• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

T1- newly diagnosed Day 6 on insulin

A

Alex1911

Newbie
Messages
4
Hello there,

I'm 46 year-old and was diagnosed with Type 1, mid February using the H1abc test. It seems that I've been diabetic for some years, potentially decades, but I'm always been super active and on keto diet so managed to be get by apparently. T1 runs in the family so I was not too surprised about the diagnostic given my symptoms.

The consultant seemed quite baffled which was not very reassuring, and after a discussion with the Diabetes Nurse, they decided to put me on insulin- both Levemir (long) and Novo rapid (rapid). I was finally given a contour plus meter. I was told to inject the long twice a day- 6 doses each time and the fast either 2 or 4 depending how much above 8 I am.

I'm quite shocked that this was the extent of the instructions I received: pretty much off you go. I have tons of questions
- how come my fingers hurt so much now when pricking them and it was fine at the start
- I also feel like if I have a bruise where I have been injecting the last 2 times despite changing locations every time
- what happened if I am below 8 before a meal? E:g 6, how much would 10 gr of carbs brings me up to?
- should I take Levemir before bed if I am about 5-6- will it drop me too low during the night
- how can I wake up with sugar levels greater than when I went to bed: and no I did not raid the fridge in the middle of the night
- why do I still have pins and needles even when I am within range, same with the blurry vision
- I travel a lot internationally for work: what's the logistics now snd also eat out quite often: how do I manage that?
- should I have a ketone reader? My highest has been 15
- what about going back to the gym?
- would my sugar levels be impacted by illness or even my menstrual cycle?


After 3 days of fingers pricking about 12-15 times a day, I bit the bullet and order 2 freestyle libre sensors despite the cost so I can at least track the directions of my levels- I still test my blood but less often which is giving my fingers a nice reprieve.

I don't think I am managing too badly, but staggered that there is no follow up; even a phone call from a nurse a couple of days in to check how one is doing and that would give a chance to ask questions?
I'm putting a brave face and pretending that everything is as usual especially at work but really feeling downbeat and isolated, not knowing where to turn to.

Finally, I've got a BUPA cover through work as anyone got any experience with them- do they provide support with specialists, do they pay for the Libre sensors, etc...

Thanks a million for listening

Alex
 
Hi @Alex1911 and welcome to the club.

It is always a shock to be diagnosed with a chronic condition with a lot to take on board but things do get better.
I strongly recommend chasing up with the consultant for a follow up. It sounds as you are on fixed dose but that should change to make things more flexible for you.

It is not surprising you have some questions to ask - keep them coming. But to start with I will provide my answers to your first lot.
Please bear in mind we are all different and I have no medical qualifications ... just nearly 20 years of experience of Type 1

- how come my fingers hurt so much now when pricking them and it was fine at the start
I don't know why your fingers hurt but you may want to look at your technique. Unfortunately, we are never taught how to prick our fingers but there are some tips
- make sure you have the lancet depth adjusted so it is just deep enough to get some blood but not too long. Most lancet devices will have a small dial to adjust the depth
- avoid pricking the middle of the padded area of your finger. it is better to prick to the edge of this area as you will not be pressing there when you do things like type.
- "rotate" your fingers - change the finger you prick regularly. I came up with a "finger schedule" to help me remember to change fingers. I use different hands for odd and even dates and then allocate a time of day for each finger. For example, the little finger on my left hand takes all pricks between waking and lunch on 1st/3rd/5th/7th/... of the month.
- Libre is great BUT you need to understand its limitations. I would recommend finger pricking at least once a day to check the Libre is close.

- I also feel like if I have a bruise where I have been injecting the last 2 times despite changing locations every time
You may have injected into a blood vessel which causes a little bruising.
The advice used to be to pinch a bit of fat and inject into that. This advice changed when needles got shorter but as someone without much fat (and as an active gym going you may be the same), I still find it better to pinch and inject into that part.

- what happened if I am below 8 before a meal? E:g 6, how much would 10 gr of carbs brings me up to?
Unfortunately, we are all different and food is different.
The best way to work out what affect 10g of carbs would have on YOU is to try it. When your levels are stable and you have no bolus insulin (NovoRapid) on board (so more than 4 hours after your last injection), eat 10g (or 5g if you want) of fast acting carbs such as Dextrose tablets. Measure your levels again after about 30 minutes.

- should I take Levemir before bed if I am about 5-6- will it drop me too low during the night
YES,
The idea is that the Basal insulin should keep your levels stable.
You should not stop taking this but you may want to have a little bit of carbs (e.g, half a biscuit) to bring your levels up before going to sleep in case they fall during the night.


- how can I wake up with sugar levels greater than when I went to bed: and no I did not raid the fridge in the middle of the night
This is due to something called Dawn Phenomenon.
If you use the Search function at the top right of the page, you will find many many threads on this topic.
Basically, our helpful liver dumps a load of sugar into our blood at the start of the day to give us energy to get going.
Anyone with a healthy pancreas will release insulin to counteract the sugar. Anyone with a defective pancreas will see a ris ein blood sugar levels.

- why do I still have pins and needles even when I am within range, same with the blurry vision
It will take some time for our bodies to adjust to lower levels, especially if you have been at higher levels for some time.
The recommendation is to reduce levels slowly as a fast change could affect small blood vessels such as those in out eyes.
It is not advised to buy expensive glasses during this period as our eyes usually stabilise but a pair of cheap ready readers may help.

- I travel a lot internationally for work: what's the logistics now snd also eat out quite often: how do I manage that?
No problem. I travel a lot internationally (just booked my first long haul since the start of the pandemic).
Take everything you need diabetes-wise in your hand luggage
Carry twice as much as you think you may need
Request a letter from your consultant (GPs tend to charge for this) to say you must carry diabetes equipment with you at all times including needles. It is rare that this is requested but useful to keep with your passport.


- should I have a ketone reader? My highest has been 15
Yes, you should have a ketone meter ... and ketone strips on repeat prescription

- what about going back to the gym?
Yes. You will need to learn how your body reacts to exercise (another example about how we are all different) so take your meter and hypo treatment with you and take it easy to start with.
I go to the gym a few times every week and cycle and hike and climb and ...

- would my sugar levels be impacted by illness or even my menstrual cycle?
Yes. Typically, both will see your levels rising a bit.
You should ask about "Sick Day Rules" when you see or talk to your consultant or DSN.

I appreciate that is a lot of information. Don't expect to understand everything about diabetes on day 1, Or ever.
Don't expect perfection - there are too many things which can affect our levels.
But, diabetes should not stop you doing what you want - it hasn't stopped me and I have given it a few challenges over the years.
 
In Response said:
Hi @Alex1911 and welcome to the club.

It is always a shock to be diagnosed with a chronic condition with a lot to take on board but things do get better.
I strongly recommend chasing up with the consultant for a follow up. It sounds as you are on fixed dose but that should change to make things more flexible for you.

It is not surprising you have some questions to ask - keep them coming. But to start with I will provide my answers to your first lot.
Please bear in mind we are all different and I have no medical qualifications ... just nearly 20 years of experience of Type 1

- how come my fingers hurt so much now when pricking them and it was fine at the start
I don't know why your fingers hurt but you may want to look at your technique. Unfortunately, we are never taught how to prick our fingers but there are some tips
- make sure you have the lancet depth adjusted so it is just deep enough to get some blood but not too long. Most lancet devices will have a small dial to adjust the depth
- avoid pricking the middle of the padded area of your finger. it is better to prick to the edge of this area as you will not be pressing there when you do things like type.
- "rotate" your fingers - change the finger you prick regularly. I came up with a "finger schedule" to help me remember to change fingers. I use different hands for odd and even dates and then allocate a time of day for each finger. For example, the little finger on my left hand takes all pricks between waking and lunch on 1st/3rd/5th/7th/... of the month.
- Libre is great BUT you need to understand its limitations. I would recommend finger pricking at least once a day to check the Libre is close.

- I also feel like if I have a bruise where I have been injecting the last 2 times despite changing locations every time
You may have injected into a blood vessel which causes a little bruising.
The advice used to be to pinch a bit of fat and inject into that. This advice changed when needles got shorter but as someone without much fat (and as an active gym going you may be the same), I still find it better to pinch and inject into that part.

- what happened if I am below 8 before a meal? E:g 6, how much would 10 gr of carbs brings me up to?
Unfortunately, we are all different and food is different.
The best way to work out what affect 10g of carbs would have on YOU is to try it. When your levels are stable and you have no bolus insulin (NovoRapid) on board (so more than 4 hours after your last injection), eat 10g (or 5g if you want) of fast acting carbs such as Dextrose tablets. Measure your levels again after about 30 minutes.

- should I take Levemir before bed if I am about 5-6- will it drop me too low during the night
YES,
The idea is that the Basal insulin should keep your levels stable.
You should not stop taking this but you may want to have a little bit of carbs (e.g, half a biscuit) to bring your levels up before going to sleep in case they fall during the night.


- how can I wake up with sugar levels greater than when I went to bed: and no I did not raid the fridge in the middle of the night
This is due to something called Dawn Phenomenon.
If you use the Search function at the top right of the page, you will find many many threads on this topic.
Basically, our helpful liver dumps a load of sugar into our blood at the start of the day to give us energy to get going.
Anyone with a healthy pancreas will release insulin to counteract the sugar. Anyone with a defective pancreas will see a ris ein blood sugar levels.

- why do I still have pins and needles even when I am within range, same with the blurry vision
It will take some time for our bodies to adjust to lower levels, especially if you have been at higher levels for some time.
The recommendation is to reduce levels slowly as a fast change could affect small blood vessels such as those in out eyes.
It is not advised to buy expensive glasses during this period as our eyes usually stabilise but a pair of cheap ready readers may help.

- I travel a lot internationally for work: what's the logistics now snd also eat out quite often: how do I manage that?
No problem. I travel a lot internationally (just booked my first long haul since the start of the pandemic).
Take everything you need diabetes-wise in your hand luggage
Carry twice as much as you think you may need
Request a letter from your consultant (GPs tend to charge for this) to say you must carry diabetes equipment with you at all times including needles. It is rare that this is requested but useful to keep with your passport.


- should I have a ketone reader? My highest has been 15
Yes, you should have a ketone meter ... and ketone strips on repeat prescription

- what about going back to the gym?
Yes. You will need to learn how your body reacts to exercise (another example about how we are all different) so take your meter and hypo treatment with you and take it easy to start with.
I go to the gym a few times every week and cycle and hike and climb and ...

- would my sugar levels be impacted by illness or even my menstrual cycle?
Yes. Typically, both will see your levels rising a bit.
You should ask about "Sick Day Rules" when you see or talk to your consultant or DSN.

I appreciate that is a lot of information. Don't expect to understand everything about diabetes on day 1, Or ever.
Don't expect perfection - there are too many things which can affect our levels.
But, diabetes should not stop you doing what you want - it hasn't stopped me and I have given it a few challenges over the years.
Click to expand...
You are a god send- thanks so much, this is so insightful but also provides the little hope I need right now- thanks a million- big hug
 
Hi @Alex1911 I'd say your treatment is both shocking, but from my current experience, sadly not unexpected! I had a fight with my diabetes nurse today so I am ready to scrap with anyone due to being left to it!

I would suggest emailing your list of questions to the diabetes team you are dealing with so that they are not caught off guard on a phone call, but asked to be called back as soon as possible with the answers, and then give them 24 hours before calling them if you hear nothing. I strongly believe they need to know what they have not told you!

I am sure you will get most of the answers from the great people on this forum, I was only on insulin for 3 weeks after diagnosis and never got to use my novo rapid as although assumed T1 by my nurse, the hospital disagreed and changed me to Humulin, and by 3 weeks on only 2 x 3 units per day I was taken off and I was regularly in the 4s and eating Quality Street (this was over Christmas and New Year) to stop me freaking out about going too low.

Have they done C-Pep and GAD blood tests to confirm? The C-Pep came back first for me and I was told it confirmed the T2 diagnosis, but then the GAD etc antibodies all came back positive and I am still in limbo land 2 months later - only got to speak to the nurse today as I want to schedule my 3month HbA1c for next week as I am seeing a private consultant at the end of the month and want up to date results (and I'm eager to know) as paying seems to be the only way to speak to someone within 12 months!

Good luck with the 'brave face' - I have done the 'hysterically upset face', then 'brave face', now full on 'angry scowl! Hoping for the 'I've got this' face soon :)
 
Forgot to say - if your HbA1c was really high, you might find your eyesight gets a lot worse before it gets better - I wasn't warned and was reliant on a huge magnifying glass to even see the TV over Christmas and was off work/couldn't drive until the end of January because it took time for everything to settle. Hopefully you will just get a bit of fuzziness, but hopefully being forewarned will stop the panic I had:watching:.
 
In Response said:
Hi @Alex1911 and welcome to the club.

It is always a shock to be diagnosed with a chronic condition with a lot to take on board but things do get better.
I strongly recommend chasing up with the consultant for a follow up. It sounds as you are on fixed dose but that should change to make things more flexible for you.

It is not surprising you have some questions to ask - keep them coming. But to start with I will provide my answers to your first lot.
Please bear in mind we are all different and I have no medical qualifications ... just nearly 20 years of experience of Type 1

- how come my fingers hurt so much now when pricking them and it was fine at the start
I don't know why your fingers hurt but you may want to look at your technique. Unfortunately, we are never taught how to prick our fingers but there are some tips
- make sure you have the lancet depth adjusted so it is just deep enough to get some blood but not too long. Most lancet devices will have a small dial to adjust the depth
- avoid pricking the middle of the padded area of your finger. it is better to prick to the edge of this area as you will not be pressing there when you do things like type.
- "rotate" your fingers - change the finger you prick regularly. I came up with a "finger schedule" to help me remember to change fingers. I use different hands for odd and even dates and then allocate a time of day for each finger. For example, the little finger on my left hand takes all pricks between waking and lunch on 1st/3rd/5th/7th/... of the month.
- Libre is great BUT you need to understand its limitations. I would recommend finger pricking at least once a day to check the Libre is close.

- I also feel like if I have a bruise where I have been injecting the last 2 times despite changing locations every time
You may have injected into a blood vessel which causes a little bruising.
The advice used to be to pinch a bit of fat and inject into that. This advice changed when needles got shorter but as someone without much fat (and as an active gym going you may be the same), I still find it better to pinch and inject into that part.

- what happened if I am below 8 before a meal? E:g 6, how much would 10 gr of carbs brings me up to?
Unfortunately, we are all different and food is different.
The best way to work out what affect 10g of carbs would have on YOU is to try it. When your levels are stable and you have no bolus insulin (NovoRapid) on board (so more than 4 hours after your last injection), eat 10g (or 5g if you want) of fast acting carbs such as Dextrose tablets. Measure your levels again after about 30 minutes.

- should I take Levemir before bed if I am about 5-6- will it drop me too low during the night
YES,
The idea is that the Basal insulin should keep your levels stable.
You should not stop taking this but you may want to have a little bit of carbs (e.g, half a biscuit) to bring your levels up before going to sleep in case they fall during the night.


- how can I wake up with sugar levels greater than when I went to bed: and no I did not raid the fridge in the middle of the night
This is due to something called Dawn Phenomenon.
If you use the Search function at the top right of the page, you will find many many threads on this topic.
Basically, our helpful liver dumps a load of sugar into our blood at the start of the day to give us energy to get going.
Anyone with a healthy pancreas will release insulin to counteract the sugar. Anyone with a defective pancreas will see a ris ein blood sugar levels.

- why do I still have pins and needles even when I am within range, same with the blurry vision
It will take some time for our bodies to adjust to lower levels, especially if you have been at higher levels for some time.
The recommendation is to reduce levels slowly as a fast change could affect small blood vessels such as those in out eyes.
It is not advised to buy expensive glasses during this period as our eyes usually stabilise but a pair of cheap ready readers may help.

- I travel a lot internationally for work: what's the logistics now snd also eat out quite often: how do I manage that?
No problem. I travel a lot internationally (just booked my first long haul since the start of the pandemic).
Take everything you need diabetes-wise in your hand luggage
Carry twice as much as you think you may need
Request a letter from your consultant (GPs tend to charge for this) to say you must carry diabetes equipment with you at all times including needles. It is rare that this is requested but useful to keep with your passport.


- should I have a ketone reader? My highest has been 15
Yes, you should have a ketone meter ... and ketone strips on repeat prescription

- what about going back to the gym?
Yes. You will need to learn how your body reacts to exercise (another example about how we are all different) so take your meter and hypo treatment with you and take it easy to start with.
I go to the gym a few times every week and cycle and hike and climb and ...

- would my sugar levels be impacted by illness or even my menstrual cycle?
Yes. Typically, both will see your levels rising a bit.
You should ask about "Sick Day Rules" when you see or talk to your consultant or DSN.

I appreciate that is a lot of information. Don't expect to understand everything about diabetes on day 1, Or ever.
Don't expect perfection - there are too many things which can affect our levels.
But, diabetes should not stop you doing what you want - it hasn't stopped me and I have given it a few challenges over the years.
Click to expand...
Mrs HJG said:
Forgot to say - if your HbA1c was really high, you might find your eyesight gets a lot worse before it gets better - I wasn't warned and was reliant on a huge magnifying glass to even see the TV over Christmas and was off work/couldn't drive until the end of January because it took time for everything to settle. Hopefully you will just get a bit of fuzziness, but hopefully being forewarned will stop the panic I had:watching:.
Click to expand...

Thanks so much for your prompt reply- waiting for the GAD and C Pep tests to come back to rule out LADA. I was not given any email or phone number but will try to do some digging.

Thanks for all of the tips and good luck as well

Best

Alex
 
You should have been given contact details for your hospital's diabetic specialist nurses at least ! Don't let them get away with this. Complain. The DSNs can get in youch with a consultant/ bring an appointment forward if they think it necessary/ provide information themselves. You should be able to get DSN contact details if you phone the hospital. Other people who are newly-diagnosed will hopefully benefit if you kick up a fuss.

Edited to add:- Good luck. With that lot, you may need it.
 
Last edited:
Back
Top