to keep me safe'. She now wants me to send her readings for two weeks when I have not made any corrections with a pen.

Clearly this is nonsense. My time in target is >91%. I am 76 and have been T1 for 53 yrs. If any clinician had said that to me I would have pushed hard for an explanation.. In the NHS some clinicians think their degree gives them academic superiority. Do some research and drop a line to the Medical Director.

 

[R T Donkin]

I wish the medics would treat my conditions, not my age. Just this afternoon, the DSN said that my range in target ( 85% ) is too good for my age. She said that people over 75 should be in range only 75% of time. (???)

My answer was that as I have very few hypos, I cannot see where the problem was. She said that insulin in the pump was suspended too often. When I suggested that it shows that the pump (t:slim X:2) was working correctly, preventing hypos. But apparently I was in the wrong. So, she reduced the the daily total amount of insulin in the pump, 'to keep me safe'. She now wants me to send her readings for two weeks when I have not made any corrections with a pen.

Some clinicians (yours?) think that people over 75 must be unable to manage their condition. Do as I do and question them for an explanation when they talk nonsense.

 

[R T Donkin]

I wish the medics would treat my conditions, not my age. Just this afternoon, the DSN said that my range in target ( 85% ) is too good for my age. She said that people over 75 should be in range only 75% of time. (???)

My answer was that as I have very few hypos, I cannot see where the problem was. She said that insulin in the pump was suspended too often. When I suggested that it shows that the pump (t:slim X:2) was working correctly, preventing hypos. But apparently I was in the wrong. So, she reduced the the daily total amount of insulin in the pump, 'to keep me safe'. She now wants me to send her readings for two weeks when I have not made any corrections with a pen.

Some clinicians (yours?) think that people over 75 must be unable to manage their condition. Do as I do and question them for an explanation when they talk nonsense.

I am in the middle of a similar discussion with my diabetic nurse. I'm 79 and have been T2 for many years (probably since 1967 but it wasn't diagnosed until 2010). My control is, apparently, too tight. I'm clearly not able to judge for myself (with the aid of a sensor) when my BG is dropping low. Obviously I'm just thick! So thick that I'm taking no notice. I'm not taking much bolus insulin these days - only if I eat something carby - reduced from 20-30 units every meal and reduced basal as well - from 60 to 48 units. I'm comfortable with that at present but intend to do "better", from my point of view. But then, I was told that I would never be able to lose weight either - by the dietician attached to the diabetes clinic - but I have managed to drop from almost 19 stone to just over 15 stone. Not good enough for me, but I'm getting there. Why can't these trained professionals see reason? I am me and I know what makes me feel better - they don't.

Back in the day my Diabetes Nurse told me that I was having too many minor hypos and eventually I would lose mental capacity. I did some research which evidenced that minor hypos have no effect on mental ability but 2 or 3 hypos/yr requiring 3rd party assistance 'may' be a problem. Some Nurses behave like this to attempt to show we idiotic patients how clever they are.

 

[jaywak]

My libre today is showing 92% in range for 7 days and 87% for 90 days , it also shows 29 hypo events for the 90 days which aren't actually hypos but lows , the last time I needed assistance for a low was over 20 yrs ago , i'me quite proud of the fact that I can still have this sought of control after 49 yrs and would be angry if I was told otherwise , out of interest how many hypo events do others have over this period of time?

 

[jaywak]

I've read that non diabetics bg can go down to 3.5 on occasions which would be reordered as a hypo on a libre but not actually causing our bodies any harm obviously not desirable if you're using insulin and could then go lower but not actually harmful to our bodies as such .

 

[Rachox]

Disclaimer, I know nothing about type 1 insulin pumps but what I do know is health staff are there to advise, not dictate. I would (and do) listen to their advice then decide if i want to follow it or continue with what’s working for me.

 

[oldgreymare]

My libre today is showing 92% in range for 7 days and 87% for 90 days , it also shows 29 hypo events for the 90 days which aren't actually hypos but lows , the last time I needed assistance for a low was over 20 yrs ago , i'me quite proud of the fact that I can still have this sought of control after 49 yrs and would be angry if I was told otherwise , out of interest how many hypo events do others have over this period of time?

This is brilliant TIR, but humbly I may take issue with your definition of a hypo - mine is anything showing a level below 3.9, although my endo will allow me to set the CGM alarm bar at 3.5 as I have completed a DAFNE course (also, and I have no idea why, this is might be the hypo threshold set for gestational diabetics).

"Assisted" hypos/lows is a completely separate categorisation - in UK seems to mainly impact fitness to drive. I have had 1 since diagnosis 16 years ago and none in the last 5 years.

Regarding how many hypos (below 3.9) events I experienced over the last 90 days, this is still more than I and my endo would like - ideally none, but definitely his targets are under 4% (low = below 3.9%), and ideally 0% (very low = under 3%).

I'm relatively new to pumping and this is still a big work in progress to improve my TIR while minimising any Time Below Range.

 

[jaywak]

This is brilliant TIR, but humbly I may take issue with your definition of a hypo - mine is anything showing a level below 3.9, although my endo will allow me to set the CGM alarm bar at 3.5 as I have completed a DAFNE course (also, and I have no idea why, this is might be the hypo threshold set for gestational diabetics).

"Assisted" hypos/lows is a completely separate categorisation - in UK seems to mainly impact fitness to drive. I have had 1 since diagnosis 16 years ago and none in the last 5 years.

Regarding how many hypos (below 3.9) events I experienced over the last 90 days, this is still more than I and my endo would like - ideally none, but definitely his targets are under 4% (low = below 3.9%), and ideally 0% (very low = under 3%).

I'm relatively new to pumping and this is still a big work in progress to improve my TIR while minimising any Time Below Range.

Even with my lows showing 29 lows below 3.9 in the last 90 days the libre shows this as only 2 % so according to the guidelines that's still fine .

 

[Andy_Nash]

I'm not a medic, and also not a pump user, although I do use a CGM. Like you, initially I found the advice you were given surprising, but equally I see that some are suggesting reasons why it may have been sound. Obviously it's for you to decide whether to take the advice or not, but one approach could be to write to the nurse detailing why you don't understand her recommendation, then hopefully she would either write back to you or arrange another appointment to discuss. If you're still doubtful, you could seek a second opinion from another medic.

 

[R T Donkin]

My libre today is showing 92% in range for 7 days and 87% for 90 days , it also shows 29 hypo events for the 90 days which aren't actually hypos but lows , the -last time I needed assistance for a low was over 20 yrs ago , i'me quite proud of the fact that I can still have this sought of control after 49 yrs and would be angry if I was told otherwise , out of interest how many hypo events do others have over this period of time?

Hi Jaywak, My last 90 days TIT is 89%%, 51 low glucose events in last 90 days, 1 hypo requiring external assistance in last 4 yrs, diagnosed T1 when taking Cambridge finals in 1970, last 3 yrs HbA1C are 5.6, 5.8, 5.7. Like you I run tight control on BS as I think avoiding the Long Term effects is more important than avoiding lows., and my research says many minor hypos do not inhibit brain performance. Many clinicians think people over 70 are incapable of intelligent thought!

 

[Deleted member 527103]

Disclaimer, I know nothing about type 1 insulin pumps but what I do know is health staff are there to advise, not dictate. I would (and do) listen to their advice then decide if i want to follow it or continue with what’s working for me.

Apologies for the slight aside but may I commend you for your correct use of "advise" and "advice"?
I often have to hold my inner grammar pedant back from making corrections to common grammatical mistakes.
But there is no reason to hold it back this time.

 

[Rachox]

Apologies for the slight aside but may I commend you for your correct use of "advise" and "advice"?
I often have to hold my inner grammar pedant back from making corrections to common grammatical mistakes.
But there is no reason to hold it back this time.

*whispers to @In Response , I have an inner grammar pedant too!

 

[Annb]

Hi Jaywak, My last 90 days TIT is 89%%, 51 low glucose events in last 90 days, 1 hypo requiring external assistance in last 4 yrs, diagnosed T1 when taking Cambridge finals in 1970, last 3 yrs HbA1C are 5.6, 5.8, 5.7. Like you I run tight control on BS as I think avoiding the Long Term effects is more important than avoiding lows., and my research says many minor hypos do not inhibit brain performance. Many clinicians think people over 70 are incapable of intelligent thought!

I'm well over 70 and am the first to admit that my cognitive processes are not quite as sharp as they once were. That may be the result of 50 years of undiagnosed diabetes and BGs running too high for much of that time. Definitely not because of too many lows over that time. The danger of hypos seem to be the reason that my DN wants me to eat carbs and to keep my readings in the 8 - 10 range. The only time I have even low readings is when I have misjudged the amount of insulin I should take for carb eating or when I have been forced into an unprepared fast for too many hours. As long as I can keep off carbs, I can keep off insulin - other than a basal dose. Result - stable 5 or 6's.

My BG does, occasionally, drop down into the 4's and even to 3.8 or .9. That's manageable and I can get it up a bit fairly easily. The Libre is very helpful in recognising these lows and highs though. I have only had one reading in the upper 3's in the last 3 months; a few in the 11's. MY Libre tells me that I have been in range 95% of the time.

The regime I am working with seems to be fine for me so, whatever the nurse says, I'm sticking with it, until it doesn't work any more.

 

[oldgreymare]

I've read that non diabetics bg can go down to 3.5 on occasions which would be reordered as a hypo on a libre but not actually causing our bodies any harm obviously not desirable if you're using insulin and could then go lower but not actually harmful to our bodies as such .

@jaywak, Totally agree - and as I mentioned above I believe 3.5 is the recommended hypo threshold for gestational diabetics, which once diagnosed, will be on insulin. I suspect those suffering from the rare but increasingly accepted condition of reactive hypoglycaemia may also have insights re what BG levels can start to impact our performance.

It is still very early days in the UK for widespread use of CGMs by T1s, so hopefully as more data is collected, attitudes to tight TIRs and lower HBA1cs will gradually change and the older "defensive" advice to run BG levels above non diabetic levels both to avoid hypos and also to avoid hypo unawareness (so disastrous if one needs to drive) will be consigned to history.

 

[jaywak]

To be honest and I hope I don't sound smug by saying this but I don't really have to try that hard to get these results , before Libre I was probably way off the mark when I look at what I used to eat and drink , Libre has definitely helped me tidy up my act and I class myself as very lucky that I've got here .

 

[Fairygodmother]

My 90 day Libre results:

> 13.3. 0%
8.3-13.3. 17%
4.8-8.2 67%
3.9-4.7. 11%
<3.9. 3%

T1 D for 54 years; cognitive decline? I’m hoping none, but you’d have to ask my husband, if you trust his answer.

Not sure about Libre’s cognitive ability, or have my maths skills declined?

 

[oldgreymare]

My 90 day Libre results:

> 13.3. 0%
8.3-13.3. 17%
4.8-8.2 67%
3.9-4.7. 11%
<3.9. 3%

T1 D for 54 years; cognitive decline? I’m hoping none, but you’d have to ask my husband, if you trust his answer.

Not sure about Libre’s cognitive ability, or have my maths skills declined?

According to my addition, you have 'lost' 2% that is not attributed to any BG range (could just be rounding effects between the ranges). I only use Dexcom, so not sure how/why this happened with Libre readings. The internationally recommended definition for time in range BGs is 10 - 3.9 mmol with a target of 70+% TIR. Looks like you're easily achieving this!

 

[jaywak]

Sorry my Libre readout seems different to yours , today it is showing above 13.3 as 1% , 10.1 -13.3 as 7 % ,3.9 -10.1 as 91 % and below 3.9 as 1% , low glucose events are 2 for 7 days 4 for 14 days 7 for 30 days and 29 for 90 days , my consultant seemed quite happy with these results last month .

 

[Fairygodmother]

Sorry my Libre readout seems different to yours , today it is showing above 13.3 as 1% , 10.1 -13.3 as 7 % ,3.9 -10.1 as 91 % and below 3.9 as 1% , low glucose events are 2 for 7 days 4 for 14 days 7 for 30 days and 29 for 90 days , my consultant seemed quite happy with these results last month .

I think Libre readouts are based on the range you set, mine’s 4.8 - 8.2

 

[Fairygodmother]

Great results @jaywak