anxious all the time

[rand55]

I was diagnoised 4 days ago with type 1 and obviously I was crying for a few days but now im coming to terms with it, today I have been given the libre freestyle and I thought I would be relieved a bit more since I didnt have to do the finger thing anymore/as often but I tested the blood sugar from the finger thing and libre at the same time just to see and it showed 10.9 on the finger prick and 15.9 on the libre, this made me really anxious because how can they allow it to be off by this much. I understand there is a 5-15 minute delay so I waited 10 and it was the exact same number.

I havent re measured the finger prick because im kind of scared but also they told me about the carb counting and I done it properly for all meals but basically I done 3 units of novarapid to have some tea and biscuits but then I done all that finger pricking and waiting and then It was about 30-40 minutes later until I ate the food which is not good apperently.

I need help on what to do I think im going to do a finger prick test right now because my eyes are getting blurry and im getting an anxious again because I scanned the thing and it says its 18

 

[In Response]

Libre is great but, as you are finding, it has limitations.
- it can take 48 hours to "bed in" as are bodies are not keen on an alien object inserted in our arms. As a result, readings for the sensor may be off for the first couple of days. I insert my sensors 2 days before activating.
- Libre are most accurate between about 4 and 8. Higher than thus, especially with double figures Libre often over reads

It is frustrating that we are not told about these limitations and have to learn from experience and social media.

If you are unsure, always go by finger pricks. Libre is great at showing patterns and highlighting a need to check to maybe correct

 

[EllieM]

Hi @rand55, welcome to the forums and the club no one wants to join, T1 diabetics.

OK, my first recommendation is to try not to panic.

Two comments about the libre. Firstly, it tends to be inaccurate when your reading is outside normal range and it can also be inaccurate when the sensor has been recently inserted. However, some sensors are inaccurate anyway, so if you find it consistently disagrees with your meter I'd ring Abbott and they'll probably send you a new sensor.

Personally, I'd believe my glucometer over the libre, though I might do a second meter test just to confirm I hadn't messed up the first one.

Do you have a diabetic nurse who you can contact about your care? (You're bound to have lots of queries, specially at the beginning.)

 

[rand55]

Hi @rand55, welcome to the forums and the club no one wants to join, T1 diabetics.

OK, my first recommendation is to try not to panic.

Two comments about the libre. Firstly, it tends to be inaccurate when your reading is outside normal range and it can also be inaccurate when the sensor has been recently inserted. However, some sensors are inaccurate anyway, so if you find it consistently disagrees with your meter I'd ring Abbott and they'll probably send you a new sensor.

Personally, I'd believe my glucometer over the libre, though I might do a second meter test just to confirm I hadn't messed up the first one.

Do you have a diabetic nurse who you can contact about your care? (You're bound to have lots of queries, specially at the beginning.)

Thank you for the reply, yes i do but they are only avaliable during working hours. I have just re tested the finger prick test and the libre and the numbers were 13.8 and 17.9, its just concerning to me because I have not had a hypo yet I dont think the lowest I tested was exactly 4 two days ago by finger prick and I immediately drank a can of coke because Im still scared of it all so if I were to scan and the libre was at 5 and I was actually at like 3.5 then I would be unaware if its just me being nervous or its actual symptons but I can see that you said it is more accurate within the normal range and I should wait 48 hours for it to settle in which I will do.

Also what is your thoughts on me eating my food 40 minutes later after taking the 3 units of novarapid? thanks

 

[EllieM]

Also what is your thoughts on me eating my food 40 minutes later after taking the 3 units of novarapid? thanks

I'd follow your nurse's advice on this though some diabetics do prebolus ie wait 15 minutes after an injection before eating, so as to give the insulin time to work. The reason why you have been told not to wait for a long time is probably that your nurse doesn't want you to go hypo before eating, though since you were starting at a relatively high level this is much less of a risk.

Did you get any symptoms when your blood sugar was 4? Many/most/(all?) of us T1s get hypos, and once you are used to them they are much less scary. Once you recognise the symptoms you'll be able to take some glucose (or whatever) and continue on with your day, but you do need to know what the symptoms are. (And that can vary a bit from person to person.)

 

[becca59]

Welcome @rand55 My personal opinion is that you have been given a little too much to juggle in your first week following diagnosis. Your numbers are bound to be high at the start of your journey and it is important for them to come down gradually, so that your body, and particularly your eyes, adjust to the lower levels. Libre is notoriously unreliable when it has to cope with high levels. I think it is important that you are regularly testing with finger pricks and getting to know how your body feels. Perhaps in a couple of weeks when you are a little more stable and confident Libre can be thrown in too. If it gives a high reading, set a 15 minute alarm then double check with a finger prick. If it is 3 or more mmol different on 3 separate occasions Abbott will replace.
Also do not panic if food and insulin don’t quite match at the moment. Things may need to be adjusted for quite a while til the correct ratios are matched. And very importantly you need to be in regular contact with your DN to help you achieve this. Stay calm, you will get there but unfortunately it will be a marathon and not a sprint to achieve this.

 

[Hertfordshiremum]

Thank you for the reply, yes i do but they are only avaliable during working hours. I have just re tested the finger prick test and the libre and the numbers were 13.8 and 17.9, its just concerning to me because I have not had a hypo yet I dont think the lowest I tested was exactly 4 two days ago by finger prick and I immediately drank a can of coke because Im still scared of it all so if I were to scan and the libre was at 5 and I was actually at like 3.5 then I would be unaware if its just me being nervous or its actual symptons but I can see that you said it is more accurate within the normal range and I should wait 48 hours for it to settle in which I will do.

Also what is your thoughts on me eating my food 40 minutes later after taking the 3 units of novarapid? thanks

Hi rand55

I think most of us had many different issues at the beginning, it takes time for your body to adjust and settle down and the honeymoon phase means there are always some days that just don’t make sense at all. Regarding the Novorapid we cannot comment on doses etc however your diabetic nurse should be, so keep emailing her or phoning. It very much depends on the person, what you are eating, how quickly your insulin effects you. This is different for everyone. Novorapid takes 1.5 hours to peak and lasts for about 4hrs so it depends how quickly it effects you. Is it working for you? is the real question.
If you have been given a Libre, great! I put mine on, only activate it (first scan) after it’s been on a little over 24hrs, it’s more accurate that way. When I have started to use it I do a finger prick to check accuracy. Mostly it’s less than 1mmol out but as long as I know it’s a fraction lower or higher then that’s fine. Unless I am between 4 & 9 especially if you are going up or down rapidly it often can’t keep up so I definitely finger prick to check in this instance. When you come back in range it will be more accurate again, If you are feeling a bit shaky, double check with a finger prick. Do you have a packet of jelly babies handy? One jelly baby usually raises most people by a couple of mmol, as you have a Libre try one when you are in range and have not eaten anything else recently and see what effect it has on you. You will need to wait 15minutes then check your level. A lot of diabetic nurses recommend them for hypo treatment. It’s so daunting at the beginning but you will get to know what works for you. Try not to worry, you will get the hang of this, it’s complicated so give yourself some time.

 

[Juicyj]

Hey @rand55 Good job you found the forum - you will get great advice from other members here

Just take it easy on yourself, I think when we are diagnosed we are bombarded with information overload, it takes time to absorb this and learn how the body reacts, am sure you will hear it' said alot but it's a marathon not a sprint so take it day by day, the anxiety will lessen as your knowledge/experience increases but take time to talk about your feelings and don't bottle things up.

Always someone around here if you have any queries just shout.

 

[Bubbleblower]

The first day 2% of all readings are more than 40% off and that gets more if you are a type 1 and/or have low BMI, especially if you also exercise and have good control.
In my experience most deviations, like 90%, happen in the morning and some in the evening.
After a few days the FSL gets more reliable, but in the end it gets worse again;

“The mean and median MARD for FreeStyle Libre sensors aged 0-1 days were 14.5% and 11.2%, respectively, and for sensors aged 13-14 days were 14.7% and 11.2%, respectively, but for sensors aged 5-7 days were 7.8% and 6.6%, respectively”

According to Abbott deviations are biggest in the 81-180 (4.5-10) range:

 

[LionChild]

I was diagnoised 4 days ago with type 1 and obviously I was crying for a few days but now im coming to terms with it, today I have been given the libre freestyle and I thought I would be relieved a bit more since I didnt have to do the finger thing anymore/as often but I tested the blood sugar from the finger thing and libre at the same time just to see and it showed 10.9 on the finger prick and 15.9 on the libre, this made me really anxious because how can they allow it to be off by this much. I understand there is a 5-15 minute delay so I waited 10 and it was the exact same number.

I haven't re measured the finger prick because im kind of scared but also they told me about the carb counting and I done it properly for all meals but basically I done 3 units of novarapid to have some tea and biscuits but then I done all that finger pricking and waiting and then It was about 30-40 minutes later until I ate the food which is not good apperently.

I need help on what to do I think im going to do a finger prick test right now because my eyes are getting blurry and im getting an anxious again because I scanned the thing and it says its 18

I also struggle with high anxiety levels!
It's interesting that Libre read higher than your finger prick. Mine is usually the other way around.
I'd agree with much that has already been said by way of response to your post, but I would add that first of all, both 10.9 and 15.9 are rather high readings, so they do need to come down.
Since you are newly diagnosed, have you thought about starting on a low carb diet, until you get more used to the fact of your type 1 new diagnosis? What this means for me is salads ---on my plate I have about a third of a pepper, two baby tomatoes, some red onion, edamame beans, a selection of different nuts, about 6 blueberries, a little bit of cheddar cheese, half a breast of chicken, (or half a leg), or a boiled egg. You might also want some spinach or lettuce. With this I usually have 1 unit of novorapid. I have a drink of water with this meal too.
We do not respond the same way to insulin or to carbs and so you will have to experiment a bit, but I am thinking that if you are very anxious (as I am too) about your new status as a type 1, then if you start with this kind of a meal, you cannot go far wrong. Then later you can experiment with other meals. I allow myself two or three ready meals each week and with those usually I have around 6 units, but that is just how I manage my glucose....
When my blood glucose in under 6, I might allow myself a cup of tea with some milk in, or coffee. Usually this means only at the most two cups of tea a day. But my goal is to keep my Blood Glucose to between 3.9 and 9. Sometimes I go over but rarely over 10 mmoles.
I hope that helps as a suggestion to kick off at least?

 

[Antje77]

I would add that first of all, both 10.9 and 15.9 are rather high readings, so they do need to come down.

At 4 days in, getting numbers down should be a slow thing, those are very nice numbers to work on to find the right doses! Not so high they impose an immediate risk, and not so low you're close to hypo levels.

Since you are newly diagnosed, have you thought about starting on a low carb diet, until you get more used to the fact of your type 1 new diagnosis?

While choosing lower carb can be helpful in T1, depending on preferences, at this point it's important to start to get an understanding of how insulin affects you, not only for yourself, @rand55 , but for your team as well. Cutting out most carbs won't help doing this, and it's definitely not something to do without consulting your team, as it can mean you'd need to adjust your insulin doses rather drastically.
Keeping a log on both food and insulin will be very helpful in finding and adjusting your doses!

I need help on what to do I think im going to do a finger prick test right now because my eyes are getting blurry and im getting an anxious again because I scanned the thing and it says its 18

It's only been a couple of days, please take it easy!
This is a marathon, not a sprint, and it's not at all expected to see numbers below 10 at this point!
It's to be expected to see high numbers because you're still working on finding the right dose for you, which will take weeks at the very least.
They start you out on relatively low doses and build from there to make sure you don't go hypo. The amount of insulin we need is very different from person to person, some of us need only 1 unit for 20 grams of carbs, others need 10 units for 10 grams of carbs, the only way to find out what it is for you is by trying and keeping notes, which takes time.

Take a deep breath, take your time, and please be aware a large part of this forum is based on people with T2, which is a whole different ball game!

 

[EllieM]

I second @Antje77 's post. As a new T1, particularly one with fast onset childhood type T1 rather than the slower onset that the older LADA folk on the forum tend to get, (I appreciate you're an adult @rand55 but T1 can develop much more slowly among older adults, and often they spend years misdiagnosed as T2 before they get a LADA diagnosis), the figures aren't that important at the moment. Your records will allow your DN to calculate how much insulin you need, and they will increase these amounts gradually so that you drop slowly back to normal levels, without any major hypos on the way.

Though many/some T1s eat low carb (particularly those older ones like me with weight issues) for a new young T1 who has possibly just come out of a bout of diabetic ketoacidosis (a common method of diagnosis for new T1s) the most important thing is to have enough insulin to avoid a DKA, and find out your insulin needs and ratios. Follow your nurse's advice on diet for now.

And the good news is that the treatment for young T1s is getting better all the time. Cgms and insulin pumps make for a very bright future. While I've long since given up on a "cure" for me , I think the treatment may become almost as good as a cure, and for younger T1s such as yourself I wouldn't rule it out.

 

[VashtiB]

hi @rand55 - I hope you are feeling a bit less anxious. I'm a type 2 so will just stick with saying a diagnosis like type 1 diabetes is big. It will take you some time to adjust. The good news is that you have found this forum and can already see how ready people are to help.

Good luck on your journey- be kind to yourself and read around on the forum in particular the type 1 threads. Feel free to post anytime. I have certainly received a lot of help and support here.

Welcome and good luck.

 

[LionChild]

I was diagnoised 4 days ago with type 1 and obviously I was crying for a few days but now im coming to terms with it, today I have been given the libre freestyle and I thought I would be relieved a bit more since I didnt have to do the finger thing anymore/as often but I tested the blood sugar from the finger thing and libre at the same time just to see and it showed 10.9 on the finger prick and 15.9 on the libre, this made me really anxious because how can they allow it to be off by this much. I understand there is a 5-15 minute delay so I waited 10 and it was the exact same number.

I havent re measured the finger prick because im kind of scared but also they told me about the carb counting and I done it properly for all meals but basically I done 3 units of novarapid to have some tea and biscuits but then I done all that finger pricking and waiting and then It was about 30-40 minutes later until I ate the food which is not good apperently.

I need help on what to do I think im going to do a finger prick test right now because my eyes are getting blurry and im getting an anxious again because I scanned the thing and it says its 18

I can only say what works for me----- and given your high anxiety levels, it seems to me that you might respond similarly to the kind of approach I have suggested, gradually including more carbs and even more glycaemic carbs as you feel more comfortable. See what works for you, though, each of us has to decide, and no one knows all the answers.
Good luck to you!