Later life type 1

[Inka]

Oh right, I didn't realise that at all. They sent me home with some leaflets on type 1 including dietary recommendations so I've basically dropped free sugars and nearly all carbs.
You reckon I should keep eating normally (incl lasagne, fish pie, chicken Kiev types) even if they show high outcomes on Bs? Then agree adjustments with the nurses when I see them next week?
Pretty sure I've just repeated your post back to you but having in my own words will help this beginner!

Yes, I do, within reason. You might have to slightly reduce your normal diet if you’re seeing very high sugars, but you certainly shouldn’t be cutting out all carbs. The idea is you eat normally and then the nurses can see where your insulin needs adjusting. Type 1 is not something controlled by diet, it’s the insulin that’s the thing. Once you’re sorted, if you get a ‘bad’ blood sugar result, it won’t be the food’s fault, it will be the insulin - wrong amount, wrong timing, etc.

This is what I ate yesterday, to give you an idea: cereal, a flapjack as a snack, sandwich plus fruit plus yoghurt, potatoes plus salmon plus veg followed by apple crumble with custard (I don’t add any sugar to my custard). Pasta, rice, bread, quinoa, cereals - all fine. The ‘only’ thing is we have to learn to count our carbs and adjust our mealtime insulin to cover those carbs. We really do have ‘think like a pancreas’.

So yes, you can have lasagne 🙂 It would be really helpful if you could try to count the carbs roughly in what you eat as that will help get your mealtime insulin ratios right.

 

[everydayupsanddowns]

This is what I ate yesterday, to give you an idea: cereal, a flapjack as a snack, sandwich plus fruit plus yoghurt, potatoes plus salmon plus veg followed by apple crumble with custard (I don’t add any sugar to my custard).

And here’s mine:

2 croissants with jam, and ’proper’ coffee for breakfast
No lunch (so no lunch dose) - I was busking with my band, grabbed a beer afterwards
Pizza, garlic bread and salad
Apple oat and treacle tart with whipped cream afterwards.

It was a non-standard day (weekends often are), but carb loads varied from 0g to 100+g for different meals, and doses and insulin timings were varied to match. My CGM tells me I spent 94% of the day between 4 and 9, which I am hugely happy with. Though recognise I am cheating with the benefit of a hybrid closed loop insulin pump!

 

[Mumpie_olgran]

And here’s mine:

2 croissants with jam, and ’proper’ coffee for breakfast
No lunch (so no lunch dose) - I was busking with my band, grabbed a beer afterwards
Pizza, garlic bread and salad
Apple oat and treacle tart with whipped cream afterwards.

It was a non-standard day (weekends often are), but carb loads varied from 0g to 100+g for different meals, and doses and insulin timings were varied to match. My CGM tells me I spent 94% of the day between 4 and 9, which I am hugely happy with. Though recognise I am cheating with the benefit of a hybrid closed loop insulin pump!

Oh wow, that gives me tremendous heart thank you both.
OK maybe I will tuck in a bit more normally. I think having had such high Bs and DKA for much of last week, I'm really cautious about high Bs readings

 

[everydayupsanddowns]

Oh wow, that gives me tremendous heart thank you both.
OK maybe I will tuck in a bit more normally. I think having had such high Bs and DKA for much of last week, I'm really cautious about high Bs readings

A little caution is completely understandable! Especially after what you’ve been through.

In the long run you’ll learn to fit diabetes into your life, rather than your life having to fit around your diabetes. Some of this will be making compromises, and establishing a level of carb intake that you find gives you fairly predictable results (I find moderate carb helps me with this personally), but you should never feel limited. You choose to eat the way that suits you, and then use the tools you have to manage that. 🙂

 

[helli]

@Toooldfortype1 did the hospital give you strips to test your ketones?
It is the combination of high blood sugars and high ketones that put you in hospital with DKA. Therefore, I wonder if having the ability to test ketones would help alleviate some anxiety around eating carbs. And feed some of your hunger for data!

Talking of the data side, you asked about the downsides of a CGM. If You ignore the risk of data overload, I think the biggest risk is not understanding the limitations and assuming the CGM data is always correct without testing it against finger pricks when high or low.

 

[Mumpie_olgran]

Thanks Helli, yes got some ketone strips too. They were saying to test if consistently high Bs but I can't really remember what level that is. I guess it can't hurt having a few superfluous data points
I will try eating a bit more normally (ie with some carbs) and seeing what's what
Again - thanks to all responders, really helpful

 

[Mumpie_olgran]

Hi another new question...
Is there a decent app (apple or android) that would allow me to track glucose readings, meals, insulin, weight?
I've been scribbling manually and occurs to me there must be a better way!

 

[Leadinglights]

Hi another new question...
Is there a decent app (apple or android) that would allow me to track glucose readings, meals, insulin, weight?
I've been scribbling manually and occurs to me there must be a better way!

Not a user myself but quite a lot of people use Nutracheck, some apps are free but some you have to pay for.

 

[Tdm]

Not a user myself but quite a lot of people use Nutracheck, some apps are free but some you have to pay for.

If you are t1 you should get a cgm or flash montor on nhs. I use libre 2. Its downside is it tends to overreact on peaks and in dips ( for me, anyway). Its easy to see your stats and a good one to start on. I also find it gives me false nighttime lows, so have bought 30 days of dexcom g7. Dexcom is a bit steadier, you don't need to swipe your monitor for a reading, has a broader range of alarms, and with more stats, perhaps too many if anything.
With libre 2 you definitly need to check with fingerpricks before taking glucose/more insulin. Cos sometimes it tells porkys. Invaluble for the general trends though. If it didn't wake me up in the night i would probably stick with libre.
Have you got glucose tablets for lows? Jelly babies work ok bit i prefer glucose tablets, i think they are a bit quicker.
A would totally recommend a cgm. Game changer! You can delegate your thinking about diabetes to the alarms, and they are great to analyse what is happening and why. And if you are tecky there are a lot of unofficial apps and stuff to do (i didn't manage to get my blood sugars on a smart watch but a lot of people manage it)

 

[helli]

Hi another new question...
Is there a decent app (apple or android) that would allow me to track glucose readings, meals, insulin, weight?
I've been scribbling manually and occurs to me there must be a better way!

If you.get a CGM, the app allows you to enter notes such as meals and insulin ... and probably weight.
This would keep it all with your blood sugar readings so no need to record them again.
Whilst you are waiting for your DSM to get in touch, you could register for the free Libre trial on their website.
There is a lot of discussion about the "best" CGM but we are all different. Personally, I found the Dexcom app incredibly basic (and supported on far less phones) and the readings less accurate than the Libre. So, don't feel disheartened if your clinic does not prescribe the Dexcom - it is not the best for all of us.

 

[rebrascora]

I don't think the Nutracheck app will plot BG levels etc as I don't think it is specifically for diabetes, so I think the MySugr app might be more useful in this instance, but using something like the Nutracheck to get an idea of carb values will probably be helpful. I log all my info on my Libre reader others using a phone to scan will use the LibreLink app on their phone but I am not sure you could use this without a Libre sensor to be providing you with readings but you will be provided with Libre or one of the other CGM very soon I would hope so don't pay for an app to track your BG in the meantime. I am not sure if MYSugr still has a free version, but if so, that is what I would use until you get a CGM.

Whilst it is great to get nice in range readings, when you are newly diagnosed, your body has been running with really high levels probably for a few weeks or even months pre diagnosis and it does it's best to adjust to those higher levels over a period of weeks. If you drop them back down to normal in a matter of days, that puts a lot of strain on your body to readjust and the very fine blood vessels in the eyes are particularly vulnerable to these changes, so it is actually safer to reduce your BG levels slowly and aim for low to mid teens for the first week or two and then gradually single figures after a couple of weeks and eventually bring them down into range by week 4 or 5. I appreciate that DKA is scary but now that you are injecting insulin that is much less of a risk, but having hypos or risking damaging your sight is also scary. Diabetes is all about balance and changing things slowly and steadily. We often say that it is a marathon and not a sprint so try to be a bit more relaxed about it.

If you start eating more carbs your levels will go back up a bit but that is OK at this stage because that is easier on your body. The medical professionals will be expecting you to eat normally, not low carb. I can clearly remember my nurse telling me to eat normally when I was started on insulin. I had already had 6 weeks of progressively low carb eating to try to bring my levels down without insulin, so it was a bit difficult for me to suddenly change that, but for you are straight on to insulin and those doses have been suggested based on you eating a normal diet. If you are not eating carbs then you are injecting too much insulin and sooner or later you will hypo. Don't go stupid and eat bags of sweets and chocolate bars but a couple of slices of toast for breakfast or a bowl of cereal and a sandwich and soup for lunch and a kiev with a few chips or whatever for your evening meal and plenty of healthy veg of course is what your nurse will expect you to be eating and have suggested those doses of NovoRapid for that sort of moderate diet.

As regards testing for ketones, the general guidance is to test when your levels are persistently 14 or above. So if they are mid teens for several hours, not a spike up to 14 due to a meal which then comes back down when your insulin deals with it. Ketones are only a problem when BG levels are persistently high, so there is no point in testing below 14.

Hope that reassures you a bit. DKA is actually less of a threat than hypos. Insulin is a very powerful medication and can be potentially lethal much quicker than DKA if you have a very serious hypo, although most hypos are moderate and are dealt with safely by yourself once you gain confidence. It is important to always carry hypo treatments with you especially by the bed at night along with your testing kit. I find Jelly Babies are ideal as 3 JBs amounts to 15g carbs which is the recommended treatment for a hypo and they are very simple to carry and stash around the house and in pockets, but you can also buy Glucose/Dextrose tablets (Lift are a brand name and come in handy tubes) and some people use small cartons of orange juice or small cans of full sugar cola etc. The important thing is to be prepared because a hypo will hit you when you least expect it, especially in these early days of diagnosis.

 

[Bruce Stephens]

Have you had any downsides to the CGM? I'm an information junkie so that side appeals. Presumably I pay for it but that's OK with me

Since April last year the guidelines say that everyone with type 1 should be offered a CGM, so you should not need to pay for one. (You might choose to buy them if you find some particular reason for wanting one the NHS is unwilling to pay for.)

Some people find CGMs more confusing (there's a lag between blood glucose and interstitial glucose and all our measuring tools have limited accuracy) because they ordinarily give different readings to test strips. (Quite often two test strips (with two drops of blood) will also give different readings, but we tend not to test twice in that way.) Some people find the increase in information just too much (they prefer having readings just when they want to make the decisions). Some find the (optional) alarms bothersome. I think some who've been dealing with the condition for a long time just don't want to change.

Having said all that, I think over 80% of people in England with type 1 are prescribed something (mostly Libre 2) so it's a minority that really don't want them.

 

[everydayupsanddowns]

Hi another new question...
Is there a decent app (apple or android) that would allow me to track glucose readings, meals, insulin, weight?
I've been scribbling manually and occurs to me there must be a better way!

For BG / carbs / dose logging I would always choose mySugr.

The free version is very capable, and there’s a paid version with additional bells and whistles if you wanted those.

One of the things I liked it is that it allowed you to track everything, but also switch off the options that weren’t relevant to you, or didn’t interest you. So the logging screen wasn’t cluttered with irrelevant sections.

It can also act as a bolus calculator if needed. And integrates with some Roche meters which I think allows wireless transfer?

 

[void]

Hi all, proud new owner of a type 1 diagnosis which came atypically late apparently (mid 40s) although I now see from a few posts here that that's not that late compared to some!
I also had the fun of discovering what ketoacidosis means and spent a while with an IV hook up to get that straightened out. So lots to come to terms with in fairly short order!
To be fair I feel OK about it all, just a lot a lot a lot of questions brewing. What do hotels think about needles when on holiday, airlines too. I already eat pretty healthily but still need to get used to aligning jabs with meals and so on.
And most recently whether to worry about glucose readings that were all in the 6s and 7s throughout the last 24 hours, only to jump to 11 just before bed. Do I need to stick in more to deal with it or expect it to drop?
Just a lot of experience I don't yet have I suppose
Anyway, hi all and good to see that this is an active forum. Hope to hear a bit and maybe one day I'll be able to offer a bit of advice too

I keep all of my ongoing db stuff in one of these:

Taxi Driver Super Soft Leather Bag with Wrist Strap and Multiple Pockets in Black : Amazon.co.uk: Fashion

Free delivery and returns on eligible orders of £20 or more. Buy Taxi Driver Super Soft Leather Bag with Wrist Strap and Multiple Pockets in Black at Amazon Fashion.

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I use an old plastic vitamin container to keep sharps in, and decant those from there into the proper sharps bin. I seriously doubt a hotel anywhere would understand disposal of sharps, at all.

Good luck

 

[Lucyr]

Not a user myself but quite a lot of people use Nutracheck, some apps are free but some you have to pay for.

You can’t record blood sugars in nutracheck it’s a calorie and carb counting app not a diabetes one.

If you want to record blood sugars then look at something like the MySugr app or the mylife bolus calculator app

 

[Mumpie_olgran]

I keep all of my ongoing db stuff in one of these:

Taxi Driver Super Soft Leather Bag with Wrist Strap and Multiple Pockets in Black : Amazon.co.uk: Fashion

Free delivery and returns on eligible orders of £20 or more. Buy Taxi Driver Super Soft Leather Bag with Wrist Strap and Multiple Pockets in Black at Amazon Fashion.

www.amazon.co.uk

I use an old plastic vitamin container to keep sharps in, and decant those from there into the proper sharps bin. I seriously doubt a hotel anywhere would understand disposal of sharps, at all.

Good luck

Looks great actually, thank you. I'm pretty organised but like the look of something to keep it all in one place

 

[Lucyr]

Looks great actually, thank you. I'm pretty organised but like the look of something to keep it all in one place

I use a pencil case

 

[Mumpie_olgran]

If you.get a CGM, the app allows you to enter notes such as meals and insulin ... and probably weight.
This would keep it all with your blood sugar readings so no need to record them again.
Whilst you are waiting for your DSM to get in touch, you could register for the free Libre trial on their website.
There is a lot of discussion about the "best" CGM but we are all different. Personally, I found the Dexcom app incredibly basic (and supported on far less phones) and the readings less accurate than the Libre. So, don't feel disheartened if your clinic does not prescribe the Dexcom - it is not the best for all of us.

Thanks Helli and TDM, in all the waves of emotion that I seem to have been through, I can add some real level of scientific interest as to how I'm impacted by different carbs, timings, exercise etc so I'm actually quite looking forward to a CGM

Next bit of research might be into closed loop systems to see how much of this "fun" I can outsource!

 

[Mumpie_olgran]

A little caution is completely understandable! Especially after what you’ve been through.

In the long run you’ll learn to fit diabetes into your life, rather than your life having to fit around your diabetes. Some of this will be making compromises, and establishing a level of carb intake that you find gives you fairly predictable results (I find moderate carb helps me with this personally), but you should never feel limited. You choose to eat the way that suits you, and then use the tools you have to manage that. 🙂

Pleased to report a pretty normal diet today. Still lowish on carbs but not to paranoid levels. BS a couple of ticks higher all day which gives me some ammo to talk to the nurses about...

 

[Bruce Stephens]

Next bit of research might be into closed loop systems to see how much of this "fun" I can outsource!

The problem there is the pump. We should all be offered a CGM, but pumps are still rather restricted (because they're much more expensive than insulin pens). So ~80% of people with type 1 use a CGM, but ~21% use a pump.

NICE recently published draft guidance for public response, so it's worth reading and (if you have comments) commenting: https://www.nice.org.uk/guidance/indevelopment/gid-ta10845/consultation/html-content

The expectation is that if the draft were implemented unchanged about ~25% might satisfy the criteria.