In desperate need of advice / support

[Taylor Gillies]

Hi guys, I'm 18 and have been T1D since I was 6 years old. I've literally just joined this forum as I am struggling a lot with keeping my sugars controlled well enough to get my HBA1C down. When I turned 13 I lost the rails with my Diabetes and totally gave up, I never done my injections or checked my sugar levels. I developed a very serious liver condition, and was very ill and was never out of hospital. My HBA1C was above 130mml and now it is at 80mml. However I have just been told there are early signs of diabetic problems in my eyes, not a concern as of yet but obviously it could be in the future. Does anybody have any support / ways that really helped them tighten the ropes with your diabetes? I am really struggling and any help is kindly appreciated.
Taylor

 

[Lynn Davies]

I am too new to be any help but well done on taking the first steps towards control xx

 

[Taylor Gillies]

I am too new to be any help but well done on taking the first steps towards control xx

Thank you Lynn. It's been a hard couple of years, with my HBA1C going so high it has started to have an affect now, i.e, my eyes possibly being at risk etc. My aim is to obviously get it down to at least 50mmol however I am really, really struggling and need some support / help on the best and easiest ways to do so.
xx

 

[Lynn Davies]

Hopefully one of the expert type1's will be along soon. I don't know jack doodoo about type 1's. Hell I know jack doodoo about type2!!!

 

[Lynn Davies]

Do you have a diabetic nurse you can contact tomorrow morning. I'm sure some of the damage can be reversed by better control.

 

[Matt Cycle]

Hi Taylor

I think a lot of people have felt like that to one level or another. The good thing is you have recognised the problem and are trying to do something about it. Do you test your bloods much? If not then plenty of testing helps because you can see how what you eat and your insulin doses affect your blood glucose. What insulin are you on?

Exercise is good as well (as it is for every one!!)

 

[trophywench]

Hi Taylor
What you've just said does happen to quite a lot of teenagers but you've actually realised you need to do something about it a lot sooner than, sadly, a lot of them do. So that's one up to you so far! And you've found this forum - so that's two up to you now!

Despite the fact that you've probably been told 'we're all aiming for 48!' which makes your 80 sound really awful - I'm going to convert these to the old numbers. They are smaller number and therefore the gap won't be as big! Yes - it will BE the same thing - but it just won't SOUND as bad! LOL 48 = 6.5 and 80 = 9.5. See? - it's only 3.0 difference so it shouldn't be too difficult !

Are you still under the paediatric hospital team, or have you transferred to adult services now and can you tell us, have you been on an actual carb-counting course - DAFNE, or one of the individual ones that many areas hold? Oh yes, we all may think we know how to count em - but it's what we do after that, that's probably more important. Also you do learn a lot generally on them - I'd been T1 for over 30 years when I did mine - and I seriously wondered how I'd managed to survive after I did the course!

And - what sort of actual meter readings are you seeing through the day - is your BG high every single time you test, or is it higher/lower at certain times of day?

Finally - what sort of things do you eat (be truthful here, we ain't the thought police) and how about exercise - d'you play footie, or cycle, or anything else regular?

 

[Lynn Davies]

Phew! Am I glad to see you guy's. Taylor you are in safe hands now so I can relax.

I was diagnosed less than 2 weeks ago so really very little help.

But I do give great (((hugs))) xx

 

[Redkite]

Taylor, it's never too late for a fresh start 🙂. Are you on MDI (basal bolus?). I highly recommend you get and read this book: "Type 1 Diabetes in Children, Adolescents and Young People" by Ragnar Hanas. It's written in a positive, "can-do" style and is brilliant for type 1's of all ages, even if you think you know all that stuff already!

Tips for getting your Hba1c down:

1. Test your BG and act on the results. (Ideally test before each meal, 2-3 hours after each meal, and occasionally at 3am to see what's going on at night).

2. Keep a record of your BGs and review weekly for patterns (e.g if you're always high mid afternoon, you need to increase lunch insulin).

3. Count your carbs and take insulin for all of them!

4. From time to time, have a blitz on your diabetes by keeping a detailed diary of food eaten, exercise, illness, BGs and insulin (just for a few days) - this can be very helpful for making changes to your bolus ratios and basal.

5. Make sure you go to all clinic appointments. If your clinic team are negative and just give you a telling off, instead of encouraging you and making helpful suggestions, move hospitals - you have the right under Patient Choice to move, just ask your GP to refer you.

 

[Amberzak]

Hi Taylor.

I know exactly what you mean. I've had the same issues in the past.

Trophy has eloquently asked all the right questions.

Just wanted to add, you are in safe hands on this forum. You can be totally honest here. People aren't the judging type at this forum. It's the most supportive place I've seen for diabetes support.

 

[Northerner]

Hi Taylor, welcome to the forum 🙂 Excellent advice given already - I would add that, if you haven't already been on one, ask your DSN about going on a DAFNE course or similar - many people find it really transforms their understanding and attitudes to their diabetes 🙂

 

[Flower]

Hello and welcome Taylor 🙂

Do talk to your diabetes team/DSN or a gp about the best way to start to take control- this is especially important as you say you have the early stages of eye problems - presumably background retinopathy? Reducing your HbA1c too quickly can perversely make retinopathy progress faster so ask for help on the best way to improve your control. As already said start to do tests on waking and before and after meal times and record the results whatever the result is, it really helps to see a record rather than just erasing the high results from your mind.

I went seriously off the rails in my early to mid 20's and it is my biggest regret. I can't believe I didn't use to care but it is a stage we all go through and it's not surprising we get thoroughly hacked off with the monotony of having to do it all. I reached a point where I was so unwell I knew I had to do something different because not bothering wasn't making me happy or healthy. I got some good help from a diabetes consultant - a bit blunt but it did the trick- and I started to see better results and wasn't making excuses to avoid blood tests or attend hospital appointments.I felt really proud at getting better results and my diabetes team were really helpful when they could see I was trying my best with things.

It is a challenge to get back on track but start today doing small things such as testing and recording. It might not be pretty to begin with but don't despair, stick with it and think what you can do to improve the results. Starting to see better results is such a boost and makes you want to keep going. The one thing I have learnt to my cost is not to delay, start to get sorted, contact your diabetes clinic if you go to one or ask to be referred because you being healthy is an absolute priority. Diabetes teams have seen and heard it all before and will want to help you be healthy. Good luck. Let us know how you are getting on 🙂

 

[Stitch147]

Great advice from the type ones. Hope you can get back on track.

 

[shirley]

Hi, so sorry you are having such difficulties. I care for my type 1 son so I know just how challenging it can be and I think that those who are not diabetic have absolutely no idea, and why would they? I was completely ignorant beforehand, I thought that you just had to give insulin and that is such a small part of it all.

What has worked for my son, is that we low carb. For us this means that he needs less insulin and his blood sugars do not fluctuate too wildly. I know other young people of the same age (20) who don't do this and I can see that it is simply not sustainable for lots of diabetics and that everyone wants to have the freedom to eat what they want, when they want. I just wonder if it might be a way forward to re start things for you. Not very low carb but just cutting them down and once things are stablised, re introducing all of the things that you love, but carefully and with lots of testing to see what insulin is needed.
Otherwise I would just say, don't be too hard on yourself. It is easy for me, I manage for someone else and make the decisions, I wouldn't have such control if it was me. Take it slowly, like dieting, once you start to see results, you will feel confident and loads better

 

[Taylor Gillies]

Hi Taylor
What you've just said does happen to quite a lot of teenagers but you've actually realised you need to do something about it a lot sooner than, sadly, a lot of them do. So that's one up to you so far! And you've found this forum - so that's two up to you now!

Despite the fact that you've probably been told 'we're all aiming for 48!' which makes your 80 sound really awful - I'm going to convert these to the old numbers. They are smaller number and therefore the gap won't be as big! Yes - it will BE the same thing - but it just won't SOUND as bad! LOL 48 = 6.5 and 80 = 9.5. See? - it's only 3.0 difference so it shouldn't be too difficult !

Are you still under the paediatric hospital team, or have you transferred to adult services now and can you tell us, have you been on an actual carb-counting course - DAFNE, or one of the individual ones that many areas hold? Oh yes, we all may think we know how to count em - but it's what we do after that, that's probably more important. Also you do learn a lot generally on them - I'd been T1 for over 30 years when I did mine - and I seriously wondered how I'd managed to survive after I did the course!

And - what sort of actual meter readings are you seeing through the day - is your BG high every single time you test, or is it higher/lower at certain times of day?

Finally - what sort of things do you eat (be truthful here, we ain't the thought police) and how about exercise - d'you play footie, or cycle, or anything else regular?

Hi Shirley , thank you so much.
Yes, a few years ago when it was very off the rails i was warned about everything that can obviously happen. I have since then came down from HBA1C 130+ to 80. I did manage to get to 73, but I have caught a lot of bugs / stress recently which really hasn't helped.

I have actually just moved to the adult services as of 1 month ago. I am waiting to receive details about a carb counting course which I am looking forward too.

Okay so yes I obviously check my sugars through out the day. My best reading is usually the morning one, which is usually between 5-10. I will have my breakfast, usually toast or some cereal and an apple, and then bolus. My lunch reading is usually a little higher, maybe12 ish, however some days it can be at 6. I try my hardest to check my levels mid-afternoon, however not always. Then dinner time, is usually when i may be higher.

I eat everything, sometimes a little too much, lol! I'm of good weight/BMI range etc. However to be honest, I never exercise.

Taylor

 

[Taylor Gillies]

Hello and welcome Taylor 🙂

Do talk to your diabetes team/DSN or a gp about the best way to start to take control- this is especially important as you say you have the early stages of eye problems - presumably background retinopathy? Reducing your HbA1c too quickly can perversely make retinopathy progress faster so ask for help on the best way to improve your control. As already said start to do tests on waking and before and after meal times and record the results whatever the result is, it really helps to see a record rather than just erasing the high results from your mind.

I went seriously off the rails in my early to mid 20's and it is my biggest regret. I can't believe I didn't use to care but it is a stage we all go through and it's not surprising we get thoroughly hacked off with the monotony of having to do it all. I reached a point where I was so unwell I knew I had to do something different because not bothering wasn't making me happy or healthy. I got some good help from a diabetes consultant - a bit blunt but it did the trick- and I started to see better results and wasn't making excuses to avoid blood tests or attend hospital appointments.I felt really proud at getting better results and my diabetes team were really helpful when they could see I was trying my best with things.

It is a challenge to get back on track but start today doing small things such as testing and recording. It might not be pretty to begin with but don't despair, stick with it and think what you can do to improve the results. Starting to see better results is such a boost and makes you want to keep going. The one thing I have learnt to my cost is not to delay, start to get sorted, contact your diabetes clinic if you go to one or ask to be referred because you being healthy is an absolute priority. Diabetes teams have seen and heard it all before and will want to help you be healthy. Good luck. Let us know how you are getting on 🙂

Hi there

Thank you so much for your helpful reply. Yes it is background retinopathy. I have been told there is no cause for concern and that it isn't an issue yet, however what scares me the most is the fact that the background affects are there and if things don't improve then even not now, but later in life, difficulties will arise.
Thank you 🙂

 

[Taylor Gillies]

Taylor, it's never too late for a fresh start 🙂. Are you on MDI (basal bolus?). I highly recommend you get and read this book: "Type 1 Diabetes in Children, Adolescents and Young People" by Ragnar Hanas. It's written in a positive, "can-do" style and is brilliant for type 1's of all ages, even if you think you know all that stuff already!

Tips for getting your Hba1c down:

1. Test your BG and act on the results. (Ideally test before each meal, 2-3 hours after each meal, and occasionally at 3am to see what's going on at night).

2. Keep a record of your BGs and review weekly for patterns (e.g if you're always high mid afternoon, you need to increase lunch insulin).

3. Count your carbs and take insulin for all of them!

4. From time to time, have a blitz on your diabetes by keeping a detailed diary of food eaten, exercise, illness, BGs and insulin (just for a few days) - this can be very helpful for making changes to your bolus ratios and basal.

5. Make sure you go to all clinic appointments. If your clinic team are negative and just give you a telling off, instead of encouraging you and making helpful suggestions, move hospitals - you have the right under Patient Choice to move, just ask your GP to refer you.

I really hope that it isn't too late, I don't want to cause any more problems to myself. I am still young & I really want to continue to be healthy.
I am currently on Novorapid, and my background I take Levimuir.

 

[Caroline]

There are lots of type 1s here and some suggestions have been made already. The important thing is you have taken steps to get better control and you have come to the right place for help and support.

Although I am type 2, I know I can't ignore it, I have learned there is more to life than diabetes. We all need treats from time to time so don't be too hard on yourself if you sometimes 'slip', everyone does. It's coming up to Christmas, so enjoy the holiday. If you like mince pies or Christmas pud have a small portion after your dinner with everyone else.

 

[stephknits]

Hello and welcome Taylor. I notice in your post that you Bolus after your breakfast, not before. If you could Bolus before that might help. Lots of people here have found injecting their fast acting up to half an hour before they eat helps reduce bs readings as the insulin better matches the carb release. I try to do it about 10 to 15 mins before, depending on circumstances.

 

[trophywench]

Hi Taylor! - my name's Jenny, by the way - Shirley isn't one I want, though I did want to be called Ann when I was little! LOL

Just for the record, my optician told me I had background retinopathy in about 1994, well before retinal photography was available widely - but my D consultant couldn't find any and pronounced, 'Well - Mr J must have better eyesight than me, then!' and we both had a laugh. Lo and behold in 1999, when in Coventry we had a separate eye hospital so all of us Ds went there for our eye exams and they used the slit lamp thingies - they agreed with Mr J. There it was, in my left eye, just as he'd told me. Here we are in 2015, and for a number of years (since the noughties) it's been there in both eyes - but it's still 'background' - and I can assure you my control has never been absolutely brilliant - though never absolutely awful either. For the last 4 years it's consistently been between 52 and 54 - ie c. 7.0.

So - I reckon there's hope!!

(PS I've only achieved consistently below high 7s, sometimes sneaky low-mid 8s, since I've had my pump.)

Sounds to me, young man, from the BG numbers etc you've posted - quite likely that your Basal insulin could well be 'out'. Have you ever wondered whether there's a way of seeing if it is? It's something you should learn on your carb-counting course, but so you can get there a bit sooner (there's often still quite a wait to get on these once you have your name down for one, they are very popular for very good reasons!) have a read of this http://www.diabetes-support.org.uk/info/?page_id=120 which was written just for you ! (well that's a fib, but it was written for anyone who wants/needs to do it - and seems you probably do.) Once you can identify whether that's right all through the day and night - you can start to tweak stuff. But it's no good fiddling with bolus insulin until you have got the basal as right as you can.

My last question (for now) is - why bolus AFTER eating? When you are little, and probably getting up to all sorts of things, plus you may have occasionally been known to decide suddenly one morning or another - as many children do! - that you didn't like eg. coco-pops any longer and wanted something that your mom didn't have in the cupboard instead - your parents might well have been advised to leave your jab till after you ate, it's not unusual at all to do that with children at all (or on odd occasions as an adult, say we're faced with a buffet, where we don't know exactly what will be on offer or how much of it we'll fancy eating, so don't want to bolus upfront until we know and can guesstimate the carbs we've eaten after) But - if there's a really good reason why you do it - tell me!