T1D - fear of eating...

Heya @MsClarita

I know you're not alone in this, it's pretty typical to have a fear when the worry is that it will cause so much damage if you keep running high. What sort of levels are you getting at the mo ?

Ideally it would be really useful to start on a basal/bolus regime where you can match the carbs eaten to the quick acting insulin taken, as you can have so much more flexibility with food and if running high you can take a correction dose of insulin to bring levels down too. Can you call your Consultant/Diabetic nurse and ask about this ? I think you need to get onto this type of regime sooner rather than later and stating that you need to administer correction doses to bring your levels into range is vital. I don't think the advice given about running high is helpful as getting into range will help you put some weight on and feel more in control of your t1 management.

One thing I will say is that do NOT compare your numbers to T2's using low-carb to be in the 4-7 range, for most T1's that would be a completely unreasonable expectation.

For example: in the evening before bed I'm happy with 6-8, if its less than 6 and dropping even slightly I'll need a small snack, more than 8.5ish I'll take a relevant correction (my pump can do 0.1 of a unit so I can do very small amounts - ie I can have 0.1 of a unit) - but note that everyone is different, so dont base what you do on what I do, my blood sugar goes on a different rollercoaster ride everynight.

The numbers you have stated aren't that bad especially since you're not carb counting and on fixed doses - far far better than mine ever were.
The 9-11 before breakfast is likely dawn phenomenon or foot-on-the-floor , but this can only really be dealt with by correction doses, not the Lantus - many have this issue

Also whilst bad control can cause complications it is a 'can' not a 'guarantee', now-a-days there is much more available to help stop things/slow things down/deal with things.
If bad control automatically caused those thing I'd have lost my legs and my sight many many years ago, I mean you cant just ignore your control but you can only do your best and don't blame yourself if it doesn't behave as often it just wont through no fault of your own

I believe if you want to put on weight then eating additional protein is the way to do it if you are relying on injected insulin.
I also think you will find it easier to control blood glucose levels on low rather than high carbs. It can take some time for your body to adapt to low carbs for example to become 'fat adapted' on a keto diet can take a couple of months.
As others have said basal + bolus for meals and corrections of high blood glucose levels will give you greater flexibility.

@jonathan183 as someone who has had Type 1 for more than 15 years, i would recommend to avoid very low carb/Leto diet. It is much HARDER not easier. There is no need for someone with Type 1 to adopt a fat adapted keto diet unless they have other needs and a lot of time to calculate the insulin to protein ratio for every different type of protein: the insulin to protein ratio is different for nuts, salmon, prawns, eggs, cheese, ... I don’t eat meat but have read others find it is different again for beef, pork, bacon, etc.

In my experience, learning to carb count is much much easier.

And for someone like @MsClarita who is newly diagnosed with Type 1 with fixed insulin doses it is dangerous and almost certain to lead to hypos.

I agree with @Rokaab MsClarita’s levels are not concerning and with @Juicyj that would be worthwhile pushing to learn carb counting. I know different CCG are different but no appointment with a dietitian helped with car counting ... it seemed to focus on the traditional “reduce fats” message until the dietitian looked up and saw me with a bmi in the low 20s.

MsClarita, if you have the time and want to get ahead, you may benefit from the Bertie online course to teach yourself carb counting.

Remember, you are not alone, you are doing well and Type 1 is not type 2 so make sure you adopt techniques to manage the condition you have rather than the one the majority of diabetics have.

Good luck.

Rokaab said:

One thing I will say is that do NOT compare your numbers to T2's using low-carb to be in the 4-7 range, for most T1's that would be a completely unreasonable expectation.

For example: in the evening before bed I'm happy with 6-8, if its less than 6 and dropping even slightly I'll need a small snack, more than 8.5ish I'll take a relevant correction (my pump can do 0.1 of a unit so I can do very small amounts - ie I can have 0.1 of a unit) - but note that everyone is different, so dont base what you do on what I do, my blood sugar goes on a different rollercoaster ride everynight.

The numbers you have stated aren't that bad especially since you're not carb counting and on fixed doses - far far better than mine ever were.
The 9-11 before breakfast is likely dawn phenomenon or foot-on-the-floor , but this can only really be dealt with by correction doses, not the Lantus - many have this issue

Also whilst bad control can cause complications it is a 'can' not a 'guarantee', now-a-days there is much more available to help stop things/slow things down/deal with things.
If bad control automatically caused those thing I'd have lost my legs and my sight many many years ago, I mean you cant just ignore your control but you can only do your best and don't blame yourself if it doesn't behave as often it just wont through no fault of your own

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A truthful and lovely reply. X

MsClarita said:

Hi all,

I was diagnosed at the end of May, and am currently on fixed insulin doses - breakfast, lunch, dinner and long lasting at night.

Some days I really struggle with fear of eating, if my blood sugar is a bit higher then I feel like I can't eat too many carbs with a meal. I'm also afraid of snacking. I spoke with my consultant last week and he said it's ok to run a bit high for the time being, but I cannot get over the fear...all I seem to read is YOU MUST CONTROL THE DIABETES OTHERWISE YOU'LL GO BLIND / NEED AN AMPUTATION etc. It's really scary.

On the other hand, I remain considerably underweight, and I know I do need to put some on.

I'll be seeing a dietician "soon" (your guess is as good as mine) at which point I thin I will be able to start carb counting, but until then...any tips?

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Hi,

I can empathise very much with your concerns only having been diagnosed myself a few months before you. Please understand that it takes many YEARS of poor control before you are likely to start to get any of the complications that you are afraid of.

I agree with most here that you would probably be better on a fixed long acting/bolus short-acting regime. This will give you much more control over your diet than a fixed insulin regime will allow. I think I have been very lucky as my diabetes team have been excellent and very supportive.

If you can, I would try and get to see your diabetic team to discuss your treatment. I think that you would benefit greatly from some form of glucose monitor such as a Libre 2 which allows you to check your blood glucose without having to prick your finger tips all the time. It will also allow you to recognise patterns and how different foods/exercise/insulin affect your blood sugar. Unfortunately, this will depend very much on your local Health Authority and seems to be a bit of a lottery but it is definitely worth asking about one. Then, you should enquire about a long-acting regime combined with short-acting bolus doses. Once you have this in place, you can start carb-counting and adjusting your own insulin. There are many apps out there to help - I was recommended one called "Carbs & Cals" which I have on my phone by my team and a friend - it costs a small amount of money (about £5 if I recall correctly) but I did find it very useful until I (sort of) got the hang of carb guessing for myself.

There are times when I avoid carbs as I want a relatively flat blood glucose profile (like when I am at work) but it is difficult to avoid them forever if like me, you still want to enjoy a bit of bread, rice, potatoes, noodles etc.

Hopefully, you can switch regimes soon and get to eating what you would like whilst still maintaining control of your diabetes. I have found that there are a lot of kind people on this forum with a wealth of knowledge to support you so don't worry too much. Glucose spikes occur in non-diabetics after a meal too - as long as you adjust your insulin to match your meal and your blood sugar returns to a reasonable baseline by the time you're ready for your next meal, you will have a very low risk of developing the nasty complications that you worry about.

Best of luck.

MsClarita said:

My fasting levels are around the 8-9 level, then always rise to about 9-11 before breakfast, which I typically have about two hours after waking up. This is the one that most concerns me, when I spoke to the consultant last week she was reluctant to increase my lantus in case I was having hypos in the night. But I've been doing a few 3am pricks, and I'm nowhere near - around 7.

When I check before lunch, dinner and bed I can be anywhere between about 5.5 and 9. Pre-lunch today I was 7.2. I'm typically at the lower level later in the day. I cut my carbs right down for a few weeks, which brought the numbers down to 5 - 6 pre meals and bed, but my energy was on the floor so I've had to go back up again. But when I say up, I'm not eating as I was pre-diagnosis, carbs are sitting around 70g/day now.

I've just had to change diabetes nurse, due to a long story. Do you think they'd be able to speed up the transition to correction doses / carb counting if I ask? My experience with the team has been terrible so far.

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Hi,

It seems to be early days for you since diagnosis.
There's a steady "decompression" whilst you get your mojo back. Pulling BGs back inline too fast too soon could cause issues.
You are finding your feet with this there may possibly be a considerable amount of trial & error?
At this stage in the game, rolling with the program as directed by your HCPs.

A fair amount of the negative complications (the ones you've been reading online.) are what I heard 45 years ago as a kid.. Though they were "cautionary tales from the D ward" & pessimistic prognosis from very old medical books.

I will ask you this.. I do Lantus. Do you take yours in the evening?
I find my BG levels a little steadier to manage the latter half of the day with it. & even better with an evenings activity when it's meant to be tailing off?

Hi, just wanted to say hello and that I think it’s normal to be anxious around food at first. I think I read here, or another forum, that it takes around three years on average to get confident with food after diagnosis. I’m a year and a half in and the first few months (probably a year) I had a very limited diet - I still mostly eat bread and potatoes and have yet to try so many meals BUT I’m getting there and trying out things gradually and finding my feet, it just takes time. I struggle with gaining weight and found I could only just maintain 8 stone on 130 g carb a day so personally I have to eat more to try and gain, low-carb can be tricky if you’re very slim I think for some people. Anyway, hope you’re getting some more help with a dietician and I’m sure you will gain confidence in your own time x

In Response said:

And for someone like @MsClarita who is newly diagnosed with Type 1 with fixed insulin doses it is dangerous and almost certain to lead to hypos.

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Lower carbs requires less insulin ... I agree unless insulin dose is adjusted then it would lead to hypos.