Hello

[Deleted member 33898]

Hi evryone. Diagnosed type 1 start of June this year. Quite a shock, only the last week have I started to feel positive about it all until I had my review at the clinic yesterday. Different doctor and dietician this time around and don't feel like they understood me very well. I went away with even more questions. Anyone else felt that way? Decided today I'd get on this forum and connect with others with diabetes. No history of diabetes in my family and no friends have it.

 

[rebrascora]

Hi and welcome

I'm 2.5 yrs down the line with it and I can tell you that it does eventually start to click into place and get easier but those first few months particularly, are really tough, so hang in there.

Sorry to hear your review didn't go so well and you are feeling confused and conflicted. Having consistent clinical support is really helpful at least until you find what works for you and you become the expert in your own diabetes, so it is a shame that you saw different staff and you didn't feel like they were on the same wavelength.

Would you like to tell us which insulins they have started you on and how you are managing with them?
Have they offered or mentioned Freestyle Libre, which is the sensor which goes on your arm to scan your levels so that you don't have to finger prick so much?
Have they started you carb counting yet?.....

...... Sorry lots of questions but feel free to ask plenty back.

Be aware that diabetes varies quite a lot from one person to another even within the various Types, so what works for one person may not work for you but it is useful to get ideas as to what you can try, if you have a problem. What I found most important and unfortunately wasn't really encouraged by clinicians, was to experiment, to see what worked for me. Lots and lots of testing showed me how my body was responding and helped me figure out how best to manage it and I rather shocked my consultant with some of the things that worked for me, but he couldn't deny they worked because he could see the results. With the Libre system you can scan as often as you like to see what your levels are doing (I average about 30 scans a day) and whilst that can cause information overload for some people it is a real enlightening process for most of us and allows us to develop strategies for different scenarios to improve our Glucose levels management.

Anyway, I have waffled on enough for an intro post, but please feel free to ask about anything or just shout up if you are feeling low and struggling to cope or want to rant about the unfairness of it all.... We know how frustrating it can be sometimes and better to vent here than at our nearest and dearest, who perhaps don't fully understand the impact the condition has on us. Look forward to getting to know you better.

 

[SB2015]

Welcome to the forum @jazzchicken

I am glad that you have joined the forum and are now beginning to feel more positive about your Diabetes. It is a lot to learn very quickly with T1, but it definitely gets easier. The best analogy I was given is that it is like learning to drive. At first it seems very complicated but then much of it becomes automatic.

If you are happy to do so let us know what insulin’s you are using.
At the start people are often on quite small doses of insulin and it can be helpful to get 1/2 unit pens. These used to be only available for children but are now more widely available. It can help with making smaller adjustments to doses.

Have you been offered an education course about managing T1. This can be very helpful, to only in the course content on counting carbs and adjusting doses accordingly, but also as an opportunity to meet others who have T1.

Do fire away with any questions that arise. Nothing is considered silly on here. just ask.

 

[Deleted member 33898]

Hi and welcome

I'm 2.5 yrs down the line with it and I can tell you that it does eventually start to click into place and get easier but those first few months particularly, are really tough, so hang in there.

Sorry to hear your review didn't go so well and you are feeling confused and conflicted. Having consistent clinical support is really helpful at least until you find what works for you and you become the expert in your own diabetes, so it is a shame that you saw different staff and you didn't feel like they were on the same wavelength.

Would you like to tell us which insulins they have started you on and how you are managing with them?
Have they offered or mentioned Freestyle Libre, which is the sensor which goes on your arm to scan your levels so that you don't have to finger prick so much?
Have they started you carb counting yet?.....

...... Sorry lots of questions but feel free to ask plenty back.

Be aware that diabetes varies quite a lot from one person to another even within the various Types, so what works for one person may not work for you but it is useful to get ideas as to what you can try, if you have a problem. What I found most important and unfortunately wasn't really encouraged by clinicians, was to experiment, to see what worked for me. Lots and lots of testing showed me how my body was responding and helped me figure out how best to manage it and I rather shocked my consultant with some of the things that worked for me, but he couldn't deny they worked because he could see the results. With the Libre system you can scan as often as you like to see what your levels are doing (I average about 30 scans a day) and whilst that can cause information overload for some people it is a real enlightening process for most of us and allows us to develop strategies for different scenarios to improve our Glucose levels management.

Anyway, I have waffled on enough for an intro post, but please feel free to ask about anything or just shout up if you are feeling low and struggling to cope or want to rant about the unfairness of it all.... We know how frustrating it can be sometimes and better to vent here than at our nearest and dearest, who perhaps don't fully understand the impact the condition has on us. Look forward to getting to know you better.

Hi thank you for the reply , it's good to hear someone say it gets easier. Happy to answer questions

I'm on levermir once a day and nova rapid 3 times a day pre meals. My doses have come down a bit since I started as I was having too many hypos.

I have the libre sensor which I do find useful to a certain degree. It's great to see what's going on between my finger prick tests which im doing 4 times a day still. It was strange that at my last review they concentrated more on the libre readings and pretty much ignored the finger prick tests.

The carb counting I think I'm at a basic level. So for the first 6 weeks I was told to stick to a set amount of carbs for each meal and allowed snacks in between if I wanted. I kept to these amounts as close as possible except for when having a takeaway once a week. I've been trying to increase insulin slowly for certain takeaways to bring post meal levels down. My recent clinic visit they had briefly mentioned about what they think my insulin to carb ratio for each meal is but think they do so because I mentioned I'm going travelling for a week soon and felt this might help.

You mentioned about how what works for one person may not necessarily work for another. I think this is most difficult part for me. I'm a fairly anxious person and very indecisive. I've been trying to get back to exercising but get very nervous before. There are so many suggestions online for diabetes management and I can't seem to pick what to do. Hope iam making sense.

 

[Deleted member 33898]

Welcome to the forum @jazzchicken

I am glad that you have joined the forum and are now beginning to feel more positive about your Diabetes. It is a lot to learn very quickly with T1, but it definitely gets easier. The best analogy I was given is that it is like learning to drive. At first it seems very complicated but then much of it becomes automatic.

If you are happy to do so let us know what insulin’s you are using.
At the start people are often on quite small doses of insulin and it can be helpful to get 1/2 unit pens. These used to be only available for children but are now more widely available. It can help with making smaller adjustments to doses.

Have you been offered an education course about managing T1. This can be very helpful, to only in the course content on counting carbs and adjusting doses accordingly, but also as an opportunity to meet others who have T1.

Do fire away with any questions that arise. Nothing is considered silly on here. just ask.

Hi thank you for the reply. I have been using Levermir and novarapid.the doctor had mentioned about cartridges rather than the pens iam using but not much else was said other than they'll allow for half unit adjustments .

I actually had asked them about a course but told me I wouldn't be eligible for some time. They basically just said I have to get to grips with basics and general life with diabetes in the first year. On diagnosis I was told how my life won't change much but now it feels like that is just something they say when you're in shock at the time. I hope iam wrong.

 

[Bruce Stephens]

It was strange that at my last review they concentrated more on the libre readings and pretty much ignored the finger prick tests.

That doesn't feel strange to me. The finger prick tests are useful to make sure the Libre's not too far out, but so long as the Libre is OK the graphs are vastly more useful, both for us day to day and for review afterwards.

I actually had asked them about a course but told me I wouldn't be eligible for some time.

I think NICE recommends one some time after 6 months but whenever seems appropriate for the patient after that. I think the idea is that it's all a bit much to begin with, and after a few months you'll get much more out of it (and have better questions and so on).

There are online things giving roughly the same content, BERTIE Online, My Type 1 Diabetes.

 

[SB2015]

Hi @jazzchicken

It sounds like you are already getting your head round things, and it really does get a lot easier. In the early days they often start you on fixed doses, in order to work out ratios. Asking you to stick to a fixed amount of carbs also starts to get you familiar with the carb contents of the foods you eat, before you then starting to adjust doses for different amounts of carbs.

With your takeaway these will often make people’s levels misbehave as we don’t always know what is in them, and the fat content may be higher, which can slow the release of the carbs, …. Having said that it is good that you are experimenting with these.

When you are away on holiday there will be a variety of things that are different and all each of us does is the best that we can. This is when the Libre will come into its own as it will help you spot any highs or lows, and head these off. It would be worth talking to your clinic about making correction doses so that you can sort any unexpected highs, if they have not already done so. The half unit pen might also be worth pursuing before you go away.

As I said at the start you are already doing well. When they say it gets easier they mean it. It does.
You will be able to get back to what you did before and it is understandable that you are nervous around exercise. Perhaps do this with a friend to start with and just have your hypo treatment with you, along with whatever you use to read your Libre. Try to be patient with yourself.

It is a lot to take on board and you are already getting things sorted.
Keeo questions coming and just tap into the experience on here for practical tips.

 

[Deleted member 33898]

Hi @jazzchicken

It sounds like you are already getting your head round things, and it really does get a lot easier. In the early days they often start you on fixed doses, in order to work out ratios. Asking you to stick to a fixed amount of carbs also starts to get you familiar with the carb contents of the foods you eat, before you then starting to adjust doses for different amounts of carbs.

With your takeaway these will often make people’s levels misbehave as we don’t always know what is in them, and the fat content may be higher, which can slow the release of the carbs, …. Having said that it is good that you are experimenting with these.

When you are away on holiday there will be a variety of things that are different and all each of us does is the best that we can. This is when the Libre will come into its own as it will help you spot any highs or lows, and head these off. It would be worth talking to your clinic about making correction doses so that you can sort any unexpected highs, if they have not already done so. The half unit pen might also be worth pursuing before you go away.

As I said at the start you are already doing well. When they say it gets easier they mean it. It does.
You will be able to get back to what you did before and it is understandable that you are nervous around exercise. Perhaps do this with a friend to start with and just have your hypo treatment with you, along with whatever you use to read your Libre. Try to be patient with yourself.

It is a lot to take on board and you are already getting things sorted.
Keeo questions coming and just tap into the experience on here for practical tips.

Ive been weighing most of my food and checking labels. Though I can see that being a bit of an issue while travelling. They said I'd be better to let my levels run slightly high anyway because I know im going to be walking about alot at times.

The only thing mentioned about correction doses was to correct pre meal levels but so far I've managed to keep them in target. At the minute my carb intake is 70g 70g 90g and taking 4 5 4 nova rapid doses. This has worked except after lunch I tend to stay up above 10 mmol for about 3 hours but the doctor didn't seem phased by that, even though I've read online about coming down below 9mmol after 2 hours. I would definitely like to eat more as I'm not a big guy and lost alot of weight before my diagnosis but again very little input from dietician or doctor on that.

I'll definitely start taking a look around the forum for certain aspects I'm having trouble with, mainly the exercise.

 

[Deleted member 33898]

That doesn't feel strange to me. The finger prick tests are useful to make sure the Libre's not too far out, but so long as the Libre is OK the graphs are vastly more useful, both for us day to day and for review afterwards.

I think NICE recommends one some time after 6 months but whenever seems appropriate for the patient after that. I think the idea is that it's all a bit much to begin with, and after a few months you'll get much more out of it (and have better questions and so on).

There are online things giving roughly the same content, BERTIE Online, My Type 1 Diabetes.

Did you go on a course yourself ? I have looked at the e-learning on this website and thought it was okay. But nothing beats being able to ask someone questions

 

[helli]

@jazzchicken I notice your doses are whole numbers. Do you have a half unit pen? This made a huge difference to me in avoiding swings in blood sugars where I only had the choice to be too high or too low.
These may only be available in reusable pens but that's not a bad thing as they are more robust, take up less space and are better for the environment.

If you don't have them, half unit reusable pens are something I would recommend asking your diabetes team (nurse or consultant) about

 

[Deleted member 33898]

@jazzchicken I notice your doses are whole numbers. Do you have a half unit pen? This made a huge difference to me in avoiding swings in blood sugars where I only had the choice to be too high or too low.
These may only be available in reusable pens but that's not a bad thing as they are more robust, take up less space and are better for the environment.

If you don't have them, half unit reusable pens are something I would recommend asking your diabetes team (nurse or consultant) about

They mentioned this at my clinic and said I'd benefit from this but for some reason they didn't want to offer it just yet

 

[Bruce Stephens]

Did you go on a course yourself ?

Yes, a couple of years ago now, and (as someone who was diagnosed last millennium) I found it very worthwhile. The group was only people who'd had diabetes for some time (so we'd missed out on such structured education) so they were able to skip through some sections.

But I'm not you. I think almost everyone who's been on a course has reported they found it worthwhile. (I remember one or two people saying some was a bit boring, probably because (unlike mine) they'd been to a course with some newly diagnosed people.)

 

[SB2015]

They mentioned this at my clinic and said I'd benefit from this but for some reason they didn't want to offer it just yet

I would press them for the half unit pens. It makes such a difference in the early stages when you are likely to need less insulin.

Make sure you enjoy your holiday, and as they suggest if it means running a bit higher than usual it is only for a few days, and you can then get back in track once home.