Newly Diagnosed T1

[MandieA]

Hi everyone,

My name is Mandie, I’m 45 and was diagnosed with type 1 on the weekend when they discovered my ketone level was at 2 and my bg was 18.4

I was put on a drip on Saturday to try to reduce ketones. Got down to 1.3 which was better. Had my 1st appointment with clinic on Monday. My Ketones we’re back up to 1.7 and bg was 20.2

I’ve got my insulin, I’m doing my semglee every day but I was told I only need to inject with the other one if I’m eating carbs so trying to cut them down to just evening meal. I think I’m doing ok, latest readings are now between 11 and 13.

Question: Am I doing the right thing? I’m getting so much advice from other people to say I have to inject & eat 3 times a day.

Also, the needles the hospital pharmacy gave me are bigger than the ones the clinic gave me, it’s hurts when I inject so now I get worked up before I do them.

Thank you for reading

 

[urbanracer]

Hi everyone,

My name is Mandie, I’m 45 and was diagnosed with type 1 on the weekend when they discovered my ketone level was at 2 and my bg was 18.4

I was put on a drip on Saturday to try to reduce ketones. Got down to 1.3 which was better. Had my 1st appointment with clinic on Monday. My Ketones we’re back up to 1.7 and bg was 20.2

I’ve got my insulin, I’m doing my semglee every day but I was told I only need to inject with the other one if I’m eating carbs so trying to cut them down to just evening meal. I think I’m doing ok, latest readings are now between 11 and 13.

Question: Am I doing the right thing? I’m getting so much advice from other people to say I have to inject & eat 3 times a day.

Also, the needles the hospital pharmacy gave me are bigger than the ones the clinic gave me, it’s hurts when I inject so now I get worked up before I do them.

Thank you for reading

Hi @MandieA and welcome to the forums and the club that nobody wants to be in.

It takes a while to get glucose levels under control and it's normal to increase insulin dosage slowly over a few weeks. You will probably be advised by your carers how to do this.

We are all different in the way we respond to carbs and insulin so it's difficult to be specific but generally if I don't eat carbs then I don't inject for the meal. There are some issues to watch for such as the body turning protein into glucose but I wouldn't worry about that right now. You still need your long acting insulin though, even if you don't eat - this sweeps up the continual trickle of glucose from your liver that provides your body with energy for basic functions.

Carry on doing what your doing and bring your glucose levels down slowly as rapid drops can make you feel pretty rough. I was over 30mmol at diagnosis and remember this period well!

As for injection pain, where on your body are you injecting? Make sure you don't do it in exactly the same place each time.

Edited to add:- I'll tag a few T1 colleagues who might be able to offer additional info. @Jaylee @Juicyj @In Response @Marie 2 @Antje77

 

[TashT1]

Hi Mandie, I’m glad you found the forum early into diagnosis as it will really help, there’s lots of people to support you.

Some clinicians aren’t a fan of low carb diets, especially for type 1’s who in theory can eat whatever. The tricky part is that you can only eat what you want if you know the correct dose of bolus to give. Are you using novarapid or something else?

In the beginning it might make sense not to make too many diet changes, this will give you opportunity to see how your body responds to fixed doses of insulin & a baseline of data to work from. Right now your team should be helping to adjust your basal & bolus doses to bring those numbers down.

It’s unclear from your post whether you are fasting or just eating low carb? What are your numbers like before & after meals? If you are not already keeping a food diary you should, there are various apps that can help you with this & you can get into the habit of carb counting. Carbs & Cals is a good app, weighing scales are also an essential item.

After about a month I switched to a low carb diet & got good results but I did it by figuring out how many carbs I could eat within my fixed dose of insulin. I then used this info to work out a carb to insulin ration & began varying my insulin doses based on the carbs I planned to eat. It’s a lot of trial & error, you need to be confident that you can deal with hypos if you make a mistake. That was just how I approached it & it will be different for everyone.

As for needles I had an issue with this at first & some mini meltdowns trying to psych myself up. I don’t like needles but know I can force myself to do it. After 9 months it’s less of an issue. If you found smaller needles better you can get your diabetes nurse to change your prescription. I use 4mm but I think there are smaller ones. Injecting for me isn’t pain free, I often hit blood or a nerve. As you go along you’ll find sites that are better than others.

 

[In Response]

Welcome to the club no one wants to join @MandieA
@urbanracer has provided some great advice.
It sounds like the two types of insulin you have are a slow acting one and a fast acting one.
The slow acting one works as a background to "mop up" the glucose that your liver will drip all day every day.
The fast acting one mops up the glucose from the food that you eat.
You should have the flexibility to eat as much or as little and as often or as infrequently as you like. It is usual to start with fixed doses of fast acting insulin. This is great for simplicity of dosing but a little limiting as you will need to eat a similar amount of carbs (all carbs break down into glucose) for every meal.
There should be no need to fast or eat low carb. Typically, when people are diagnosed with Type 1 they are advised against low carb as this will make it challenging to work out insulin doses. But if you are the sort of person that doesn't eat breakfast, do not feel the need to eat 3 meals a day. Likewise, if you are a grazer who snacks throughout the day, fell free to have 4, 5 or 6 meals and inject for each.

The three pieces of advice I would pass on to someone newly diagnosed are
- do not expect perfection with your blood sugars. There are many many things that can affect our levels including food, exercise, stress and some think even the colour of our socks. So, you will be disappointed if you try to control diabetes
- Type 1 and type 2 are different conditions. We share similar symptoms and a name but Type 1 is very different. For example, we cannot go into remission by eating low carb.
- Diabetes should not stop you doing what you want. It may seem daunting at the moment but over time you will learn techniques for dealing with food you don't recognise or doing exercise or travelling (when we can) or partying or ..

Finally, if your needles are longer than you had at the hospital, do not be afraid to request shorter ones. Most people now use 4mm needles. If this is not on your prescription, request them.

 

[Daibell]

Hi. When on insulin you can eat when you want and don't have to have 3 meals per day. It's usually better to spread the meals out a bit to reduce BS peaks and troughs but there are no rules. As a generalisation if a meal has less than, say, 25 gm carbs you may not need to inject your mealtime Bolus insulin. You should be taught carb-counting for your mealtime insulin so you can work out what to inject, if any, for each meal. For needles, most of us now use 4mm so do ask your surgery or hospital to prescribe those if yours are longer. I think they are the shortest you can get.

 

[MandieA]

Thank you all so much for your supportive words and advice. It's just so new and I think I've just gone into a bit of a panic.

I'm not much of a big eater during the day, never have breakfast, sometimes a sandwich for lunch but not often and don't tend to snack (apart from Hariibo and that's out the window now!). I do have a good meal in the evening though and I am having carbs with that so I make sure I dose myself accordingly with my Lispro.

My readings are:
Monday - 17.2 before evening meal then 19.9 before bed
Tuesday - 7.7 before evening meal then 13.5 before bed

The needle problem I that I was using 0.23 x 4mm but hospital gave me 0.25 x 4mm and its amazing the difference that has made. Before I didn't feel it but now it really stings/hurts. I'm injecting in different places on my stomach and occasionally on my leg to give my stomach a break.

I'm sure it will get easier but I just wake up in the morning and realised I have to do this forever now and it gets me down.

Thanks again everyone, I'm sure I will be looking on this forum a lot for advice xx

 

[In Response]

@MandieA you don't have to chuck your Haribo out the window.
They can be used as hypo treatments.
And, if you just fancy a few, once you start carb counting, you can dose your insulin for them.

There should be nothing you cannot eat ... although some thing are a bigger challenge for calculating your insulin dose so you may choose to avoid them.

 

[MandieA]

@MandieA you don't have to chuck your Haribo out the window.
They can be used as hypo treatments.
And, if you just fancy a few, once you start carb counting, you can dose your insulin for them.

There should be nothing you cannot eat ... although some thing are a bigger challenge for calculating your insulin dose so you may choose to avoid them.

Thank you. I've got another appointment with the clinic next Friday so I will go with a list of questions ready. I'm sure once I understand it more, I will get on better with it (great news about Haribo) x

 

[TashT1]

My readings are:
Monday - 17.2 before evening meal then 19.9 before bed
Tuesday - 7.7 before evening meal then 13.5 before bed

Are you eating late in the evening & then going to bed within a couple of hours? Ideally you need to test before a meal then 2hrs afterward. Plus morning & before bed. I personally would also test during the day even when not eating to gather data on how my basal is working.

Also if you wanted to eat lunch without injecting you can probably get away with up to 10g of ‘free’ carbs. It gives the flexibility of eating if hungry without adding more injections to your day. You could eat egg based dishes, a fry up without the bread, salad with cheese & cold meats. There’s lots of options that will put you on until the evening meal & you probably wouldn’t need insulin.

Writing down questions for appointments is a must, it really ensures you have a meaningful consultation. Have they done antibody & c-peptide tests? The antibody test confirms that your pancreas is under autoimmune attack and the c-peptide gives an indication of how much (or little) insulin you are producing. This will give you an indication of whether your pancreas will help you out with insulin supply for awhile. You can also ask about you hba1c which is a 3 month average of your BG levels.

 

[MandieA]

Are you eating late in the evening & then going to bed within a couple of hours? Ideally you need to test before a meal then 2hrs afterward. Plus morning & before bed. I personally would also test during the day even when not eating to gather data on how my basal is working.

Also if you wanted to eat lunch without injecting you can probably get away with up to 10g of ‘free’ carbs. It gives the flexibility of eating if hungry without adding more injections to your day. You could eat egg based dishes, a fry up without the bread, salad with cheese & cold meats. There’s lots of options that will put you on until the evening meal & you probably wouldn’t need insulin.

Writing down questions for appointments is a must, it really ensures you have a meaningful consultation. Have they done antibody & c-peptide tests? The antibody test confirms that your pancreas is under autoimmune attack and the c-peptide gives an indication of how much (or little) insulin you are producing. This will give you an indication of whether your pancreas will help you out with insulin supply for awhile. You can also ask about you hba1c which is a 3 month average of your BG levels.

Thank you so much for all the advice, it's great.

Yes, I eat late because my kids don't get home until 8pm and then I go to bed a few hours later. They also only circled every other time on my book to fill in.

Thanks for the food tips. Although great news, my doctors rushed through a script this evening for the correct needles so I'm not so scared now and might try eating more regularly.

They did mention that they were going to test my blood for more (sounds like the things you mentioned). I'm guessing they will run through it with me next week when I go in.

Definitely will do a list, I didn't really ask anything on Monday as I didn't know what I needed to know tbh.

Thank you again, all of you. I'm so glad I found this forum x

 

[MandieA]

Copy of my diary x