Newly diagnosed and struggling

[Miss Piggywig]

Hi, I can't believe how difficult this is! I'm carb counting and I'm gaining a better understanding of my ratios but need to work out how they change throughout the day. I've been low carb for 8 years ( was diagnosed Type 2 and with low carb controlled blood sugar, now diagnosed with slow on set type 1) been told I need to eat carbs with every meal for insulin to work. Also told that to much protein will spike my bs. I'm so confused. The weight is piling on and numbers randomly rise. They come down after meals but then 2-3 hours later start to raise with no food. I think just thinking about a snack of any kind sends it up . I'm only 3 weeks in and got the figures from generally 15-20 done to 9-11 but really want them 5-7. Is this manageable?
Should I eat low carb? Or is there an ideal amount of carbs per meal?
Thanks for reading.

 

[Rachox]

I’m type 2 so can’t help you but I’ll tag in @Antje77 who has LADA and eats low carb, I hope she can help you.

 

[TG4567]

Hi, I know how you feel, could have written this myself but 6 months diagnosed and my numbers getting worse so will read replies with interest

 

[jessA2024]

Hi, I know how you feel, could have written this myself but 6 months diagnosed and my numbers getting worse so will read replies with interest

I'm.in same boat been treated as type 2 for 8 years in on 36 unit slow insulin however nunbefs still high

 

[Antje77]

I’m type 2 so can’t help you but I’ll tag in @Antje77 who has LADA and eats low carb, I hope she can help you.

Thanks for tagging me, too tired with my new job really but I'll give it a go.

I'm only 3 weeks in and got the figures from generally 15-20 done to 9-11 but really want them 5-7. Is this manageable?

I think this is the main point: you're only 3 weeks in!
It takes time to find your ratios, and it also needs a basal dose that't correct, which needs time to find as well.
This is a marathon, not a sprint.

been told I need to eat carbs with every meal for insulin to work.

Not true. Insulin works without carbs as well, that's why we use correction doses.

Also told that to much protein will spike my bs.

Some people find they need to dose for protein if they eat very little to no carbs with a meal. I wouldn't worry about this for now, it only becomes relevant after you've got a bit more of the basics tackled.

I'm only 3 weeks in and got the figures from generally 15-20 done to 9-11 but really want them 5-7. Is this manageable?

This is great progress in only 3 weeks!
5-7 is not realistic all the time for most. Even non diabetics go higher than 7 after meals for a while.
What about sticking to the general advice to try to keep mostly below 10 for now, you can always tweak your goals when you get more of a grip on things.

Hi, I can't believe how difficult this is! I'm carb counting and I'm gaining a better understanding of my ratios but need to work out how they change throughout the day.

Do you log the carbs and insulin doses for every meal, plus before and after numbers to get an idea of how much insulin you need?
Best to compare breakfast with breakfast, lunch with lunch, dinner with dinner, ratios may be vastly different depending on time of day.

I think this is your best bet on getting a better understanding on how to dose, as long as you also keep an eye on your basal dose being correct.

Lastly, your profile still says T2 on tablets, you might want to change that to prevent confusion.

Good luck!

 

[Daibell]

Hi. I would challenge the medics when they say you need to eat carbs with every meal to make the insulin work; it sounds like dated advice. Insulin doesn't need carbs to work but the insulin dose needs to be matched as far as possible to the carbs you take. If you are on twice a day mixed insulin then it makes more sense but if on Basal/Bolus then insulin is adjusted to the carbs you eat. It's called 'carb counting' and something we all do (or try!) where the Bolus is adjusted at each meal to the carbs you plan to eat. BTW eating too many carbs would explain the weight gain so decide how many carbs you need or want and adjust the Bolus. Seek advice from the medics if needed. I was started on carb-counting by my DN as soon as I was started on the Bolus insulin.

 

[Melgar]

Thanks for tagging me, too tired with my new job really but I'll give it a go.

I hope your new job goes well, and it's not too tiring or too stressful

 

[In Response]

Hi @Miss Piggywig

As frustrating as it may feel at the moment,, it is good news that you have the correct diagnosis and that your BG is coming down. It is common to adjust it slowly to give your body time to adjust.

There is often a lot of debate about "what is the right diet for someone with Type 1 diabetes?" The usual consensus is that it is the same healthy (whatever that means to you) diet as you would eat without diabetes as long as you can match the insulin to what you eat.
When it comes to carbs there are two sides to the coin
- the more carbs you eat, the greater the impact of a miscalculation of your insulin dose. For example, if you are using a ratio of 1 unit of insulin to every 10g carbs whereas it should be 1g insulin to 12g carbs, and you eat a meal with 120g carbs, then you will calculate 12 units of insulin (120/10) whereas you really needed10 units (120/12). The difference would be less on a lower carb meal.
- low carb diet increases insulin resistance. Therefore, you need more insulin ,especially your basal insulin. In addition, in the absence of carbs, our body will break down protein to produce the glucose it needs so with a very low carb diet, you will need to consider protein in your insulin calculations.

I tend to go for the middle ground - around 50g carbs per meal which keeps the insulin dose low enough that I do not worry about over-calculating but high enough that I do not need to worry about insulin resistance and dosing for protein.

It may take time to decide the diet that suits you and to work out your insulin to carb ratio which may be different for different meals (we often need more in the morning) and will change as more of your insulin producing cells die off.

The last thing I will add is the debate around whether insulin causes weight gain. It is not one of the side effects listed on the patient information leaflets for common insulins. It is often a concern because it is common to lose weight before diagnosis and that weight to return when our body gets the insulin in needs so some think insulin is causing weight gain. I have also seen suggestions that excess insulin (as needed when you have insulin resistance) causes weight gain. I know that after injecting insulin for 20 years (and my body producing it for longer), I have not gained any weight.

 

[Juicyj]

Hello @Miss Piggywig And welcome to the forum - lots of great advice above.

It is a minefield getting used to insulin and carbs, but only you will start to work out how your body responds and how best to manage your diabetes, so becoming an expert in time and taking full control is your best way forward, soak up as much information as you can, at this present time it's best to acknowledge the numbers and see and learn about where you can tweak them to get them down, it's definitely a marathon at this stage though so don't expect quick results, just take pride in the fact that you are doing your best and that's all you can do.

Carbs with every meal... mmmm - expect to hear lots of expert advice from non diabetics, only those living with it know how this really works, that being said my diabetic nurse is an absolute gem with advice and knowledge but even she will admit to not knowing the full extent of t1d management, which is honest and respectful to hear.

Also keep talking to us, diagnosis brings a whole set of emotions to the fore, having peer support is vital to just off load and not feel so alone, we are all here to help.

 

[Miss Piggywig]

Thanks for tagging me, too tired with my new job really but I'll give it a go.

I think this is the main point: you're only 3 weeks in!
It takes time to find your ratios, and it also needs a basal dose that't correct, which needs time to find as well.
This is a marathon, not a sprint.

Not true. Insulin works without carbs as well, that's why we use correction doses.

Some people find they need to dose for protein if they eat very little to no carbs with a meal. I wouldn't worry about this for now, it only becomes relevant after you've got a bit more of the basics tackled.

This is great progress in only 3 weeks!
5-7 is not realistic all the time for most. Even non diabetics go higher than 7 after meals for a while.
What about sticking to the general advice to try to keep mostly below 10 for now, you can always tweak your goals when you get more of a grip on things.

Do you log the carbs and insulin doses for every meal, plus before and after numbers to get an idea of how much insulin you need?
Best to compare breakfast with breakfast, lunch with lunch, dinner with dinner, ratios may be vastly different depending on time of day.

I think this is your best bet on getting a better understanding on how to dose, as long as you also keep an eye on your basal dose being correct.

Lastly, your profile still says T2 on tablets, you might want to change that to prevent confusion.

Good luck!

Thank you for such an information filled reply. I hope you are enjoying your new job. I have changed my profile. I'd completely forgotten that information was on there.

I have started logging the different meals. I've been using the same ratio for each meal. So this will be interesting to see. Breakfast today was a spike. So will see what happens tomorrow. I log everything on carbs and cal and add to my freestyle libra. I guess have to accept the spikes sometimes as so such more at play then just what I eat.

 

[Juicyj]

Breakfast today was a spike. So will see what happens tomorrow. I log everything on carbs and cal and add to my freestyle libra. I guess have to accept the spikes sometimes as so such more at play then just what I eat.

Spikes are normal - we all get spikes even non diabetics, spikes become an issue when they don't come back into range 3-4 hours after eating, which indicates that not enough quick acting insulin was used.

In regards to insulin/carb ratios, me personally, I cannot eat carbs before 12, I eat protein and low carb before lunch as insulin resistant, then after lunch and once more active I can tolerate carbs better as more active. I still have to take insulin for low carb/protein too as these convert to glucose.

If levels aren't coming down gentle exercise as well as insulin corrections help me get them back into range.

 

[CheeseSeaker]

Hi, I can't believe how difficult this is! I'm carb counting and I'm gaining a better understanding of my ratios but need to work out how they change throughout the day.

Brilliant - its the only way to get an understanding of how much you need.

I've been low carb for 8 years ( was diagnosed Type 2 and with low carb controlled blood sugar, now diagnosed with slow on set type 1)
been told I need to eat carbs with every meal for insulin to work.

I remember being told that a long time ago - its rubbish as far as I've ever experienced. If I eat nothing and inject insulin - my BG drops like a stone. The reasoning there is the insulin is working without any carbs - so I'd ignore this advice (personally)

Also told that to much protein will spike my bs. I'm so confused.

It can for some people - protein can be broken down into carbohydrate molecules to some degree - some people struggle lots with this, others not at all - never seemed to make much difference to me - I tend to ignore the protein and bolus for direct carbs.

The weight is piling on and numbers randomly rise. They come down after meals but then 2-3 hours later start to raise with no food.

Could be lots at play here - complex carb/fatty foods (pizza, pasta, curries) can do this as they don't get broken down in the gut in the same timeframe (due to fats) so can cause highs way after 3-4 hour peaks

Which insulins are you using? There are ultrafast ones - that hit the carbs quicker (e.g. Novorapid doesn't really start working for 1 hour, peaks at 2 and is pretty much exhausted by 4 hours, Lyumjev is working at 15 mins - peaks at 45, and is exhausted by 3-4) - these numbers are different for all of us, but thats a good rule of thumb to start with.

The ultrafast insulins can make it easier to hit the rise in food in your BG - you inject at the point you eat, rather than the 'Rapid' insulins where you should inject 30mins to an hour before eating (this can be tricky to do every day - but it helps hit the post meal highs as the insulin is working about the same time as your food is digesting.

Other issue could be basal (background) insulin - are you injecting or on a pump?

I think just thinking about a snack of any kind sends it up . I'm only 3 weeks in and got the figures from generally 15-20 done to 9-11 but really want them 5-7. Is this manageable?

Absolutely - its the start of your path to getting it balanced - takes time but you'll do it, and are already making good progress.

Should I eat low carb? Or is there an ideal amount of carbs per meal?

You can do - it certainly helps some people - did it myself for years (without knowing it) on injections (MDI - multiple daily injections) as it was easier to handle - as you get better at it (know your ratios, what foods are a 'challenge' etc) you can start to eat like a normal person again - just takes a while to work it all out.

Thanks for reading.

 

[Miss Piggywig]

.

Which insulins are you using? There are ultrafast ones - that hit the carbs quicker (e.g. Novorapid doesn't really start working for 1 hour, peaks at 2 and is pretty much exhausted by 4 hours, Lyumjev is working at 15 mins - peaks at 45, and is exhausted by 3-4) - these numbers are different for all of us, but thats a good rule of thumb to start with.

Other issue could be basal (background) insulin - are you injecting or on a pump?

I take 'humalog' I've been tole to take it 15-20 mins before food. But it does seem to take longer to take effect. I'm on injections. Basal seems ok as bloods now coming down to around 6 over night. So feel if I up that I could drop too low.

You can do - it certainly helps some people - did it myself for years (without knowing it) on injections (MDI - multiple daily injections) as it was easier to handle - as you get better at it (know your ratios, what foods are a 'challenge' etc) you can start to eat like a normal person again.

Oh I can't wait

 

[CheeseSeaker]

Ok - so things to consider (if not now then in the future) that might help when you get a bit more personal experience with how things work for you (Diabetes is great as its different for all of us in some ways)

Humalog is classed as a 'Fast' insulin (rather than 'slow-acting') but thats still 1-2 hours before it kicks in at full capability and can be considered 'expired' by 4 hours - can start acting in 20 mins but more likely 30-45 for most people.

Might be worth pre-bolusing at 30 mins and seeing if that helps, then if increase a bit if it does till you find the 'sweet spot'.

Lyumjev is Humalog with 'stuff in' to make it work quicker - its usually active in 15 mins and peaks at 45-60, so pre-bolusing is usually not needed. Worth considering a switch if you're struggling to get the humalog to do its stuff for you,

Negatives with Lyumjev - it can sting as you inject (this goes away over time), it can hit very quickly, so it can hit your system before you've digested the food, Thats a learing process for you to try out (with lucozade available in case you drop too far).

Try low carb to work out how you handle it, and when you're happy, increase your carbs slowly. Bare in mind high carb/fatty foods (pizza, pasta, curries etc) do odd things as you digest them and take different approaches so you can eat them without problems, steer away from them till you have your settings sorted and do some reading up on strategies to handle pizza etc.

You will get to a place where you can eat anything again - its a learning process but you'll do it if you don't mind a bit of work to understand how to get there (I eat anything and everything, just have to think about how I can do it)