Type 1 confirmed a week ago

[Abo2000]

Hi everyone I hope all is well, I was diagnosed just recently. With all the virus business I was told that I couldn’t have any coaching or sessions of some sort about the diabetes. I have read a lot about it in the meantime and I think I get on by fine although I guess it’s hard to tell so early on. Are these sessions really worth it and if so will I be getting them later on?

Side point, I’m a very active person and am keen on finding out exactly what’s going on when I eat and exercise etc..

I’ve been told to prick multiple times a day and I do so 10-12 times to get a picture of what is happening, although for some reason it’s already starting to have a lasting effect on my fingers (god knows why so soon), and it’s difficult to actually understand the graph. Does anyone recommend CGMs even if self funding?

Thank you all

 

[Marie 2]

Get a Libre or even better a Dexcom. Instead of snapshots of time you get the whole movie. Instead of having to wait to know if you are going up or down by keep doing finger pricks, you can just look at a graph 24/7. You still have to double check off and onto verify the accuracy etc but it will save you a lot of fingersticking.

I'm assuming you are on insulin? But it is helpful if you put type 1 under your name and what you are taking in your profile.

Always, Always, when you take insulin keep a fast acting carb with you like jelly belly's, We all misjudge or run into circumstances where we can drop unexpectedly.

You are also probably in the honeymoon period, although the younger you are the less time it seems you spend in it. But not always. What that means is you are probably still making some insulin, until you're not.So it be a little erratic for a little time.

It will become old hat, learn to carb count asap so you can learn to adjust dosing per the food you eat. It will make it a lot easier to control your blood sugars, Join us on the Type 1 R US thread on this site, lots of us type 1's there!

 

[Juicyj]

Hello @Abo2000 and welcome

Yes try and get some help with coaching, there’s a lot to learn with t1 so the more you know the better equipped you are to manage, knowledge is power. ‘Think like a pancreas’ is an excellent read to help formulate your knowledge and understanding.

I exercise a lot so run and cycle, just completed a 52 mile ride yesterday all pretty much in range for the 4 hours, it’s taken me a long time to get to this point though with much trial and error, my primary goal is to avoid hypos but if I can also stay in range too then that’s a massive plus. Exercise has been a saving grace for me both mentally and physically and I cannot stress enough to any diabetic to just get out there and do it, build up slowly and learn how your body responds, you are unique so your response will be different to mine. I also agree to self funding a sensor, the Dexcom G6 is a CGM whereas the libre is a flash sensor and not so easy to use when exercising, I keep the G6 readings visible on my phone when exercising so can see where I am. I always carry glucotabs too everywhere so next to bed or out on a run they are always within reach and that’s vital.

Lots of friendly folk about here too so ask questions and someone will always be around to respond.

 

[Daibell]

Opinions on the various NHS Diabetes training sessions varies. A lot depends on how much of a Google nerd you are and how good the trainer is! The only NHS/DUK sessions I've ever had were a waste of time and they served tea with sugar and biscuits available. You can learn most of what you need to know on these and other forums over time. The sessions do compress this which is good but the diet advice can be dire so be prepared to pick and choose what you take away.

 

[CelalDari]

Hi everyone I hope all is well, I was diagnosed just recently. With all the virus business I was told that I couldn’t have any coaching or sessions of some sort about the diabetes. I have read a lot about it in the meantime and I think I get on by fine although I guess it’s hard to tell so early on. Are these sessions really worth it and if so will I be getting them later on?

Side point, I’m a very active person and am keen on finding out exactly what’s going on when I eat and exercise etc..

I’ve been told to prick multiple times a day and I do so 10-12 times to get a picture of what is happening, although for some reason it’s already starting to have a lasting effect on my fingers (god knows why so soon), and it’s difficult to actually understand the graph. Does anyone recommend CGMs even if self funding?

Thank you all

Are your blood sugars changing so rapidly? Why do you check 10-12 times a day? I suppose we are all at home and bored so that’s why.

You may want to consider getting a continuous glucose monitor e.g. Dexcom G6 or a flash glucose monitor e.g. Freestyle Libre. The Dexcom G6 automatically relays data to your phone while Freestyle Libre requires you to scan the monitor using a phone or reader. Both produce graphs of your glucose throughout the day. The only downside is the NHS rarely funds these unless your condition is really bad (the criteria set by NICE is online). Dexcom is £159/month while Libre is is around £96-97/month if you want to self fund.

I have also noticed you test a lot. Are you getting a lot of hypos? I was testing 6 times a day plus a few extra times when I felt I had a hypo and my diabetes nurse said I was testing quite a lot and that I could reduce it to 4 times a day. I find that works so much better and my life is not diabetes-centered. I do before breakfast, before lunch, before dinner and before bed.

The good things with CGMs and FGMs is that they will tell you recurring patterns. For example in two weeks I had 16 hypos of which 8 were between 9am and 12 which is when I go out to do shopping or have a walk. So a CGM can help you adjust your insulin dosing based on your activity and also gives so much insight for your diabetes team. You link your data with your diabetes clinic and they can see your BG throughout the 2 weeks, you can enter carb intake so your dietician can see if your insulin ratio and/bolus is working out.

Many people also link their Dexcom G6 to a smart watch so they can get live BG levels in a convenient way. There are also methods on converting a Freestyle Libre which requires scans into a CGM so you can get data sent without scanning using a MiaoMiao transmitter costing around £160 I believe. They all have their pros and cons. Dexcom is more accurate but quite expensive. Libre is cheaper but sometimes inaccurate and requires you to scan the sensor using Bluetooth

 

[Jaylee]

Are your blood sugars changing so rapidly? Why do you check 10-12 times a day? I suppose we are all at home and bored so that’s why.

Or possibly in charge of a motor vehicle..?

 

[CelalDari]

Or possibly in charge of a motor vehicle..?

You only need to check maximum 2 hours before driving and every 2 hours you’re on the road

 

[Brunneria]

You only need to check maximum 2 hours before driving and every 2 hours you’re on the road

Yup, those are the minimum UK rules for testing when driving as an insulin user.
Doesn't mean that people can't test when they want, or feel the need, and 4 or 5 different car trips spread throughout the day (such as to and from work, picking the kids up, taking the kids somewhere, an evening shopping trip) could easily add 4 or 5 tests to a daily routine.

I would urge you not to compare your own testing frequency and testing needs with other people's. We each lead very different lives, with different stresses, activity levels, driving routines, and eating habits. What they do may not suit you, but it may help their own diabetes management tremendously.

 

[Rose22]

Hi everyone I hope all is well, I was diagnosed just recently. With all the virus business I was told that I couldn’t have any coaching or sessions of some sort about the diabetes. I have read a lot about it in the meantime and I think I get on by fine although I guess it’s hard to tell so early on. Are these sessions really worth it and if so will I be getting them later on?

Side point, I’m a very active person and am keen on finding out exactly what’s going on when I eat and exercise etc..

I’ve been told to prick multiple times a day and I do so 10-12 times to get a picture of what is happening, although for some reason it’s already starting to have a lasting effect on my fingers (god knows why so soon), and it’s difficult to actually understand the graph. Does anyone recommend CGMs even if self funding?

Thank you all

Welcome to the club! I was started on insulin 3 months ago, and like you not really had any help or attended any courses. The nurse told me to do the online BERTIE course. You log in and do the sections as you go along. It covers carb counting, living with diabetes etc, what diabetes is, really useful.
It does take a bit of tweaking with insulin I have found to learn the patterns. I found recording my levels has helped lots. My nurse said waking, and before each meal and before bed. I only test other times if I feel low or high or about the drive. You must have sore fingers testing that many times a day! Levels fluctuate a lot, how much activity you’ve done, heat, hormones, stress, sleep, food... I have self funded two libre sensors...as quite costly, approx £100. But you wear one for two weeks and so far (I’m wearing my second one now) I’ve found them brilliant! Fairly accurate and show me what my levels do through the night for example, which otherwise I’d had no idea. For me as well it lessens anxiety lots when I haven it on and am out of busy I feel I can check level and be in control more.
I still write my levels in my log book though as at the moment I like to see the level and the dose I’ve given.
Good luck with it all and this is a great place full of knowledgeable people that have really helped me over the past few months.
You can also send the results to your diabetes nurse and they can see how levels are and whether your doses seem right.

 

[CelalDari]

Yup, those are the minimum UK rules for testing when driving as an insulin user.
Doesn't mean that people can't test when they want, or feel the need, and 4 or 5 different car trips spread throughout the day (such as to and from work, picking the kids up, taking the kids somewhere, an evening shopping trip) could easily add 4 or 5 tests to a daily routine.

I would urge you not to compare your own testing frequency and testing needs with other people's. We each lead very different lives, with different stresses, activity levels, driving routines, and eating habits. What they do may not suit you, but it may help their own diabetes management tremendously.

But remember most people eat 3 meals a day and it is a requirement to check BG before giving any insulin so naturally people will have BG readings and wouldn’t need to retest so much.

It is not good for your mental health. Your diabetes should fit around your life not your life fitting around diabetes.

This is coming from a person who used the FreeStyle Libre for two weeks and was doing on average 96 scans a day. I just ended up obsessed with my BG and would give too much insulin and then over correct hypos with too many carbs because I was so obsessed with a number.

We don’t need to be so militant about testing. Before breakfast, before lunch, before dinner, before bed and testing anytime you feel bad should be adequate. Although it’s all got to do with how stable your BG levels are. I perfectly count all carbs and give insulin accordingly so my BG stays around the same between meals

 

[Brunneria]

But remember most people eat 3 meals a day and it is a requirement to check BG before giving any insulin so naturally people will have BG readings and wouldn’t need to retest so much.

It is not good for your mental health. Your diabetes should fit around your life not your life fitting around diabetes.

This is coming from a person who used the FreeStyle Libre for two weeks and was doing on average 96 scans a day. I just ended up obsessed with my BG and would give too much insulin and then over correct hypos with too many carbs because I was so obsessed with a number.

We don’t need to be so militant about testing. Before breakfast, before lunch, before dinner, before bed and testing anytime you feel bad should be adequate. Although it’s all got to do with how stable your BG levels are. I perfectly count all carbs and give insulin accordingly so my BG stays around the same between meals

Again, you are comparing your diabetes management with how others manage their own. What you have decided to judge as ‘militant’ is, for others, both reassuring and the way to excellent blood glucose control. What you found ‘obsessive’ may be, for others, a deliberate and systematic choice to learn how to better their regime.

The longer you spend on the forum the sooner you will realise that everyone here does it slightly differently, and what works for them may not work for you and vice versa.

 

[JMoli]

Hi, I think it’s absolutely fine to test as many times as you feel right - I’m in the honeymoon phase and a few months in and my blood sugar continues to be quite erratic on a daily basis, I can’t carb count as I’m on tiny units of insulin and the pancreas is having days of working and sleeping! A cgm is amazing and can help you identify patterns and take better control to avoid hypos etc. I use a Libre (on the NHS) with a Bubble that sends my readings to my phone every 5 mins. I’m probably a bit obsessive about my readings but I’ve had too many lows/hypos on one unit of insulin that personally I’d rather know what’s going on. I imagine in time and with a carb ratio I’ll relax but it’s certainly helped anxiety. Noting food and activity is great too, either on an app or in a diary, and you may see patterns.

 

[michita]

I agree. We are all different. For me I wanted to test as often as I wanted right after the diagnosis. HCPs telling me not to test so often were giving me more stress for telling me that. I tested every hour after meal. It was militant but it gave me a sense of control I needed then.

Now after 4 years, I test only about 5 times a day ... thinking back testing as often as I wanted was something I needed to feel ok.

 

[Wayward Blood]

Hi Abo, I was testing around about the same number of times as you before I got the Freestyle Libre. It's well worth talking to your diabetes team about getting one when you get the chance – mine is funded by the NHS. My Diabetic Specialist Nurse told me that the cost per sensor to my GP is equivalent to 8 finger tests a day, so I'm actually saving my surgery money by using the Libre. I use it to scan anywhere between 30 and 50 times a day now.

 

[CelalDari]

Again, you are comparing your diabetes management with how others manage their own. What you have decided to judge as ‘militant’ is, for others, both reassuring and the way to excellent blood glucose control. What you found ‘obsessive’ may be, for others, a deliberate and systematic choice to learn how to better their regime.

The longer you spend on the forum the sooner you will realise that everyone here does it slightly differently, and what works for them may not work for you and vice versa.

Just sharing my opinion. We all compare our diabetes management to each other

 

[Circuspony]

I'm 3 years in (diagnosed in my 40s) & some days I can easily test up to 10 times a day. Without that I wouldn't appreciate how high I was going after meals.

My pancreas still has some life in it and I'm very insulin sensitive so on tiny amounts of insulin. I also exercise a lot which can cause my BG levels to plummet. Test as often as you need to for your comfort.

 

[Jaylee]

Hi everyone I hope all is well, I was diagnosed just recently. With all the virus business I was told that I couldn’t have any coaching or sessions of some sort about the diabetes. I have read a lot about it in the meantime and I think I get on by fine although I guess it’s hard to tell so early on. Are these sessions really worth it and if so will I be getting them later on?

Side point, I’m a very active person and am keen on finding out exactly what’s going on when I eat and exercise etc..

I’ve been told to prick multiple times a day and I do so 10-12 times to get a picture of what is happening, although for some reason it’s already starting to have a lasting effect on my fingers (god knows why so soon), and it’s difficult to actually understand the graph. Does anyone recommend CGMs even if self funding?

Thank you all

Hi,

I feel it prudent at this early on in diagnosis to keep a close eye on the BG.
I recommend giving a CGM a punt. I self fund & use the libra with a Miaomiao2 which NFC scans the libre continually sending data ever 5 mins via bluetooth. xDrip or Glimp are reasonably good apps to use on your smartphone. which can also be calibrated to your meter. Making it a GGM set up. You currently can pick the MM2 for a little shy of £137. https://miaomiao.cool/

It it's always wise to carry your meter as a backup when anything seems to look errant on the graph?
Just do your research & find the set up right for you..

You can tailor your diabetes to suit your own lifestyle.With the advent of this new tech, it makes it a little easier to do so.
There will always be a few questions along the way!

Think of you Hba1c a little an average speed check on the motorway.
A BG meter, more like a speed camera.
With a flash monitor or CGM set up.? Like a "dash cam."
Pretty much realtime recording, may spot something you actually missed?

Incidentally "2 hour minimum" can be at a glance, updated on the dashboard as a busy CSR delivery driver or driving to & from a gig. (I keep it handy near the stage monitor too. (Unless we're wrongly booked a death metal pageant, then they might like to see the old meter doing a bit of bloodletting.)
Sometimes the unexpected can happen in a warehouse after lunch, where van keys & delivery note can be thrown at you to go out on a job.

Hey ho. here we go!

 

[Juicyj]

We don’t need to be so militant about testing.

We do need to be very careful about this, managing life with type 1 diabetes and not testing often is like driving a car blind, how do you know what insulin to take, when to correct, when glucose is required. Recording results can explain how long our quick acting Insulin lasts, how we responded to a bolus, did we get the ratio right and so on and so forth. Testing is vital to good control, true it shouldn’t be an obsession but newly diagnosed folk need to correlate between the reading and knowing what to do.

It sounds like you already have your head round what you need to do, but what you do is different to others, each t1 is unique in how they respond to insulin and what ratio is required, the condition is affected by so many different factors and each of us finds our own way by learning more about our own bodies response, we all have unique physiologies, sure there is generic information relevant for all, but here in the forum it’s vital to recognise these differences.

 

[CelalDari]

We do need to be very careful about this, managing life with type 1 diabetes and not testing often is like driving a car blind, how do you know what insulin to take, when to correct, when glucose is required. Recording results can explain how long our quick acting Insulin lasts, how we responded to a bolus, did we get the ratio right and so on and so forth. Testing is vital to good control, true it shouldn’t be an obsession but newly diagnosed folk need to correlate between the reading and knowing what to do.

It sounds like you already have your head round what you need to do, but what you do is different to others, each t1 is unique in how they respond to insulin and what ratio is required, the condition is affected by so many different factors and each of us finds our own way by learning more about our own bodies response, we all have unique physiologies, sure there is generic information relevant for all, but here in the forum it’s vital to recognise these differences.

Yes of course everyone manages their diabetes differently.

I’m just thinking about the person and the impact their current habits may have on their life. Many of us have work and school commitments which will likely resume within months and without a CGM it is unlikely someone will check their BG so many times a day. This may not be the case for the person who started this thread but it’s something they should think about.

With T1 diabetes your care plan is always about how your illness fits around your life. Whether that’s going to the gym, studying at university or going to work. For that I believe the person should replicate their normal life as much as they can while we are in this coronavirus situation. That is why I said 10-12 times was quite a lot, for now it is fine but when normal life resumes it will be difficult to test your BG every 2 or so hours. Realistically if you haven’t eaten anything, haven’t taken an rapid-acting insulin, haven’t done exercise and don’t have any stress/illness then nothing too dramatic should happen to your BG.

Of course you cannot give yourself insulin if you haven’t checked. When I was checking 6 times a day my diabetic nurse said I was checking it too often so I don’t know. We all have individual requirements and I recognise that.

 

[Jaylee]

Yes of course everyone manages their diabetes differently.

I’m just thinking about the person and the impact their current habits may have on their life. Many of us have work and school commitments which will likely resume within months and without a CGM it is unlikely someone will check their BG so many times a day. This may not be the case for the person who started this thread but it’s something they should think about.

With T1 diabetes your care plan is always about how your illness fits around your life. Whether that’s going to the gym, studying at university or going to work. For that I believe the person should replicate their normal life as much as they can while we are in this coronavirus situation. That is why I said 10-12 times was quite a lot, for now it is fine but when normal life resumes it will be difficult to test your BG every 2 or so hours. Realistically if you haven’t eaten anything, haven’t taken an rapid-acting insulin, haven’t done exercise and don’t have any stress/illness then nothing too dramatic should happen to your BG.

Of course you cannot give yourself insulin if you haven’t checked. When I was checking 6 times a day my diabetic nurse said I was checking it too often so I don’t know. We all have individual requirements and I recognise that.

Hello,

I feel you are starting to derail this topic.. But don't mind me, I've only been T1 headbutting 44 years..

With the best will in the world.
I also feel you should analyse a little more closely what your DSN may have told you.?
She sounds like one of mine.

Of course my GP don't seem to mind how many BG strips I get through.
& I have & had a "lifestyle" most Endos would frown upon..
I'm not just "testing testing," doing a line check at a gig..

The topic is about CGMs for a new guy just like you.

Please keep it that way.

Kind regards,

Jay.