Hi there, newly diagnosed type 1.

[Pat91]

Hello all, good evening I have just been diagnosed with type 1 a week ago, so a bit overwhelmed by it all still, but looking forward to gaining knowledge from you guys on the forum

 

[Inka]

Welcome to the club you didn’t want to join @Type1Pat from another Type 1.🙂 A Type 1 diagnosis is a huge thing to get your head round, but it does gradually get easier. Be kind to yourself and pace yourself.

How were you diagnosed? What insulins are you on? I’m on a pump now and have been for years, but before that was on injections. The good news is the tech we have now does make day to day life easier.

 

[Pat91]

Hi there, I was taken to hospital early hours of Thursday morning with DKA , my bloods were extremely high as I didn't know I had diabetes, my glucose was 36.9 and my ketones were 6.9, so extremely lucky I'm ok really, I'm currently on 10 units of Nova rapid 3 times a day and 26 units of lantus at night. It does sound a lot easier having a pump from what I have been reading.

 

[trophywench]

Not easier! No. Different, Oh yes. Insulin needs do not stay static for ages at a time whatever way we deliver it - needs adjustment every so often, as well as still needing to work out how many grams of carbohydrate in whatever we decide to eat, in order to give ourselves the right amount of fast acting insulin to counteract those carbs. But, they haven't even as yet introduced you to that - it really is very early days for you.

So - my honest advice is to learn to walk before you try to run, because Diabetes is a marathon, not a sprint - and NEVER stop asking questions whatever they happen to be!

 

[Inka]

Hi there, I was taken to hospital early hours of Thursday morning with DKA , my bloods were extremely high as I didn't know I had diabetes, my glucose was 36.9 and my ketones were 6.9, so extremely lucky I'm ok really, I'm currently on 10 units of Nova rapid 3 times a day and 26 units of lantus at night. It does sound a lot easier having a pump from what I have been reading.

Very scary for you! I hope you’re feeling better now you’re on insulin. I can’t remember how soon i felt better but it was pretty quick. I hadn’t realised how ill I’d been feeling.

@trophywench is right that a pump isn’t easier. It still needs work and thought. I had mine after a number of years of injections.

Are your diabetes team keeping in close contact with you?

 

[Pat91]

Good morning all, were you able to get your pump on the NHS , and could this be something I'm offered in the future, I have yet too hear from the specialist but they have said they will be in contact in due time, I understand everyone is different so will require different readings but I woke with a reading of 8.3 glucose, had my 10 units of Nova rapid and for breakfast 2 boiled eggs and 2 wholemeal dry toast, do you think I'm on the right sort of track. Thank you.

 

[rebrascora]

Hi and welcome from me too.
I am just coming up 2 years down the line with my diagnosis and it is amazing how much more confident I am with managing it now and I feel fitter and healthier than I have for 30 years, so there can be positives to it. You have been unfortunate to be diagnosed at such a difficult time in the NHS but it is great that you have found this forum, because peer support is hugely beneficial with diabetes and even in better times HCP support is not as intensive for adults as it is for children who are diagnosed, so you are left to do quite a lot of figuring stuff out yourself. I would have been totally lost without the advice and tips and general uplift I have received from the wonderful members here.

I found that experimenting and testing lots (much more than they recommend) was key to learning how my body responded to food and insulin. Having the Freestyle Libre system makes that experimenting so much easier and I would definitely recommend you pushing for that to help you manage your diabetes if you haven't got it. One of the qualifying factors is testing 8 or more times a day. As regards pumps, they are mostly NHS funded but only a small percentage of people have them and you really need to learn how to manage things with MDI first. There is a lot of tweaking involved so you need to learn how your body responds first and some people simply will not qualify as they are very expensive. Personally, now that I have Libre I am very happy to continue with MDI but I know most people who get a pump love them and would not go back. You have a long way to go with learning to carb count and adjust your insulin doses with MDI first, so just take it one step at a time.

Just out of curiosity, was there any reason why you had dry toast? I am wondering if NHS staff have been emphasizing a low fat diet to you? Many of us find that more fat and less carbs makes our diabetes easier to manage but since you are currently on fixed units of NovoRapid you would need to be careful about reducing your carb intake. I don't think it would be unreasonable for you to have butter on your toast though unless you prefer it dry.

 

[helli]

Welcome to the club @Type1Pat .
Sounds as if you had a traumatic diagnosis. The good thing is you now know what you are dealing with. Type 1 can be frustrating at times but other times I forget about it. I think of it like having a toddler who misbehaves sometimes but mostly is a sweetie.
There is a lot to learn such as adjusting your doses for food, exercise, illness, etc. Pumps make the adjustments easier but are useless if you don't understand the logic. Injections simplify this logic so are a great place to start.
I injected for 12 years before pumping. I think more people seem to be getting pumps earlier now but I am glad to have had the time to learn the logic and for it to become second nature. Unfortunately, pumps can fail. It is rare but it happen. When it does, it is never at a great time, it is stressful and young you to return to injections. If that is not second nature, the stress of remembering what to do, how much to inject, etc is greater.
All of that said, Type 1 is not as much of a life changer now as it used to be. When I was diagnosed, I was told it should not stop me doing what I want. And it hasn't. Like it hasn't stopped Henry Slade playing rugby for England or Theresa May running the country.
Ask questions, air your frustrations, just chat. We have been where you are. And all still learning.

 

[Pat91]

Hi guys thank you for the warm welcome, certainly have a lot to learn but sounds like I'm in good company, do you guys have 3 meals a day and what doses of insulin do you take, also any advice on meals to have and is snacking in-between meals good or bad. Not sure on the diet side of things yet hence the dry toast , also do you recommend only checking before Meals and not after as I was advised to by NHS staff. Thank you .

 

[Inka]

Good morning all, were you able to get your pump on the NHS , and could this be something I'm offered in the future, I have yet too hear from the specialist but they have said they will be in contact in due time, I understand everyone is different so will require different readings but I woke with a reading of 8.3 glucose, had my 10 units of Nova rapid and for breakfast 2 boiled eggs and 2 wholemeal dry toast, do you think I'm on the right sort of track. Thank you.

Yes, pumps are available on the NHS but you need to qualify for one. Then you need to have a certain level of ‘learning’ - eg you have to know how to carb count (count carbs and adjust your insulin to match). A pump doesn’t take over control of your diabetes - you still have to do that. It’s still work. The main benefit is the ability to match your basal insulin to your needs hour by hour.

The important thing to remember is that the key to controlling Type 1 is insulin. We don’t have to eat a special diet (but do need to think about what we’re about to eat and make sensible choices).

You’re on fixed dose of Novorapid at the moment so you’ll need to eat the same amounts of carbs for each meal. Hopefully you’ll soon be changed onto a more flexible regime. Insulin is intimately connected with carbs. In time you’ll know your meal ratios (how many carbs one unit of insulin will deal with), count the carbs in your meal and adjust your Novorapid dose to suit.

It’s not hard to do - so don’t worry about that. You’ll pick it up easily when you’re shown. For now, keep good records of what you eat and your blood sugar results.

Be prepared for hypos. Often once your body is getting the insulin it needs, your own insulin-producing cells will recover a little and push some insulin of their own out. Test lots and be cautious.

 

[Inka]

Put something on your toast for sure! Please don’t think certain foods are forbidden. All you’re going to be doing is learning to be your own pancreas and do the job that used to do - that is, injecting the appropriate amounts of insulin to control your blood sugar.

Don’t get confused by advice aimed at Type 2s. That’s a different condition.

 

[Pat91]

I have been reading quite a lot online, as want to know as much as possible really, I have heard about the rule of 500? Apparently I need 1 unit of insulin per 10g carbs, I have been finding that upon checking my blood sugar's before bed they are around 6.5 to 9, so because I'm on 26;units of lantus I'm having to have a sandwich before bed too last Me till morning, will I always be on a night time dose or is this something that i may over time be taken off. Thank you.

 

[Pat91]

Put something on your toast for sure! Please don’t think certain foods are forbidden. All you’re going to be doing is learning to be your own pancreas and do the job that used to do - that is, injecting the appropriate amounts of insulin to control your blood sugar.

Don’t get confused by advice aimed at Type 2s. That’s a different condition.

Ok thank you, does type 1 and type 2 vary quite a lot in terms of diet then.

 

[Inka]

I have been reading quite a lot online, as want to know as much as possible really, I have heard about the rule of 500? Apparently I need 1 unit of insulin per 10g carbs, I have been finding that upon checking my blood sugar's before bed they are around 6.5 to 9, so because I'm on 26;units of lantus I'm having to have a sandwich before bed too last Me till morning, will I always be on a night time dose or is this something that i may over time be taken off. Thank you.

Ok, the rule of 500 is more ‘advanced’ learning. Read as much as you want but that’s not something you need to know now.

The 1 unit to 10g carbs is a ratio, as I described above. It’s common to be started on that ratio but in reality ratios vary, person by person, meal by meal. So someone might have say a ratio of 1 unit to 8g for breakfast, 1 to 10g for lunch and 1 to 12g for evening meal. Those are just examples.

 

[Pat91]

Oh right I see, I will put that on the back burner for now then. In your opinion what blood sugar level would I need to be at before bed in order not to have to eat a snack, bearing in mind I'm still required the 26 units of Lantus.

 

[Inka]

A good book often recommended here is Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the title - it’s informative for adults too. You don’t have to read it and take it in all in one go. It’s something you can dip into as needed.

Re bedtime - always be cautious. Next time you speak to your team, ask for a bedtime level to aim for. I used to aim for above 8 but your target might be different, especially as it’s early days ie it might be higher eg 10. If you’re concerned as to what’s happening overnight, then you can set an alarm to get up and test eg at 2am and see what’s happening.

The first weeks after diagnosis are hard as things change. It’s an information-gathering time as much as control - that is, testing lots, recording your meals, recording hypos or any issues.

 

[rebrascora]

I've never heard of the rule of 500? What is that?

As regards the bedtime snack, is that because without it you are dropping too low through the night and waking up hypo? If so, I wonder if your 26 units of Lantus is too much or alternatively whether injecting it in the morning might be a better option for you instead of at night as it has a peak of activity about 5 hours after injecting but many people need less insulin through the night so that peak can occur at a time when you need less and cause problems. You would need to discuss those options with your diabetes team. If your insulin dose is too high, you end up eating to match your insulin which can lead to weight gain, when your insulin should be adjusted to match your needs.
Insulin usage is very individual so they start you off on a "conservative" best guess and then adjust it, which is why keeping good records of what you eat each day and your readings is so important. I would definitely recommend you test 2 hours after meals as well. The more I tested, the more I learned. I self funded extra test strips to get more data and then self funded Freestyle Libre until I got it on prescription because the more info you have about your levels the better you understand things and can control it more effectively. That is my opinion anyway.

 

[Pat91]

Thank you for the recommendation, will have to have a look, I am logging all my levels plus what I'm eating. Think thats were I need the most guidance at bedtime as last night my readings were 6.9 before bed, so was worried it was too low, hence the sandwich. Will keep logging everything as you suggest and hopefully I will get an appointment with specialist soon, thank you.

 

[Pat91]

I've never heard of the rule of 500? What is that?

As regards the bedtime snack, is that because without it you are dropping too low through the night and waking up hypo? If so, I wonder if your 26 units of Lantus is too much or alternatively whether injecting it in the morning might be a better option for you instead of at night as it has a peak of activity about 5 hours after injecting but many people need less insulin through the night so that peak can occur at a time when you need less and cause problems. You would need to discuss those options with your diabetes team. If your insulin dose is too high, you end up eating to match your insulin which can lead to weight gain, when your insulin should be adjusted to match your needs.
Insulin usage is very individual so they start you off on a "conservative" best guess and then adjust it, which is why keeping good records of what you eat each day and your readings is so important. I would definitely recommend you test 2 hours after meals as well. The more I tested, the more I learned. I self funded extra test strips to get more data and then self funded Freestyle Libre until I got it on prescription because the more info you have about your levels the better you understand things and can control it more effectively. That is my opinion anyway.

In terms of my readings in the night I'm not sure, as have not done any since leaving hospital, I just remember the nurse telling me to eat something before bed when I was in hospital as my sugars were in the 6s and she was worried they would dip to low over night, I don't feel confident not having at least a sandwich before bed if my sugars are under 9 ,could I be overeating at night if this is the case. The 26 units just seems a big dose so I worry I would be too low in the morning, would you recommend I check in the night to make sure I'm not too low maybe without the sandwich at bedtime ? Thank you.

 

[Robin]

I've never heard of the rule of 500? What is that?

I just had to look it up. 500 divided by your total daily dose is supposed to give you the figure in grams of how many carbs one insulin unit covers. It wouldn’t work for me AT ALL and not for you, either I suspect, as we take so little basal.