A week in to diagnosis

[TashT1]

Hi so I was diagnosed a with Type 1 (probably) a week ago, still waiting on antibody results but type 1 seems likely. I went from a phone call from my practice nurse at midday to home from the hospital with an insulin regime by tea time, I'm thankful for the quick set up and consistent follow up from the hospital but my head is still spinning.

I've since found out my hba1c is 97, my bg is fluctuating between 10-18 after being moved onto Lantus (20 units) in the morning and Novorapid at each meal (10-12 units). After lurking on the forum for a few days I think I'm quite lucky to have been given a Freestyle Libra straight away, but I think this is because my bg was between 20 - 30 to start with. I've been told not to worry about my diet too much right now but I can see how this will become an issue soon. I'm a researcher, I like to know as much as I can about things, especially about my health and I like to be proactive so I'm tempted to run before I can walk.

I have two main questions that I'm struggling with right now:
1. At what point does a high hba1c start to become a problem? I've read that it should be around 48 and a high level leads to complications but should it be concerning after months? years? decades? (Looking back I had symptoms for 6 months)
2. Should I start learning about carb counting and start cutting down off my own back? or just chill and wait for my nurse to instigate the change?

I've been told not to worry too much about my bg still being high, they want it to come down slowly and I'm fine with that because I'm terrified of having a hypo. If anyone has some advice in the meantime that would be great.

Other bio facts: I'm 35, no family history of T1, 2 grandparents have T2 but thought to be caused by aging, I have another rare autoimmune disease, I'm a health services researcher and just completed yr1 of my PhD and I have 4 kids.

 

[ert]

Welcome. You've had a tough week.
The NICE guideline for type 1 diabetes advises an HbA1c target of 7.5% (59 mmol/mol) to minimise the risk of microvascular disease and macrovascular disease. The complications timeline is down to the individual. Sometimes complications are more usual in type 2's who can go undiagnosed for decades.
If you chill and let your insulin begin to work, your vision changes won't be so dramatic. When you have been running high blood sugars for months, your lens in your eyes will be swollen and will take a few weeks to change back to normal shape after your blood sugars return to normal. Also, if you cut back on your carbohydrates, you'd have to alter your insulin dosing, which will be complicated to calculate because your blood sugars are dropping. So all in good time.

 

[urbanracer]

Hi there @TashT1

Welcome to the forums.

In between raising 4 kids, studying for a PhD and worrying about 2 grandparents, you could always 'practice' the carb counting. It's not like it's wasted effort, it will be useful later.

When I started carb counting, I was surprised to learn that I was eating much less than the government's recommended intake. You never stop learning with diabetes.

 

[Daibell]

Hi there @TashT1

Welcome to the forums.

In between raising 4 kids, studying for a PhD and worrying about 2 grandparents, you could always 'practice' the carb counting. It's not like it's wasted effort, it will be useful later.

When I started carb counting, I was surprised to learn that I was eating much less than the government's recommended intake. You never stop learning with diabetes.

That's because the Government's recommended intake is why so many are obese.

 

[EllieM]

That's because the Government's recommended intake is why so many are obese.

And so many become T2 diabetic and obese as a result.....

Back on topic

I've been told not to worry too much about my bg still being high, they want it to come down slowly and I'm fine with that because I'm terrified of having a hypo. If anyone has some advice in the meantime that would be great.

Hypos are unfortunately something that T1s have to get used to. Once you've had your first one it should be less scary, as most people have excellent warning symptoms. There are add-ons to the libre that can turn it into a cgm (basically add a transmitter so that it can send blood sugar warnings to your phone if you start to go low), and I strongly recommend that your family members be educated about hypos so that they can rescue you should you need help. Personally, I always told work colleagues and friends as well, but that's entirely up to you. Just make sure to have something sugary on hand (glucose tablets, jelly babies etc etc).

1. At what point does a high hba1c start to become a problem? I've read that it should be around 48 and a high level leads to complications but should it be concerning after months? years? decades? (Looking back I had symptoms for 6 months)

Diabetes has been treatable with insulin for 100 years, while glucometers have been around for 40ish years and cgms such as the libre for less than 10. There are a lot of diabetics out there (I'm one) who've been diabetic for 50, 60, 70 years or more and you can bet that most of them won't have had government recommended hba1cs for all that time. Your body won't have been helped by 6 months of high hba1c but it's very unlikely to have done any permanent damage. Also, many diabetic issues can be put into remission or reversed by just improving your bg levels, so in your position I wouldn't worry at all about your undiagnosed period, but concentrate on gradually getting it under control. A commonly said statement about T1 is that it is a marathon not a sprint. New T1s have excellent prospects, particularly if they are numerate and willing to apply that numeracy to their own illness. (I'm guessing as a researcher you'll have no problems with this.)

Good luck and welcome to the forums.

 

[copilost]

learning about carb counting

I'm T2 so no advice really. Would say, however, yes learn about carb counting it will be useful and it's a good place to start with regard to the schools of thinking around diabetes and carbs. You'll find there's a lively debate going on! I think you'll appreciate Jason Fung's thoughts and writing. Also I find it useful to think about bg in two ways: firstly mean readings and secondly fluctuations. The aim is to have a low(er) mean but to achieve this without spikes and troughs.
Good luck (sorry you're here because who wants diabetes! but it is a great site)

 

[TashT1]

Thank you for the warm welcome and advice, it is much appreciated.

It is reassuring to hear that complications can be reduced/ reversed as that isn’t really dealt with in the literature. But it is something that I can take as it comes and not be too focused on right now.

Thanks for the recommendation of Jason Fung, I’ll look him up. The only advice I was given was to eat a bit less carbs than I normally would so I’ve dropped the packet of crisps with lunch & eat a smaller portion of pasta or potatoes but I definitely prefer to have more defined boundaries. I like learning about new things so this should be ‘fun’.

Are there any go to resources for explaining hypos to kids? I’ve been looking but not found anything suitable. My eldest is 17 & we’ve discussed what to do in an emergency, jelly babies are strategically deployed around the house but as more lockdown restrictions are lifted he won’t always be home & it’ll just be me & the younger kids aged 10, 9 & 7.

My 9yr old is probably the most likely to take charge if anything happens, he’s the most sensitive to what’s happening with other people. But I’m not 100% sure how to explain it to him.

 

[Fairygodmother]

Hi, and welcome to the T1 world @TashT1.
When telling children about hypos, I suppose it all depends on the child who you’re explaining them to.
If your children are interested in how the body works you might like to tell them that we need glucose to provide the power that keeps our brains, muscles and nerves working properly, so if you’ve not got enough of it our bodies won’t work properly and we might be slow, not speaking well, not making sense, doing silly things, maybe sweating a bit or even a bit cross or staring into space. If they see you like that, they should bring you a some jelly babies and then in a little while you’ll be ok again. They shouldn’t be frightened, just go and get the jelly babies.
It’s important too, to tell them that your jelly babies need to be left alone, but their own treats are for them. I know they’re of an age to understand, but sometimes jelly babies can be tempting.
Another couple of books that some people have enjoyed and found interesting and helpful are ‘Think Like a Pancreas’ by Gary Scheiner and later, when your body’s adjusted to having lower blood sugars after the time of highs, and you’ve got an insulin to carb ratio sorted, ‘Sugar Surfing‘ by Stephen Ponder’s quite a good one. Ponder’s book is really based on his own way of adjusting insulin while using a pump but it’s interesting.
If you’re keeping a record of the carbohydrate in what you’re eating, and your blood sugars before you eat and two to three hours after you eat, then you might also find Carbs and Cals useful. The record you keep will help to set your own insulin to carb ratio when you begin to run the beast for yourself. However, I expect the team who diagnosed you will want you to wait until the early adjustments have taken place before that happens.
As the others have said, it takes a lot of high blood sugar time to create problems, and many of us who’ve had it for a long time probably had no idea what our blood sugars were for the early years after diagnosis. I was diagnosed 50 years ago.
Back in the days when a pee test was the only kit, it was very hard to see what was happening in real time. You’re really really lucky to begin your T1 life with a Libre!

 

[Fairygodmother]

Oh yes, I’ve just thought of another thing @TashT1. Some of us use a MiaoMiao (you can google it) to send the result from the Libre to either an app on a smartphone, or a watch, and it allows us to set alarms for when our blood sugars go over or fall under a range that we set. They’re attached to the Libre.
This is probably also for the future, when you’ve gone through the early adjustments; however, the prospect of something like this in the future may well stem your worries about hypos and hypers. I hope so.
It’s another wonderful modern development that I’d not have dreamed was possible as a reality when I was first diagnosed.
In the meantime, congratulations on getting your blood sugars down.

 

[TashT1]

Thanks @Fairygodmother

I’d best make hypos a conversation for this afternoon. I’ll check out the MiaoMiao & books too.

It’s reassuring to know that I’m doing the right thing keeping track of carbs & checking the libra before & 2hrs after food.