"Best" things doctors have said to you

purplesally

Active Member
Messages
34
Type of diabetes
Type 1
This happened 30 years ago when I was first diagnosed so hopefully it wouldn't happen now...

Went to the GP to get test results (urine test for diabetes!) and was told yes I was diabetic. My parents were given the phone number for the diabetic clinic at the local children's hospital and told to ring tomorrow for an appointment, but told they might not be open that week as it was Jan 2nd. My parents rang as soon as we got in and the DSN couldn't believe what she was hearing and told them to take me in to A&E pronto - my blood was so high on arrival that they told us if I'd had my hot milk with lots of sugar for bed as normal I would probably not have been alive in the morning!

I had been at the panto that afternoon and had sweets and a massive coke so it was a particularly bad day but it's scary to think how close it was.

Unfortunately still happening today. Late last year I was diagnosed as type 2. Shortly after I spent a week on the sofa unable to eat, drink and eventually move. Ambulance called, paramedic said I didn't need hospital and arranged for GP to call next day. GP visited and said I just needed to drink water, my friend insisted that I was seen by the hospital and an ambulance arrived 5 hours later, assuming the GP had said something as when the paramedics were taking me to the ambulance and my legs kept giving way she kept telling me off. Was put on a chair in A&E and left. Luckily a observant nurse realised I couldn't hold myself up, within 5 minutes I was on a bed, within 30 minutes I was on the ward with drips, insulin pumps and heart monitor with testing every 2 hours for the next 4 days and a new diagnosis of type 1. I spent a total of 8 days in hospital and was told by the registrar that I was lucky my friend insisted that I was brought in as I was very ill.
 

phdiabetic

Well-Known Member
Messages
880
Type of diabetes
Type 1
Treatment type
Insulin
Then you are always going to fail. That range is practically impossible to stay inside, diabetic or not. It is a target, not a limit.

Agree with this, it is just not possible to stay in this range even if you do everything perfectly - your body is like a random number generator, you don't always know what's going on and it's impossible to predict what will happen.

@NoKindOfSusie it's ok to be outside the range you want, and it's ok to call it a failure. But you have to be able to accept the failures, move on from them and learn from them. There are also degrees of failure. If my blood sugar is 9, it is a little bit high so I'm a little bit disappointed. If my blood sugar is 13, it is catastrophically high and is consequently a huge failure. But having bad blood sugars doesn't make ME a failure. As long as I tried my best and gave it the best effort I could, I never beat myself up about bad numbers. You can simultaneously recognise something is bad, but realise that you couldn't reasonably have prevented it. Then move on and do your best to treat it! If you did make a mistake, then acknowledge what it was so that you do better next time - but don't give up!
 

Mike d

Expert
Messages
7,997
Type of diabetes
Type 2
Treatment type
Other
Dislikes
idiots who will not learn
Being outside a range you have been told to be inside is not a compromise. It's a failure.

I'm told to be between 5 and 7. I am often outside that range. That is not a compromise. That is a failure. You can make all the excuses you like, the damage will still happen.

You're so positive. Carry on
 

SueJB

Well-Known Member
Messages
3,316
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
cold weather
You got told wrong then didn't you! A quick Google and you will find the ranges.

Don't take the lack of knowledge of 1 DSN as your knowledge base going forward.
I was told by the consultant yesterday and not Dr Google that I should ideally keep between 5-8
 

Draco16

Well-Known Member
Messages
182
Type of diabetes
Type 1
Ideally is the key word there.

Dr Google's first result points right back to this site.

https://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html

The NICE guidelines...

For people with diabetes, blood sugar level targets are as follows:
  • Before meals: 4 to 7 mmol/L for people with type 1 or type 2 diabetes
  • After meals: under 9 mmol/L for people with type 1 diabetes and under 8.5mmol/L for people with type 2 diabetes
NKOS has been told she MUST be between 5-7. Incorrect.

You've been told you should ideally be between 5-8. This is fine, consistent with NICE, as long as understood that there is additional range available either side. (Obviously they may have tailored your advice if eg you have poor hypo awareness).
 

Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
Treatment type
Pump
Agree with this, it is just not possible to stay in this range even if you do everything perfectly - your body is like a random number generator, you don't always know what's going on and it's impossible to predict what will happen.

@NoKindOfSusie it's ok to be outside the range you want, and it's ok to call it a failure. But you have to be able to accept the failures, move on from them and learn from them. There are also degrees of failure. If my blood sugar is 9, it is a little bit high so I'm a little bit disappointed. If my blood sugar is 13, it is catastrophically high and is consequently a huge failure. But having bad blood sugars doesn't make ME a failure. As long as I tried my best and gave it the best effort I could, I never beat myself up about bad numbers. You can simultaneously recognise something is bad, but realise that you couldn't reasonably have prevented it. Then move on and do your best to treat it! If you did make a mistake, then acknowledge what it was so that you do better next time - but don't give up!

Its getting more possible to take the random number generator out though through the #wearenotwaiting movement. I'm currently using a closed loop insulin system as I know others are on the forum, still not perfect but definitely getting there (the not perfect bit is me - not the hardware)
 
  • Like
Reactions: porl69 and tim2000s

db89

Well-Known Member
Messages
1,134
Type of diabetes
Type 1
Treatment type
Insulin
Yep, 5-8 is what I agreed with my consultant as 4-7 was causing issues with driving. It's a personal target and I'm reasonably happy to drop into the 4s when I don't need to drive.
 

phdiabetic

Well-Known Member
Messages
880
Type of diabetes
Type 1
Treatment type
Insulin
Its getting more possible to take the random number generator out though through the #wearenotwaiting movement. I'm currently using a closed loop insulin system as I know others are on the forum, still not perfect but definitely getting there (the not perfect bit is me - not the hardware)

I know people like these closed loop systems but I just can't trust it! In my experience, CGMs are not accurate enough for me to be comfortable with allowing a machine to adjust insulin off the CGM value without my input. I make my treatment decisions using more than just the number - sometimes meter values, how my body feels, my plans for the rest of the day - and often the best treatment decision is not to give or reduce insulin (I often use spontaneous, short exercise sessions as high treatments, and under bolus for upcoming food as a dropping/borderline low treatment). I like to be completely in control of my treatment, so while it may be an improvement for others, I am not comfortable with these new systems and would like to make all decisions myself.

What is your opinion on CGM accuracy and which one do you use?
 

Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
Treatment type
Pump
I know people like these closed loop systems but I just can't trust it! In my experience, CGMs are not accurate enough for me to be comfortable with allowing a machine to adjust insulin off the CGM value without my input. I make my treatment decisions using more than just the number - sometimes meter values, how my body feels, my plans for the rest of the day - and often the best treatment decision is not to give or reduce insulin (I often use spontaneous, short exercise sessions as high treatments, and under bolus for upcoming food as a dropping/borderline low treatment). I like to be completely in control of my treatment, so while it may be an improvement for others, I am not comfortable with these new systems and would like to make all decisions myself.

What is your opinion on CGM accuracy and which one do you use?

I use Dexcom G5 and find the accuracy to be excellent especially in the first two weeks. I'm currently using out of date sensors which seem to have a reduced lifespan (15 days instead of 20+) but they are still good especially with the recommended calibration intervals. I do test between to check accuracy too.

The closed loop system doesn't just work from the number either - I give it a lot more info and over ride it if I feel necessary but it hasn't happened yet :)
 
  • Like
Reactions: tim2000s

Fairygodmother

Well-Known Member
Messages
4,045
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bigotry, reliance on unsupported 'facts', unkindness, unfairness.
Being outside a range you have been told to be inside is not a compromise. It's a failure.

I'm told to be between 5 and 7. I am often outside that range. That is not a compromise. That is a failure. You can make all the excuses you like, the damage will still happen.

I reckon the part of you that’s most likely to be damaged is your mental health. And it’ll be damaged by trying too hard to stay within those guidelines! They’re an ideal, but they’re not the reality of many of us who’ve lived with the T1 thing for longer than you’ve been alive, and are still powering on. Admittedly, it’s really not good to be swooping a lot from high to low, or to have prolonged highs. Are you still in the ‘honeymoon’? (It seems an over-romantic term imho). If you are then it could be making it even more difficult to stay within those guidelines.

As time goes on and you become more familiar with your own reactions to being higher or lower you’ll probably find it easier to recognise what your blood sugars are and be able to take action. You’ll no doubt find that the amounts of insulin you need to cover basal and to bolus for carbs settles too. I admit there are hiccups, I’ve had one recently, and they require more attention to get them sorted. I had to have 10 days away from close tracking as it was beginning to be counter-productive, the causes weren’t being addressed (I could be very rude about the lack of medical expertise) and the stress was infecting the whole of life.

I think it can be much more stressful now for a newly diagnosed T1 than it was in 1969 when I was diagnosed: unlike then we now have the means to follow our bs minutely, we’re told what we should be achieving, we’re given blow by blow accounts of what to expect if we fail to get the right numbers, we’re given a set of calculations to do before we inject and the time we should leave between injecting and eating, and on top of that the times it’ll take for different kinds of food to encounter various parts of our endocrine system. We’re expected to take this all on board and do it all perfectly. I’m really not surprised that the end result can be a maelstrom of stress. When I was diagnosed I was given a two-page leaflet of the carb values of about 20 foods, told how much carb to eat at each meal, a couple of glass and steel syringes, three steel needles and a wee testing kit. That was it. No follow ups. No consultant appointments.

Is the stress also there because in this age of targets, accountability and rewards for achievement , and punishment for failure, that we’re now hard wired to see ourselves as failures when we don’t achieve perfection? How many of us do achieve it? We’re humans, with all the variability and complexity that a spreadsheet cannot encompass.

Add to that the way that bad bs makes us feel rotten, and if you’re frightened, or a perfectionist, you have a recipe for disaster.

NoKindOfSusie, you are NOT a failure!!!! You’re doing an amazing job of trying to get it all right, and doing it against the odds. But, a big but, in another post you said you were diagnosed only last September and it’s still very early days. Being able to run T1 with less effort takes time. I think trying to keep your blood sugars within 5-7 at this stage may also create too many roller-coaster events when corrections lead from high to low to high again. I know you feel you can’t relax but I hope it’s encouraging to know that some of we less than perfect ones have lived a long time with this T1 thing. 48 years for me and no complications yet.
 
  • Like
Reactions: Juicyj and Runica

NoKindOfSusie

Well-Known Member
Messages
427
Type of diabetes
Type 1
Treatment type
Insulin
You're so positive. Carry on

I can be positive if you like. Yay it is great fun I am loving every minute of it. But that's just stupid isn't it. Completely unforgivably stupid. I am personally unable to sit here thinking positive thoughts about something that is probably one day going to kill me, and it is going to make my life inbetween times a total misery. I can barely work, I can't really go out at all, I can't do anything without the constant knowledge that everything affects it therefore I should really avoid doing EVERYTHING.

What the hell do you want from me.
 

Rokaab

Well-Known Member
Messages
2,159
Type of diabetes
Type 1
Treatment type
Pump
I am personally unable to sit here thinking positive thoughts about something that is probably one day going to kill me,
The one guaranteed thing with life is that we will die, yes diabetes probably will kill me off slightly earlier than it would otherwise - but to be honest I've already beaten what the doctors told my parents when I was diagnosed (I only found it out last year when my mum had drunk a little too much lol), they didn't reckon I'd make it to 35 and I'm still going strong with minimal issues (some retinopathy in my lazy eye but it's stable and doesn't need anything doing to it) - and believe me my control has never been perfect.
At this point (and for quite a long time in the future) I'm far more likely to be killed by an accident on the M4 whilst driving to or from work.
 
  • Like
Reactions: DJC3 and tim2000s

Fairygodmother

Well-Known Member
Messages
4,045
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bigotry, reliance on unsupported 'facts', unkindness, unfairness.
I can be positive if you like. Yay it is great fun I am loving every minute of it. But that's just stupid isn't it. Completely unforgivably stupid. I am personally unable to sit here thinking positive thoughts about something that is probably one day going to kill me, and it is going to make my life inbetween times a total misery. I can barely work, I can't really go out at all, I can't do anything without the constant knowledge that everything affects it therefore I should really avoid doing EVERYTHING.

What the hell do you want from me.

You don’t know what’s going to kill you. It might be T1, but it could be Ebola, typhoid, a double decker bus, necrotising fasciitis, falling over the cat, or even old age. Where did the fear come from? Was it all the scare stories that the media love or was it from what you were told by google?
 

kev-w

Well-Known Member
Messages
1,901
Type of diabetes
Type 1
Treatment type
Insulin
I'm told to be between 5 and 7.
Ma'am I'm not a dr but am sure a non d will fluctuate outside those values, they're an ideal target, a good aiming point but impossible to maintain ad infinitum.

Perhaps I'm more laid back having had it 33 years and back then we didn't have the tools for close control, I've got some background retinopathy so far.

To move forward I'd suggest a more pragmatic outlook on 'compromise'.

The more you test the more you learn.
 

phdiabetic

Well-Known Member
Messages
880
Type of diabetes
Type 1
Treatment type
Insulin
I use Dexcom G5 and find the accuracy to be excellent especially in the first two weeks. I'm currently using out of date sensors which seem to have a reduced lifespan (15 days instead of 20+) but they are still good especially with the recommended calibration intervals. I do test between to check accuracy too.

The closed loop system doesn't just work from the number either - I give it a lot more info and over ride it if I feel necessary but it hasn't happened yet :)

How do you get the dexcom sensors to last? I use dexcom too, but on the few occasions I tried to make them last I found they were far too inaccurate even on the 9th and 10th days - I've always given up on them by day 10. I do many finger pricks every day and calibrate when it's off, so I don't think that's my problem. I'm amazed you somehow used expired sensors for 2 weeks!!
 

phdiabetic

Well-Known Member
Messages
880
Type of diabetes
Type 1
Treatment type
Insulin
Ma'am I'm not a dr but am sure a non d will fluctuate outside those values, they're an ideal target, a good aiming point but impossible to maintain ad infinitum.

Perhaps I'm more laid back having had it 33 years and back then we didn't have the tools for close control, I've got some background retinopathy so far.

To move forward I'd suggest a more pragmatic outlook on 'compromise'.

The more you test the more you learn.

It's great to see some people like you who have been diabetic for a very long time! It's encouraging when you see people who didn't have today's tools and knowledge are still alive and kicking - you give us hope for the future.
 

Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
Treatment type
Pump
[QUOTE=". I can barely work, I can't really go out at all, I can't do anything without the constant knowledge that everything affects it therefore I should really avoid doing EVERYTHING.QUOTE]


No you do everything and let diabetes do as it wants, countering it when you can. You get better at the fight, please trust me.

Diabetes can control you or you can control it. Also no other condition asks more of a patient, (@tim2000s I believe that was a quote in your signature, it stuck with me) and while this is true we help each other. What is it you're finding most difficult? let us help.