Hi all, new type 1 checking in!

[SueJB]

It's not just me diagnosed at this age then! Everyone keeps telling me how unusual it is at my age, two different doctors said I was an enigma! Not what you want to hear when you are feeling pretty poorly!

Feeling pretty frustrated at the moment, its such a learning curve and I don't like not being an expert at it - I'm used to being the medicines know it all but this is not like most things where you just take a tablet every day. I feel rubbish at a BM of about 8, and discovered last night hot baths (one of my favourite things in the world) make BMs go all screwy! I think I'm maybe trying to go too fast. Argh!

Hi, to be diagnosed at any age is shocking, positively shocking. I was dumb struck...... aged 64!!! It's a lot to get your head round but you will, I did. Well I'm doing it and I agree, it'd be good if you could pop a pill but unfortunately, we can't. 5 injections is a lot. That's where I started in Aug but by drastically cutting carbs, I now do mainly 2 and max 3 if I've done a bit too much eating. I feel more in control and I'm sure you will

 

[Scott-C]

@wildtoast , my top tip would be to accept that T1 has an inherent unpredictability about it, so it's a case of accepting that doing the same thing two days in a row can result in different outcomes for no apparent reason.

While it's attractive to think that 1 unit of insulin will always deal with 10 g of carbs or whatever, these things aren't set in stone. If it turns out that the same u I took for the same meal isn't playing out like it did yesterday, it doesn't mean I've got it wrong, it just means that the interplay between the insulin, food and a million and one bodily processes which they are subject to are playing out differently than yesterday, so the treatment for that meal will require an after the event adjustment of a little more sugar or insulin to bring it into line.

It's a moving target, so the trick is to be nimble and move with it. One brilliant tool for doing that is cgm, I second all the posters who have recommended it.

It levels the playing field so much being able to see how bg is moving, letting you make subtle adjustments - 5g here, 1 or 2u there - to keep things gently in line instead of taking a sledgehammer to it if it's gone way out of range. Plus it'll wake you up if you're heading for a hypo while sleeping!

And you can kid on you're a stockbroker - I've actually had a couple of shoulder-surfers in bars seeing the graph when I've been standing at the bar asking me how my stocks were doing....

There's a couple of good books on the topic - Sugar Surfing by Stephen Ponder, and Beyond Fingersticks by William Lee Dubois.

As a pharmacist, there's a couple of developments going on which might interest you from a professional, and now personal, point of view.

"Smart" or glucose responsive insulin: inject whatever amount and it switches on and off in response to glucose concentration, so you wouldn't need to bother calculating doses.

Also, HDV, hepatic directed vesicles, it's added to normal insulin to 'taxi" it direct to the liver to tell it to suck up excess glucose. In non-T1s, the vast majority of insulin goes straight from the pancreas to the liver to deliver that instruction, whereas our injected insulin rarely gets anywhere near the liver. HDV is meant to change that.

These are both at very early research stages, so who knows what will become of them, but worth keeping an eye on.

And if it all gets too much, just remember Eva Saxl, an inspirational woman! She and her husband Victor, were Jewish WWII exiles in Shanghai, insulin supplies were cut off after the Japanese invasion. Did she curl up and die? Heck, no, they found some technical papers on how to make insulin, set up a makeshift lab, got supplies of water buffalo pancreata from a friendly butcher and made their own. During a war. Saved her and several hundred others. Whenever I feel narked about my T1 throwing a wobbly, I just remind myself I've got it easy compared to Eva. Google her, there's an interesting short video.

Good luck, it's a head-spin to start with, but you will so manage this!

 

[wildtoast]

Hi, to be diagnosed at any age is shocking, positively shocking. I was dumb struck...... aged 64!!! It's a lot to get your head round but you will, I did. Well I'm doing it and I agree, it'd be good if you could pop a pill but unfortunately, we can't. 5 injections is a lot. That's where I started in Aug but by drastically cutting carbs, I now do mainly 2 and max 3 if I've done a bit too much eating. I feel more in control and I'm sure you will

Thank you, I will get there - just gotta be patient and keep plugging away at it!

 

[wildtoast]

@wildtoast , my top tip would be to accept that T1 has an inherent unpredictability about it, so it's a case of accepting that doing the same thing two days in a row can result in different outcomes for no apparent reason.

While it's attractive to think that 1 unit of insulin will always deal with 10 g of carbs or whatever, these things aren't set in stone. If it turns out that the same u I took for the same meal isn't playing out like it did yesterday, it doesn't mean I've got it wrong, it just means that the interplay between the insulin, food and a million and one bodily processes which they are subject to are playing out differently than yesterday, so the treatment for that meal will require an after the event adjustment of a little more sugar or insulin to bring it into line.

It's a moving target, so the trick is to be nimble and move with it. One brilliant tool for doing that is cgm, I second all the posters who have recommended it.

It levels the playing field so much being able to see how bg is moving, letting you make subtle adjustments - 5g here, 1 or 2u there - to keep things gently in line instead of taking a sledgehammer to it if it's gone way out of range. Plus it'll wake you up if you're heading for a hypo while sleeping!

And you can kid on you're a stockbroker - I've actually had a couple of shoulder-surfers in bars seeing the graph when I've been standing at the bar asking me how my stocks were doing....

There's a couple of good books on the topic - Sugar Surfing by Stephen Ponder, and Beyond Fingersticks by William Lee Dubois.

As a pharmacist, there's a couple of developments going on which might interest you from a professional, and now personal, point of view.

"Smart" or glucose responsive insulin: inject whatever amount and it switches on and off in response to glucose concentration, so you wouldn't need to bother calculating doses.

Also, HDV, hepatic directed vesicles, it's added to normal insulin to 'taxi" it direct to the liver to tell it to suck up excess glucose. In non-T1s, the vast majority of insulin goes straight from the pancreas to the liver to deliver that instruction, whereas our injected insulin rarely gets anywhere near the liver. HDV is meant to change that.

These are both at very early research stages, so who knows what will become of them, but worth keeping an eye on.

And if it all gets too much, just remember Eva Saxl, an inspirational woman! She and her husband Victor, were Jewish WWII exiles in Shanghai, insulin supplies were cut off after the Japanese invasion. Did she curl up and die? Heck, no, they found some technical papers on how to make insulin, set up a makeshift lab, got supplies of water buffalo pancreata from a friendly butcher and made their own. During a war. Saved her and several hundred others. Whenever I feel narked about my T1 throwing a wobbly, I just remind myself I've got it easy compared to Eva. Google her, there's an interesting short video.

Good luck, it's a head-spin to start with, but you will so manage this!

Now that is truly inspirational! Really puts things into perspective. Thanks for your lovely words, I'll definitely be looking into CGM and having a read up on it. I've seen a little about the Libre device but I'm not sure if that's quite the same thing. To Google!

 

[LooperCat]

It's not just me diagnosed at this age then! Everyone keeps telling me how unusual it is at my age, two different doctors said I was an enigma! Not what you want to hear when you are feeling pretty poorly!

Feeling pretty frustrated at the moment, its such a learning curve and I don't like not being an expert at it - I'm used to being the medicines know it all but this is not like most things where you just take a tablet every day. I feel rubbish at a BM of about 8, and discovered last night hot baths (one of my favourite things in the world) make BMs go all screwy! I think I'm maybe trying to go too fast. Argh!

I get told I’m “medically interesting” quite often

The learning curve is steep and wobbly - bodies don’t work in straight lines, major endocrine systems are twitchy things to second guess all the time! You’ll feel better as your sugars come down, and an eight will seem quite high once you get the hang of it. We’ve got some great tech now if you can access it - CGMs, great tracking apps, fora like this - they’ll all make it so much easier for you to spot patterns and what spikes and troughs your sugar - not to mention all the support and advice. The MySugr app is good, a bit silly but quite encouraging when you keep the little animated monster green!

I’ve had to drop the temps of my baths too, it’s little things like that that can really get you down after a while. More than the testing and injections, I found.

I’d also recommend the Sugar Surfing book, I’m currently reading Bernstein’s Diabetes Solution - been quite an eye opener after twenty years of not managing very well! But you will get the hang of it, and become an expert in how to drive your own body. You’ll probably find you know more about your condition than your healthcare team after a while, because you’re the only person who lives in your body. So take what they’ve told you, and adapt it to suit.

Have they talked to you about carb counting?

 

[LooperCat]

Now that is truly inspirational! Really puts things into perspective. Thanks for your lovely words, I'll definitely be looking into CGM and having a read up on it. I've seen a little about the Libre device but I'm not sure if that's quite the same thing. To Google!

A Libre is a flash monitoring device, you have to scan it to get a reading. The sensor stores the data for eight hours, so you need to scan at least that often. You can get a little device that basically converts it to a CGM that sits on top of it and that sends a reading to your phone every five minutes. You can then set alarms etc on the phone to warn you if you’re going to high or low.

I scan my Libre several times an hour, unless I’m really focussed on my work or something. It’s been a real game changer for me - I’m on a three month trial prescription at the moment to see if I can bring my HbA1c down to an acceptable level (been in burnout for years) - and looking at my numbers, I should smash my target. I’ll find out next month if I’ll be able to keep it long term. Fingers crossed!

 

[wildtoast]

I get told I’m “medically interesting” quite often

The learning curve is steep and wobbly - bodies don’t work in straight lines, major endocrine systems are twitchy things to second guess all the time! You’ll feel better as your sugars come down, and an eight will seem quite high once you get the hang of it. We’ve got some great tech now if you can access it - CGMs, great tracking apps, fora like this - they’ll all make it so much easier for you to spot patterns and what spikes and troughs your sugar - not to mention all the support and advice. The MySugr app is good, a bit silly but quite encouraging when you keep the little animated monster green!

I’ve had to drop the temps of my baths too, it’s little things like that that can really get you down after a while. More than the testing and injections, I found.

I’d also recommend the Sugar Surfing book, I’m currently reading Bernstein’s Diabetes Solution - been quite an eye opener after twenty years of not managing very well! But you will get the hang of it, and become an expert in how to drive your own body. You’ll probably find you know more about your condition than your healthcare team after a while, because you’re the only person who lives in your body. So take what they’ve told you, and adapt it to suit.

Have they talked to you about carb counting?

So far I've been working on getting back to eating 3 square meals a day, before my diagnosis I was just so tired I was making really bad food choices which obviously wasn't helping matters. The DSN mentioned carb counting briefly at my introduction to all things T1 in the hospital but that you have to be diagnosed 6 months before you can do DAFNE because of the honeymoon period and all. I've been experimenting with the standard 1 unit Novorapid for 10g carbs which as far as I can tell so far seems to be working okay. Its all the other variables that seem to mess up the numbers! Definitely going to check out these book recommendations.

 

[LooperCat]

The honeymoon period can certainly make things a little harder to calculate for. I’m still mostly using a unit of Novorapid per 10g of carbs, and upping it to 1.5 per 10 at breakfast. But it can be affected by so many things - heat, stress, time of the month (don’t know if this affects you or not!), probably the phase of the flippin’ moon for all I can work out! Exercise too, but I avoid that like the plague

I’ve started eating very low carb, and am finding I don’t need much Novorapid at all. My Libre has helped me just about nearly get my Lantus right, it’s well worth getting one if you can.

Keeping a detailed log of what you eat and how it affects you will be invaluable in these early days. Happy to chat via PM if you’d like x

 

[SueJB]

@wildtoast , my top tip would be to accept that T1 has an inherent unpredictability about it, so it's a case of accepting that doing the same thing two days in a row can result in different outcomes for no apparent reason.

While it's attractive to think that 1 unit of insulin will always deal with 10 g of carbs or whatever, these things aren't set in stone. If it turns out that the same u I took for the same meal isn't playing out like it did yesterday, it doesn't mean I've got it wrong, it just means that the interplay between the insulin, food and a million and one bodily processes which they are subject to are playing out differently than yesterday, so the treatment for that meal will require an after the event adjustment of a little more sugar or insulin to bring it into line.

It's a moving target, so the trick is to be nimble and move with it. One brilliant tool for doing that is cgm, I second all the posters who have recommended it.

It levels the playing field so much being able to see how bg is moving, letting you make subtle adjustments - 5g here, 1 or 2u there - to keep things gently in line instead of taking a sledgehammer to it if it's gone way out of range. Plus it'll wake you up if you're heading for a hypo while sleeping!

And you can kid on you're a stockbroker - I've actually had a couple of shoulder-surfers in bars seeing the graph when I've been standing at the bar asking me how my stocks were doing....

There's a couple of good books on the topic - Sugar Surfing by Stephen Ponder, and Beyond Fingersticks by William Lee Dubois.

As a pharmacist, there's a couple of developments going on which might interest you from a professional, and now personal, point of view.

"Smart" or glucose responsive insulin: inject whatever amount and it switches on and off in response to glucose concentration, so you wouldn't need to bother calculating doses.

Also, HDV, hepatic directed vesicles, it's added to normal insulin to 'taxi" it direct to the liver to tell it to suck up excess glucose. In non-T1s, the vast majority of insulin goes straight from the pancreas to the liver to deliver that instruction, whereas our injected insulin rarely gets anywhere near the liver. HDV is meant to change that.

These are both at very early research stages, so who knows what will become of them, but worth keeping an eye on.

And if it all gets too much, just remember Eva Saxl, an inspirational woman! She and her husband Victor, were Jewish WWII exiles in Shanghai, insulin supplies were cut off after the Japanese invasion. Did she curl up and die? Heck, no, they found some technical papers on how to make insulin, set up a makeshift lab, got supplies of water buffalo pancreata from a friendly butcher and made their own. During a war. Saved her and several hundred others. Whenever I feel narked about my T1 throwing a wobbly, I just remind myself I've got it easy compared to Eva. Google her, there's an interesting short video.

Good luck, it's a head-spin to start with, but you will so manage this!

 

[SueJB]

Thank you so much for this post. Informative, positive and extremely well written. Makes me feel much better

 

[Scott-C]

Thank you so much for this post. Informative, positive and extremely well written. Makes me feel much better

Cheers, Sue.

There are dozens of variables involved in managing T1 well.

Many of them are a complete and utter mystery in the early days, but they become clearer as time goes by.

Don't be afraid to make mistakes - I learned a lot from messing up in my early days.It can be very instructive to look back on a hypo/hyper mess and think about why exactly that happened to get a steer on how to avoid it next time.

One of the big things is underestimating the effect of exercise. I'm not talking going to the gym here: deciding to walk home instead of taking the bus, or an extended walk round the shops on a Saturday afternoon are things which should be figured into calculations.

Doesn't mean you can't do them, just means you should think ahead a bit about what you might be doing in the next 6 hours and keeping an eye on insulin on board: insulin isn't a "fire and forget" treatment. It operates over time, people often forget that simple truth.

 

[Dawn3010]

Hi guys. I'm 24 and have just been diagnosed with type 1 diabetes during a hospital admission. I'm actually a pharmacist so I am coming in from a higher level of knowledge about this condition than most would be but it has still been a huge shock. I knew it was possible to develop type 1 at any time but you never think it's going to happen to you!

I had an absolute classic presentation now I look back at how I've been generally unwell/run down for a couple of months, recent weight loss, the thirst and constant peeing - if anyone told me they were having those symptoms when I was at work diabetes would be the first thing I would suggest to have checked out haha. It's certainly different to get the patient perspective on this one, it will give me a new appreciation for what it's like to depend on medication and have a long term condition.

I'm still waiting on the results of some blood tests I had done before leaving hospital the consultant said will rule out a few things (I must admit I'm aware there are some more unusual subtypes etc but wouldn't know anything about them) but that type 1 seems the most likely so that's what we're working with at the moment. 5 injections a day feels pretty intense right now and my BMs have been a bit all over but I'll get there! Any advice/words of wisdom/do's and don'ts are most welcome!

 

[Dawn3010]

Hi guys. I'm 24 and have just been diagnosed with type 1 diabetes during a hospital admission. I'm actually a pharmacist so I am coming in from a higher level of knowledge about this condition than most would be but it has still been a huge shock. I knew it was possible to develop type 1 at any time but you never think it's going to happen to you!

I had an absolute classic presentation now I look back at how I've been generally unwell/run down for a couple of months, recent weight loss, the thirst and constant peeing - if anyone told me they were having those symptoms when I was at work diabetes would be the first thing I would suggest to have checked out haha. It's certainly different to get the patient perspective on this one, it will give me a new appreciation for what it's like to depend on medication and have a long term condition.

I'm still waiting on the results of some blood tests I had done before leaving hospital the consultant said will rule out a few things (I must admit I'm aware there are some more unusual subtypes etc but wouldn't know anything about them) but that type 1 seems the most likely so that's what we're working with at the moment. 5 injections a day feels pretty intense right now and my BMs have been a bit all over but I'll get there! Any advice/words of wisdom/do's and don'ts are most welcome!

Hi I'm in the same vote, been diagnosed last week as type 1 due to other auto immune history waiting on confirmation and tests for Addison's. Managing ok with insulin but been a bit scared as my big comes down closer to normal. We will both get there lol

 

[wildtoast]

Hi I'm in the same vote, been diagnosed last week as type 1 due to other auto immune history waiting on confirmation and tests for Addison's. Managing ok with insulin but been a bit scared as my big comes down closer to normal. We will both get there lol

It sucks doesn't it! I hope you are doing okay with this and the other things you've got going on. We can do this!

 

[wildtoast]

Had my first hypo this evening! 3.9 so only just counts but boy did I feel it! Went out for tea as it's my boyfriend's birthday and did my best guesstimate for my insulin, which would have been fine only dessert took ages to come. So by the time we got home I tested straight away because I wanted to see what had happened to my BGL (read: how high it had gone, bracing for a good wince) but to my surprise it was 4.8. Not 5 mins later I was all shaky so tested again, 3.9! I think my dosing would have been about right but for the length of time the food was over the insulin worked too quickly. I had an apple juice but didn't follow up with anything 'long acting' because I knew the dessert would kick in soon enough and got back up to 5.2 which I was much happier with. Learnt a lot and I was happy to see I had a strong reaction to the hypo - that will teach me for having dessert I guess!

 

[Fiveball]

Had my first hypo this evening! 3.9 so only just counts but boy did I feel it! Went out for tea as it's my boyfriend's birthday and did my best guesstimate for my insulin, which would have been fine only dessert took ages to come. So by the time we got home I tested straight away because I wanted to see what had happened to my BGL (read: how high it had gone, bracing for a good wince) but to my surprise it was 4.8. Not 5 mins later I was all shaky so tested again, 3.9! I think my dosing would have been about right but for the length of time the food was over the insulin worked too quickly. I had an apple juice but didn't follow up with anything 'long acting' because I knew the dessert would kick in soon enough and got back up to 5.2 which I was much happier with. Learnt a lot and I was happy to see I had a strong reaction to the hypo - that will teach me for having dessert I guess!

Fun stuff haha. I'm still working out how soon I need to take my insulin to not get a bs spike or crater too early. When it's out of your hands like you described you're just along for the ride. . Good to recognize the symptoms like you do

 

[LooperCat]

Fun stuff haha. I'm still working out how soon I need to take my insulin to not get a bs spike or crater too early. When it's out of your hands like you described you're just along for the ride. . Good to recognize the symptoms like you do

I’m still working that one out twenty years down the road...

 

[wildtoast]

The honeymoon period can certainly make things a little harder to calculate for. I’m still mostly using a unit of Novorapid per 10g of carbs, and upping it to 1.5 per 10 at breakfast. But it can be affected by so many things - heat, stress, time of the month (don’t know if this affects you or not!), probably the phase of the flippin’ moon for all I can work out! Exercise too, but I avoid that like the plague

I’ve started eating very low carb, and am finding I don’t need much Novorapid at all. My Libre has helped me just about nearly get my Lantus right, it’s well worth getting one if you can.

Keeping a detailed log of what you eat and how it affects you will be invaluable in these early days. Happy to chat via PM if you’d like x

These Libre devices do sound very interesting, and as fickle as I am I am more intrigued after seeing a thread (was it you mentioning it actually?) about stickers to customise them! My DSN did briefly mention them, when I go to see her next week I think I will ask what the deal is regarding NHS funding and all that in my area.

I am keeping a food diary! I figured all the readings in the world won't help if I don't know what I ate to make that happen. I keep seeing a lot about low carb and it seems like this is something I may have to try. I did it a couple of years ago for a while as I did the ketogenic diet to lose weight but ultimately decided I like my carbs and sweet things too much

 

[yakudueye1]

Hi guys. I'm 24 and have just been diagnosed with type 1 diabetes during a hospital admission. I'm actually a pharmacist so I am coming in from a higher level of knowledge about this condition than most would be but it has still been a huge shock. I knew it was possible to develop type 1 at any time but you never think it's going to happen to you!

I had an absolute classic presentation now I look back at how I've been generally unwell/run down for a couple of months, recent weight loss, the thirst and constant peeing - if anyone told me they were having those symptoms when I was at work diabetes would be the first thing I would suggest to have checked out haha. It's certainly different to get the patient perspective on this one, it will give me a new appreciation for what it's like to depend on medication and have a long term condition.

I'm still waiting on the results of some blood tests I had done before leaving hospital the consultant said will rule out a few things (I must admit I'm aware there are some more unusual subtypes etc but wouldn't know anything about them) but that type 1 seems the most likely so that's what we're working with at the moment. 5 injections a day feels pretty intense right now and my BMs have been a bit all over but I'll get there! Any advice/words of wisdom/do's and don'ts are most welcome!

Welcome and it's easier said than done so there is treatment and that your in charge a breather and don't spend time in denial like I did in the beginning as that might save you all its downfall

 

[sdailylog]

First step is to get organized. Also, get to the carb-counting stage ASAP and get your schedule locked in so you can start determining your correction and carb dose divisors. You can create a diet that works to hold your sugars in range nicely. Moving to a pump and CGM will make your life so much easier. I would recommend the Tandem Diabetes T-slim X2 with the integrated CGM. Once you are on a pump with a cgm you will find managing your sugars so much easier (not to mention peace of mind).