Hello

[Mike3]

Hi All,
I’ve found the help and advice on this forum super useful so wanted to register and say hi. I’ve been taking insulin for about 4 weeks now, first few weeks felt easy (as I was eased into it) but now things have become a little more complicated, confusing, frustrating, and sometimes frightening.
Be good to chat with other people with type 1 and hopefully have a few laughs along the way.
Mike

 

[Ieva DUK]

Hi Mike, a very warm welcome, and thanks for introducing yourself!

It’s great to hear the forum’s already been helpful to you, and I’m really glad you’ve decided to join in. I hope it continues to be a place where you can not only get advice, but also feel a bit lighter about things - we’re big believers that a few shared laughs can go a long way.

Starting insulin can definitely feel like a whirlwind - those first few weeks often come with a steep learning curve, and it's completely normal to feel a mix of emotions as things shift from “eased in” to the more real-world juggle. You’re not alone in that at all.

There are lots of folks here living with type 1, and it’s a really open and understanding space to ask questions, share frustrations, or just connect (and yes - laughs are very much welcome too!).

If you ever feel comfortable, feel free to share more about your experience so far. And if you’ve got any questions, rants, or even small wins — this is the place for all of it.

Looking forward to seeing you around!

 

[rebrascora]

Hi Mike and welcome.

Have you been diagnosed long? Just wondering if you might have been another one of us who was initially diagnosed as Type 2 and then regraded and started on insulin.
Which insulins do you have and are you carb counting or using fixed doses?

Do you have a Constant Glucose Monitor (CGM) like Libre or Dexcom or are you just finger pricking at the moment?

Yes, it can be frustrating and occasionally scary but every once in a while you also get a fist in the air moment when despite the odds being against you, you get it right. Treasure those moments and come here and boast about them because they deserve acknowledgement. Mostly once you get a bit of experience under your belt you start to relax a bit and realise that near enough is near enough and you can manage most things that it throws at you reasonably well, but it does unfortunately take time to build up that experience and 4 weeks in is still very much on the steepest part of the learning curve. Hang in there, it gets easier.
The analogy of learning to drive a car is sometimes used as when you first learn, you have to think about every single aspect of driving like which gear you are in and where the indicators are and how you work the windscreen wipers and even which pedal is which and looking in the mirror before you indicate and loads of other stuff, but gradually that all gets absorbed into muscle memory and you do most of it on autopilot and just have to think about which road you need to take to get to where you want to go but your hands and feet do all the other stuff without you consciously having to think about it. Managing your diabetes will gradually become like that and you will learn to do a lot of the stuff on autopilot!

Anyway, we are here to support you in any way we can. We all know how overwhelming it is at first but you have come to the right place for moral support and practical experience. If you have a specific questions, please just ask, no matter how basic you feel they might be.... or how complicated. Don't be surprised if you get more than one different answer because diabetes is individual, but they will give you an idea of what to try to help fix your issue. Then you just have to experiment to see what works for you!

 

[Mike3]

Hi Mike and welcome.

Have you been diagnosed long? Just wondering if you might have been another one of us who was initially diagnosed as Type 2 and then regraded and started on insulin.
Which insulins do you have and are you carb counting or using fixed doses?

Do you have a Constant Glucose Monitor (CGM) like Libre or Dexcom or are you just finger pricking at the moment?

Yes, it can be frustrating and occasionally scary but every once in a while you also get a fist in the air moment when despite the odds being against you, you get it right. Treasure those moments and come here and boast about them because they deserve acknowledgement. Mostly once you get a bit of experience under your belt you start to relax a bit and realise that near enough is near enough and you can manage most things that it throws at you reasonably well, but it does unfortunately take time to build up that experience and 4 weeks in is still very much on the steepest part of the learning curve. Hang in there, it gets easier.
The analogy of learning to drive a car is sometimes used as when you first learn, you have to think about every single aspect of driving like which gear you are in and where the indicators are and how you work the windscreen wipers and even which pedal is which and looking in the mirror before you indicate and loads of other stuff, but gradually that all gets absorbed into muscle memory and you do most of it on autopilot and just have to think about which road you need to take to get to where you want to go but your hands and feet do all the other stuff without you consciously having to think about it. Managing your diabetes will gradually become like that and you will learn to do a lot of the stuff on autopilot!

Anyway, we are here to support you in any way we can. We all know how overwhelming it is at first but you have come to the right place for moral support and practical experience. If you have a specific questions, please just ask, no matter how basic you feel they might be.... or how complicated. Don't be surprised if you get more than one different answer because diabetes is individual, but they will give you an idea of what to try to help fix your issue. Then you just have to experiment to see what works for you!

I was originally treated with Gliclizide and when I didn’t improve my GP just kept increasing the dose until they hit the maximum. They then prescribed Metformin. Took a while for them to reach out for advice from the diabetes team at my local hospital who said to send me in straight away.
I’m on Lantus and NovoRapid and I have a Libre2 which I’ve discovered is not always accurate.
I’m learning to count carbs but it’s a bit hit and miss at the moment.
Thanks for the analogy, reassuring to know it’ll get easier. 🙂

 

[rebrascora]

Good that you have a CGM but it might be helpful if you read our list of limitation and precautions of CGMs which I will link below...

H

Thread 'CGM limitations and precautions'

Sep 8, 2023

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.

If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...

• helli
• Replies: 23
• Forum: Pumping and Technology

• 
• 
• 

In particular it is important to be aware that compressing your arm with the sensor on for any significant length of time will cause what we call a "compression low" which is a false low reading and this is most likely to happen at night by lying on or rolling onto that arm in your sleep. It is therefore advised to always double check lows with a finger prick unless you feel obviously hypo. The other main thing is to always check recovery from a hypo with a finger prick and NOT rely on Libre after treating a hypo. This is because Libre will almost always show your levels continuing to fall 15 mins after taking a hypo treatment whereas a finger prick will usually show you have recovered. The finger prick is by far the most reliable assessment of the situation at this time and if you don't finger prick and rely on Libre you will almost always panic more and also likely overtreat your hypo resulting in your levels going far too high an hour or so later.
The rule of 15 for hypo treatment is really helpful for developing a routine for dealing with hypos. This is where, once you have confirmed that you are hypo, you eat/drink 15g of fast acting carbs and then retest after 15 mins (with a finger prick) If your levels are above 4 at that time then you might consider having a further 5-10g of slower acting carbs like a digestive biscuit to stabilise your levels. I find I almost never need the slower acting back up carbs and if I have them my levels will go to high but that is the standard advice and then as you gain experience you adjust to to what works for you. 15g of fast acting carbs might be 4-5glucose tablets or 3 jelly babies or a small can of full sugar cola or a small carton of orange or other fruit juice. Keeping hypo treatments to hand especially when you leave the house but also by the bed and I also keep some in the bathroom as a hot shower after exercise can drop your levels pretty quickly and not ideal wandering around the house half asleep or wet and naked looking for hypo treatments.
IF at the 15 min mark your levels are not above 4, then you have another 15g of fast acting carbs and wait another 15 mins to retest with a finger prick and rinse and repeat. Once above 4 then consider the 5-10g of slower carbs.

Hopefully you had already been given that info about treating hypos but I wasn't and nobody even told me how many glucose tablets to take. I assumed it would just be one, so just want to make sure you have that info. They are really scary at first but once you have dealt with a few you realise that you don't need to panic and your chosen hypo treatment will work...... but just ignore Libre whilst the treatment is working.

Oh one more thing.... your hypo treatment will absorb through the cells inside your mouth quicker than your stomach and are closer to your brain so the glucose will get to where it is needed faster if you chew whatever solid treatment you use really well and swish it around your mouth and obviously the same for liquid treatment apart from the chewing obviously!
It is instinctive to chew a couple of times and then swallow thinking you need to get it into your stomach ASAP, but breaking it down really well in your mouth so that it can absorb though the cells there is more effective. This is also really important if you have a vomiting sickness and can't keep anything down but find yourself low/hypo. Just holding it in your mouth can save the day!

 

[mashedupmatt]

Hi @Mike3 and welcome to the forum - sorry you've had to join us (but in a nice way!) - loads of people here were initially given oral medication in the hope that they will work, only to eventually get a proper diagnosis and move onto insulin - I'm assuming you've now been diagnosed Type 1? Did they confirm this with blood tests? (Antibody and C-Peptide tests are the gold standard at the moment) - CGMs are great but do be aware of their limitations (as @rebrascora has kindly posted) and it is always best to confirm with a finger prick - 4 weeks is a very short period of time to get the insulin doses right as well as timings but I promise it does get easier - please fire away with any questions you may have however trivial they may seem - a lot of us have "been there" and genuinely want to help because we all "get it" - glad you have found us 🙂

 

[HayleyR]

Hi @Mike3 and a very warm welcome from me too 🙂 . There is certainly a lot to take on board but it does get easier. I promise. Please just ask away as we're here to support you and each other...

 

[everydayupsanddowns]

Welcome to the forum @Mike3

Glad you have found us!

 

[Mike3]

Hi @Mike3 and welcome to the forum - sorry you've had to join us (but in a nice way!) - loads of people here were initially given oral medication in the hope that they will work, only to eventually get a proper diagnosis and move onto insulin - I'm assuming you've now been diagnosed Type 1? Did they confirm this with blood tests? (Antibody and C-Peptide tests are the gold standard at the moment) - CGMs are great but do be aware of their limitations (as @rebrascora has kindly posted) and it is always best to confirm with a finger prick - 4 weeks is a very short period of time to get the insulin doses right as well as timings but I promise it does get easier - please fire away with any questions you may have however trivial they may seem - a lot of us have "been there" and genuinely want to help because we all "get it" - glad you have found us 🙂

Hi @mashedupmatt, I’m being treated as type 1. I’ve been told C-peptide and symptoms indicate type 1, possibly LADA, but I’m still waiting for the GAD result. Still producing some insulin, which I am finding challenging - it’s hard to accurately dose as my ICR isn’t straight forward to calculate. Similarly, I’m finding any significant amount of exercise is results in a drop with any amount of insulin, so will be reaching out for some advice on that (current plan is to not have any and see what happens).
Thanks for your message, and appreciate the assurance things will get easier. 🙂

 

[mashedupmatt]

The autoantibody tests usually take around a month to come back but hopefully that will confirm things - The unpredictability of "home-grown" insulin is very tricky to navigate to start with and how long this will continue is anyone's guess, so for some it's weeks, for some it's months, and for others it's years so always best to take a conservative amount of insulin for starters, to avoid hypos - these needs do change though - initially I was on 1u for every 20g carbs but that changed to 1u for 10g and even less for certain meals (and all of that in a in a relatively short period of time) - everything is so very individual though so discuss any potential ICR changes with your Diabetes team (I am unable to give advice on ratios) - I found exercise tricky to start with and it does depend on the type of exercise you are doing - there are lots of different ways of dealing with it, and I've tried a few, including lowering doses beforehand and afterwards, but it is all trial and error I'm afraid - one thing I do that does help though is to make sure I'm not starting exercise with BG of less than 7 (a couple of sweets helps to raise it if I'm below it) and always make sure you have hypo treatment nearby - the Learning Zone (at the top of the page) has a section on exercise which is worth checking out and it's definitely not a good idea to cut it out altogether, it's about finding what works for you - and yes 100% it does get easier but unfortunately it's a Marathon, not a sprint

 

[Skater P]

Hi @mashedupmatt, I’m being treated as type 1. I’ve been told C-peptide and symptoms indicate type 1, possibly LADA, but I’m still waiting for the GAD result. Still producing some insulin, which I am finding challenging - it’s hard to accurately dose as my ICR isn’t straight forward to calculate. Similarly, I’m finding any significant amount of exercise is results in a drop with any amount of insulin, so will be reaching out for some advice on that (current plan is to not have any and see what happens).
Thanks for your message, and appreciate the assurance things will get easier. 🙂

Hi Mike

Welcome to the club! Sounds like you are where I was a few months ago, I'm 3 months into T1D LADA, recently had it confirmed by the same tests you are waiting for. Pancrease is still making a little insulin. I'm also on Lantus and NovoRapid but with a Dexcom G7 (I tried a Libre but much prefered Dexcom for lots of reasons)

You are likley to have heard some of this before but just in case...

Talking I to C Ratio(s)
The main thing is they change so I have lots, (These are my numbers, yours will be different, please consult with your team) I would be 1:12 for breakfast then up to 1:16 for lunch and dinner. They would also change (increase) if I'd been exercising in the last the few days before so today I used 1:20 for breakfast and it worked well, also timing the jab, (I pre-bolus 15 minutes) has a big difference in spike shape, height etc. I ran a spreadsheet of BG, carbs, units and exercise to start with which helped give me a stong idea of my I to C ratios before I got a CGM.

And as you know, exercise changes everything.
Low intensity aerobic (a bike ride of an hour or up) will drop my BG, it will take a while to hit but I will have to add more carbs to stop going low (about 10g every 20 minutes) after I finish I go back to "normal" quickly. I tend to use a bike ride rather than a "corrective" insulin dose if I've got the numbers wrong and gone too high, at least that is my excude for another bike ride in this lovely weather.

Something like interval training can push BG up (or keep it level) then after I finish I drop, much harder to manage for me but it is one of my favourite sports, so...

The great thing I have found is the exercise (especially the cumlative effect of a few days worth) is makes me sensitive enough that that the insulin I'm still making is taking much of the load, so I get softer landings from post meal highs etc
My basal is still a bit of a guess (I might have to drop it a bit more) as I'm still getting the odd "enforced midnight feast"

 

[Mike3]

Hi Mike

Welcome to the club! Sounds like you are where I was a few months ago, I'm 3 months into T1D LADA, recently had it confirmed by the same tests you are waiting for. Pancrease is still making a little insulin. I'm also on Lantus and NovoRapid but with a Dexcom G7 (I tried a Libre but much prefered Dexcom for lots of reasons)

You are likley to have heard some of this before but just in case...

Talking I to C Ratio(s)
The main thing is they change so I have lots, (These are my numbers, yours will be different, please consult with your team) I would be 1:12 for breakfast then up to 1:16 for lunch and dinner. They would also change (increase) if I'd been exercising in the last the few days before so today I used 1:20 for breakfast and it worked well, also timing the jab, (I pre-bolus 15 minutes) has a big difference in spike shape, height etc. I ran a spreadsheet of BG, carbs, units and exercise to start with which helped give me a stong idea of my I to C ratios before I got a CGM.

And as you know, exercise changes everything.
Low intensity aerobic (a bike ride of an hour or up) will drop my BG, it will take a while to hit but I will have to add more carbs to stop going low (about 10g every 20 minutes) after I finish I go back to "normal" quickly. I tend to use a bike ride rather than a "corrective" insulin dose if I've got the numbers wrong and gone too high, at least that is my excude for another bike ride in this lovely weather.

Something like interval training can push BG up (or keep it level) then after I finish I drop, much harder to manage for me but it is one of my favourite sports, so...

The great thing I have found is the exercise (especially the cumlative effect of a few days worth) is makes me sensitive enough that that the insulin I'm still making is taking much of the load, so I get softer landings from post meal highs etc
My basal is still a bit of a guess (I might have to drop it a bit more) as I'm still getting the odd "enforced midnight feast"

Hey, good to hear how you have been navigating this.
I’m not quite sure where to begin with fine tuning my ICR. I don’t really know what good looks like? Currently, a success is anything that doesn’t have a huge spike or sudden drop. My diabetes team said try 1:10, 1:12 or 1:15 and sent me on my way.
With exercise I’ve been finding even a shortish walk an hour after eating can cause a sharp drop in BG. I was taking half (or even less) the insulin needed but that didn’t prevented them. I’m not sure if it’s a dose or a timing thing. Has this happened to you?
I think as soon as I accept things aren’t black and white, and it’s more about trial and error I’ll get to grips with this.

 

[SB2015]

Hi @Mike3 A belated hello from me, another late starter with T1 (LADA)

There is no good ICR, just whatever you need it to be to suit you. For me this varies during the day and has changed over time. The Honeymoon period (who thought that that was a good name for it) makes things a lot less unpredicatable as those beta cells that you still have, get a bit of a rest now that you are also injecting insulin, and then decide that they are ready for action again. You are already making adjustments day by day. I found that things settled as my beta cells dropped off.

Just wondering when you are injecting for your meals. I used to inject just before I ate, and got big spikes afterwards. Then I spotted info on here about pre-bolusing and gradually changed the gap between my bolus and eating. This also changes during the day for me, and whilst it doesn’t remove the post meal rise it does reduce it. This is because the insulin takes a bit of time to get from the injection site to where it needs to be and to shake off its protective cover and start work.

Keep the questions coming, and tap into the hive of experience. Nothing is considered silly on here.

 

[SB2015]

With exercise I’ve been finding even a shortish walk an hour after eating can cause a sharp drop in BG. I was taking half (or even less) the insulin needed but that didn’t prevented them. I’m not sure if it’s a dose or a timing thing. Has this happened to you

This definitely happens to me. I was amazed that just a 20 min walk into town could send me hypo. You are doing the right thing adjusting your doses, and it may be that at present your own insulin is enough to deal with the food before your walk. As you say nothing is black and white. It is all trial and improvement and nothing stays still for very long. Just go with the flow and give yourself a massive pat on the back for all that you have got to grips with already. Well done.

 

[Mike3]

Hi @Mike3 A belated hello from me, another late starter with T1 (LADA)

There is no good ICR, just whatever you need it to be to suit you. For me this varies during the day and has changed over time. The Honeymoon period (who thought that that was a good name for it) makes things a lot less unpredicatable as those beta cells that you still have, get a bit of a rest now that you are also injecting insulin, and then decide that they are ready for action again. You are already making adjustments day by day. I found that things settled as my beta cells dropped off.

Just wondering when you are injecting for your meals. I used to inject just before I ate, and got big spikes afterwards. Then I spotted info on here about pre-bolusing and gradually changed the gap between my bolus and eating. This also changes during the day for me, and whilst it doesn’t remove the post meal rise it does reduce it. This is because the insulin takes a bit of time to get from the injection site to where it needs to be and to shake off its protective cover and start work.

Keep the questions coming, and tap into the hive of experience. Nothing is considered silly on here.

I’ve been injecting 15 mins before meals. I hadn’t considered time of day would alter things.
My own insulin definitely had a kick start when I took the load off with injections. For the first few weeks it was pretty predictable then something changed and I noticed I was correcting drops with food. It came to ahead when most nights I’d sit up until the early hours until they stabilised with a midnight snack, and a 5-10 min walk would drop me to the floor. I felt out of control and my anxiety went through the roof.
I’ve made some big changes this weekend. Reduced my basal and stopped taking bolus for meals. Increased exercise and reduced carbs. So far I’ve stabilised and 90% of the time I’m in range with no sudden drops. Spikes are softer and rise 2 mmol/l briefly. Plan to see how I get on for a few days and keep adjusting as things change.
For the first time in weeks I feel relaxed and positive.