Hi, Flashgordon here!

[Flashgordon12345]

Hi,
Been T1 for now 5 years, they said I was a 1 in a million case, never over weight, did sports, parents dont have diabetes, I believe it was a virus.

I have a hard time trying to eat food which doesnt effect my blood after 4pm-sleep.
I've cut all sugar out, chocolate, coke etc. Sleep and breakfast I have it aced.
But after 5pm - Sleep I find it hard to find food to eat that fills me, so I end up eating nuts, fruit, a pastry, sandwich etc which takes it to 15mmol. Which I've been told is bad. Then I read stuff like this on this site "The healthiest snack choice is definitely a piece of fruit, but rice cakes, crackers, a couple of biscuits, a small bag of crisps, a cereal bar, or a yogurt are good snack choices too." Which i've been told is bad, crisps, biscuits etc.

My a1c is alway around 70. I've read on here it should be lower than 50.

Even though I've been to nurses for check ups etc I've not been sent to a consultant (dont know if this is needed) and no ones told me about how much insulin is right to inject (body weight is 13.5 stone).

So what I do is have a excel sheet and guess the amount then if after its right, write it on the excel sheet.

So i'm here to see
is a constent 70 a1c is bad?
what else I could eat which I can buy from a shop for snacks which is doesnt move blood much?

 

[Northerner]

Hi,
Been T1 for now 5 years, they said I was a 1 in a million case, never over weight, did sports, parents dont have diabetes, I believe it was a virus.

I have a hard time trying to eat food which doesnt effect my blood after 4pm-sleep.
I've cut all sugar out, chocolate, coke etc. Sleep and breakfast I have it aced.
But after 5pm - Sleep I find it hard to find food to eat that fills me, so I end up eating nuts, fruit, a pastry, sandwich etc which takes it to 15mmol. Which I've been told is bad. Then I read stuff like this on this site "The healthiest snack choice is definitely a piece of fruit, but rice cakes, crackers, a couple of biscuits, a small bag of crisps, a cereal bar, or a yogurt are good snack choices too." Which i've been told is bad, crisps, biscuits etc.

My a1c is alway around 70. I've read on here it should be lower than 50.

Even though I've been to nurses for check ups etc I've not been sent to a consultant (dont know if this is needed) and no ones told me about how much insulin is right to inject (body weight is 13.5 stone).

So what I do is have a excel sheet and guess the amount then if after its right, write it on the excel sheet.

So i'm here to see
is a constent 70 a1c is bad?
what else I could eat which I can buy from a shop for snacks which is doesnt move blood much?

Hi Flashgordon12345, welcome to the forum 🙂 What insulin are you using? Have you ever been told about carb-counting, or been offered a diabetes education course, such as DAFNE? It sounds a little to me like your healthcare team might be a little ill-informed about Type 1, given what you have told us here - this is often the case as Type 1 is quite rare in the population and GPs and surgery nurses will be much more familiar with seeing Type 2 patients (even then, there can be a surprising lack of knowledge 😱 ). A Type 1 diagnosis has little to do with weight, apart from excessive weight loss that often happens in the weeks/months/days prior to diagnosis. Your experience is not dissimilar to most Type 1s (the same as mine, in fact!), so not really a million to one.

If you're not familiar with it, carb counting is a method of tailoring the amount of insulin you inject to match the amount of carbohydrate in your food (all carbs, not just sugary items). For an introduction, there's a page from Diabetes UK here (but better to go on a DAFNE course or similar):

https://www.diabetes.org.uk/guide-t...ts-of-carb-counting/learn-about-carb-counting

If you haven't been offered a course, then do ask your healthcare team. If you feel you are not getting good information from your surgery, then ask to be referred to a consultant - this is the normal route for a Type 1, at least in the early months and years of diagnosis. I'd also highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (whatever your age, it is packed with excellent information about all aspects of living with Type 1.

Feel free to ask any questions you may have, no question is 'silly', and someone here is bound to know the answer! 🙂

 

[Bruce Stephens]

Been T1 for now 5 years, they said I was a 1 in a million case, never over weight, did sports, parents dont have diabetes, I believe it was a virus.

That all sounds weird. What country are you in? T1 diagnosed in an adult is very much not 1 in a million, and T1 commonly presents in children who are underweight (suddenly, unexpectedly, underweight). (And with adults it's not particularly something that's associated with overweight people. I don't think it's even that strongly genetic, though there's presumably some genetic factors. There's apparently someone in my family who had diabetes, but nobody particularly close. I was diagnosed as a child, so not quite the same case.)

It sounds like maybe they haven't quite registered that you're T1, and haven't provided you with the support you really need.

 

[SB2015]

Hi @Flashgordon12345 the level of support you have been given seems somewhat limited, to say the least, for someone diagnosed with T1. As others have said people are usually supported by a consultant at the start, as most GPs and Practice nurses have a very limited experience of T1. It would be well worth asking for a referral to the specialist Diabetes team.

What insulins are you using? There is a lot more flexibility when you are using separate background (basal) and quick acting (bolus ) Insulin. This allows you to make changes according to what carbohydrates (and that includes pasta, rice, veg as well as the more obvious things such as cakes and sugar) you choose to eat. As @ Northerner said there is an education course specifically for those with T1 which helps you to learn how to make these adjustments, and if you have not been given the chance to do this it is worth asking for such a course.

The causes of T1 are a bit of a mystery, but the diagnosis is often associated with another illness as this puts the remaining beta cells under more pressure. The illness leads to a higher glucose levels and the need for more insulin which the body is already struggling to make. This can often lead to Ketoacidosis and admission to hospital at the time of diagnosis. Others are caught before this arises.

Once we know what insulin regime you are using it will be easier for us to suggest strategies that can help you to reduce your HBA1c to a safer level.