Hi Everyone, Type 1 for just over a year and struggling!

[JDEAN34]

Hi Everyone,

I was diagnosed with type 1 November 2015, got told i was "honeymooning" as i managed to control my b/sugars through diet, until just before Christmas 2015, phoned to alert them my b/sugars were increasing and they told me i would need to go onto insulin injections right away.

I managed to keep my b/sugars well controlled up until October/November last year. I'm a keen motorcycle racer and do many other very active sports when i'm not racing, thus meaning i didn't have to take much insulin to keep my b/sugars under control, the race season stops between October and April, and i have struggled to keep my b/sugars under control since the racing stopped for winter, now they wont let me renew my race licence due to having "bad control" of my diabetes, i've asked for help from my GP and diabetician (if that's how you spell it) and the answer i keep getting over and over again is "take more units" i feel that this is not the answer, as one of my colleagues has had type 1 for 11 years and advised me that he and people he knows have had a similar issue and eventually had to be taken off of the lantus, which is what i currently use alongside novorapid.

Can anyone shed any light on this as i urgently need to be accepted for my racing licence, and i only have just under a month till the racing starts again.

Thanks in advance for your help,
John

 

[catapillar]

What insulin regime are you using? Are you carb counting?

What does the bad control mean? Are you struggling with hypos, hypers or both? What does good control mean for the purposes of the licence?

 

[azure]

Welcome @JDEAN34 Sorry to hear about your licence problem.

Do you carb count and adjust your bolus insulin according to,what you eat? That's crucial for good control.

Can you give us an idea of a day's blood sugars? Are they too high? Too low? Going from high to low?

 

[steve_p6]

John

There are others better placed than I to give advice on early-life control and changes but for the purposes of improving and demonstrating levels of control have you considered CGM or freestyle Libre. CGM enables T1s to fly commercial jets it should help for bike racing too.

 

[novorapidboi26]

If the license is important to you you should take whatever insulin is needed to bring your sugar under control.....a background insulin like Lantus will always be needed......only a very small minority have reported to not require this dose but it doesnt lastr forever...

you don't need to be fearful of taking more than you do now or more than anyone else....we are all different and need different amounts of insulin...

what additional things do you need to meet to get this license....?......do you need show all your BG readings....?

as others have said above, you need to get testing and adjust your Lantus and then your novorapid......

will you be able to do this inside a month, maybe, but maybe not.....

 

[JDEAN34]

Hi folks,

Hi @catapillar I take 50 units of lantus every morning, and i usually take lantus 3-4 times a day depending on meals, i dont carb count, this is something i have never been told how to do, when i say bad control, my b/sugars are averaging 16mmol. which is extrememly high. i have tried to get appointments at my local diabetic clinic numerous times and have stressed my problems every time to be told "theres a 9 month waiting list, nothing we can do" which is very frustrating. for my licence my doctor needs to sign a letter saying they are happy with how i control my diabetes, which obviously they arnt due to my high average b/sugar readings.

Hi @azure I dont carb count due to never being shown this. yesterday i kept it under 10mmol all day, first time in a longtime! i did have to keep topping up with my novorapid to obtain this though. normally it stays between 10mmol and 14mmol. recenlty is seems i just keep taking novorapi and nothing happens. i have seen myself take upto 100 units of novorapid in a day and my meal's would have been for example - sandwiches using granary bread, no butter, just ham and cheese, usually eat a few bags of crisps then something along the lines of gammon or chicken for tea alongside chips.

Hi @steve_p6 i have the libre unit at the moment, but cant afford the sensors, £50 a go and required every 2 weeks. ive not heard of the GCM though, ill look into it, Thank you.

 

[JDEAN34]

Hi @novorapidboi26 I understand i need to adjust my insulin etc, but after receiving very little help from my local clinics in gaining advice on what steps to take etc, i'm at a dead end. after being told i need to wait 9 months to see the diabeteic clinic after stressing that im struggling to control my blood sugar, and being told from my gp to just take more when im going to try and get help, and literally all i get in return from all the questions i raise is "just take more"

Its very frustrating as i feel they aren't helping me at all.

 

[azure]

@JDEAN34 Can you phone a DSN and get some advice?

It makes me really angry when carb counting isn't explained to Type 1s. It's like driving with a blindfold on.

The first thing you should think about is your basal insulin - that should keep your BS steady all day and night. You can check if it does that by doing a basal test:

https://mysugr.com/basal-rate-testing/

It's a U.S. site so uses US measures for BS but you can convert them here:
http://www.diabetes.co.uk/blood-sugar-converter.html


Then you can look at your meal time (bolus) insulin. There's an online carb counting course here:

https://www.bertieonline.org.uk

I also highly recommend the book Think Like A Pancreas.

 

[JDEAN34]

@azure it makes me angry when i get nowhere with the local clinics, and where i stay its a 50mile drive to the next clinic. They mentioned carb counting at the very beginning bur said they would discuss at my next appointment, which ive still not had! I have left messages for the DSN to call me, but still not had a callback, im at the point where im gonna have to go to my local clinic, and sit there till im seen. At the end of the day it isnt just about my licence, its my longterm health too. I'll get that book and do the course, Thank you

 

[novorapidboi26]

Hi @novorapidboi26 I understand i need to adjust my insulin etc, but after receiving very little help from my local clinics in gaining advice on what steps to take etc, i'm at a dead end. after being told i need to wait 9 months to see the diabeteic clinic after stressing that im struggling to control my blood sugar, and being told from my gp to just take more when im going to try and get help, and literally all i get in return from all the questions i raise is "just take more"

Its very frustrating as i feel they aren't helping me at all.

Its unfortunate thats for sure, especially due to the timescales you are working with...

Who is responsible for issuing the license? Is it a special racing license....? What do they need from you to be successful...?

 

[JDEAN34]

Its unfortunate thats for sure, especially due to the timescales you are working with...

Who is responsible for issuing the license? Is it a special racing license....? What do they need from you to be successful...?

Its and organisation called the SACU (scottish autocycle union) i had the highest level licence possible due to my 11 years experience in racing, and all i need is a statement/letter from my GP or DSN saying they are happy with how my diabetes is controlled, but until they help me when i ask for appointments etc, i think i wont be going anywhere fast.

 

[azure]

@azure it makes me angry when i get nowhere with the local clinics, and where i stay its a 50mile drive to the next clinic. They mentioned carb counting at the very beginning bur said they would discuss at my next appointment, which ive still not had! I have left messages for the DSN to call me, but still not had a callback, im at the point where im gonna have to go to my local clinic, and sit there till im seen. At the end of the day it isnt just about my licence, its my longterm health too. I'll get that book and do the course, Thank you

Take it slowly and steadily. You can definitely improve your control, but it will take a little while to get things right.

Keep detailed records of your BS and foods. I had basic carb counting training when I was diagnosed, but then worked the rest out for myself. It's not hard and the difference it makes is amazing.

Once you get the tools you need, not only will your control improve, but the whole thing will make a lot more sense and you'll be able to get on with your life and get your licence back too.

 

[JDEAN34]

Take it slowly and steadily. You can definitely improve your control, but it will take a little while to get things right.

Keep detailed records of your BS and foods. I had basic carb counting training when I was diagnosed, but then worked the rest out for myself. It's not hard and the difference it makes is amazing.

Once you get the tools you need, not only will yoyr control improve, but the whole thing will make a lot more sense and you'll be able to get on with your life and get your licence back too.

I suppose its all about learning as you go. i'm sure i'll get the hang of it over time, just wish my local clinics would be more helpful.

Thanks for your advice, feel a little less stressed about it now, maybe now i can sleep better at night

 

[Freema]

welcome here JDEAN34

 

[Daibell]

Hi and welcome. As a T1 you do need insulin and you should have enough the right way to control your blood sugar. You also still need to control your diet sensibly to keep the carbs down. This avoids weight gain and sugar swings. Carb-counting is really essential and I don't know why the NHS make such a big deal of it. My DN explained it to me in 10 minutes when she started me on insulin; you can't get easier than that. If you can't get the right advice from your surgery or clinic then I would suggest that most of us were started on 1 unit of rapid (Bolus) insulin to 10gm of carbs at each meal. The actual need will vary from person to person. To avoid hypo risk you can start with a lower amount of bolus and gradually increase it over a week or so using the meter to guide you to the right ratio for you. Sometimes you have to guess the amount of carbs in a meal and my DN said sometimes you just have to eyeball it and experience improves that. You need to be happy that your daily Lantus is balanced first. It's balanced when your BS is stable when you fast for a good few hours. A very rough approach that I use, and told by my DN, is to check that my morning fasting BS is between 5-7 mmol. This is not an accurate measure but puts you in the right area; there are more accurate ways using fasting.

 

[Robkww]

I suppose its all about learning as you go. i'm sure i'll get the hang of it over time, just wish my local clinics would be more helpful.

Thanks for your advice, feel a little less stressed about it now, maybe now i can sleep better at night

Hi @JDEAN34 and welcome. You'll get some guidance from our experienced forum members, however, I just had to say the way you have been left to it to cope on your own is absolutely dreadful.

 

[Soplewis12]

Hiya, what scottish health service do you use?

 

[catapillar]

my licence my doctor needs to sign a letter saying they are happy with how i control my diabetes, which obviously they arnt due to my high average b/sugar readings.

Have you asked your doctor or DSN about this letter? Because you might not have very good diabetic control at the moment but I'm not sure that translates to control not good enough to ride a bike. Usually control issues that translate to issues with driving are to do with hypoglycaemia and too low blood sugar (which would be why your friend has mentioned people reducing insulin) but you have the opposite problem with blood sugar that is too high. I'm not sure a too high hba1c would necessarily result in your doctor not signing off - course that depends on what exactly it is they are being asked to sign. But you never know, doing the asking of your DSN or your GP might get you bumped up the referral list.

Essential your GP and diabetican are right, if your problem with control is high blood sugar, the answer is to take more units. Unfortunately it's not as simple as just crank it up, you have to work out the right units of basal insulin to keep you steady (with a basal test) and the right number of units to take to cover the door you are eating (by learning carb counting) and when to take your bolus.