I’m just looking for some advice , I was diagnosed type 1 after a serious DKA, I’m now on set units of levimir which is 8 units morning and night, and 5 units of nova rapid with my 3 meals a day. I find I can keep it quite stable but if I do anything such as cleaning , walk or even play with my kids for too long I drop into hypos , I’ve been on these set units now for 2 months and I was wondering how long till everyone was able to adjust themselves as I think I could control it better that way. The whole diagnosis and fear of the drops daily has had a huge impact on my mental health and I’m just looking for any advice, thanks
-
Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
Newbie type 1 advice
- Thread starter RoseH
- Start date
- Status
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello Rose, yes you can adjust your own insulin and good for you for doing so 🙂
If it worries you then either run it past your team or perhaps have a snack before embarking on the exercise.
PS, please don't swear on the forum................ Cleaning 😱 🙂
If it worries you then either run it past your team or perhaps have a snack before embarking on the exercise.
PS, please don't swear on the forum................ Cleaning 😱 🙂
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi Rose and welcome
I think Covid is hampering education courses re carb counting etc and in most cases the general support that new diabetics get, so you will need to push a bit for what you need. Have you discussed the situation with a DSN? Do you have a contact number for them?
I think I was adjusting my NovoRapid within a month but that was because I was following a low carb way of eating and the set doses of 4 units per meal were way too high for me. I don't think I started adjusting my basal insulin until after I had a DAFNE course (Dose Adjustment For Normal Eating) which was about 7 months after I started on insulin. Levemir is a great basal insulin and will enable you to fine tune it to your needs but understanding how it works and when a dose adjustment is needed and how much is something that takes time and experience in my opinion. To me, basal insulin seems to be much more powerful in a lot of respects and obviously has implication as regards night time hypos if you get it wrong so I would be pushing for an education course like DAFNE or whatever your local equivalent is. It is an intensive 5 day course, but makes such a difference to your understanding and confidence to adjust doses safely and keep yourself safe with insulin in many other real life situations including illness, exercise and alcohol use.
Being confident to adjust my basal insulin has made a huge difference to my whole mental outlook as regards my diabetes, but I am not sure I would have had enough understanding of it without the DAFNE course.... and the time I spend on this forum, learning from others.
My advice would be to speak to a DSN and explain the situation and ask for an education course.
I think Covid is hampering education courses re carb counting etc and in most cases the general support that new diabetics get, so you will need to push a bit for what you need. Have you discussed the situation with a DSN? Do you have a contact number for them?
I think I was adjusting my NovoRapid within a month but that was because I was following a low carb way of eating and the set doses of 4 units per meal were way too high for me. I don't think I started adjusting my basal insulin until after I had a DAFNE course (Dose Adjustment For Normal Eating) which was about 7 months after I started on insulin. Levemir is a great basal insulin and will enable you to fine tune it to your needs but understanding how it works and when a dose adjustment is needed and how much is something that takes time and experience in my opinion. To me, basal insulin seems to be much more powerful in a lot of respects and obviously has implication as regards night time hypos if you get it wrong so I would be pushing for an education course like DAFNE or whatever your local equivalent is. It is an intensive 5 day course, but makes such a difference to your understanding and confidence to adjust doses safely and keep yourself safe with insulin in many other real life situations including illness, exercise and alcohol use.
Being confident to adjust my basal insulin has made a huge difference to my whole mental outlook as regards my diabetes, but I am not sure I would have had enough understanding of it without the DAFNE course.... and the time I spend on this forum, learning from others.
My advice would be to speak to a DSN and explain the situation and ask for an education course.
I’ve been told to stay on set units for now and I’ll be able to adjust in time while my body gets used to insulin but it’s been 2 months and it’s so difficult because any time I try do anything it just drops , I speak to my diabetes team weekly but I have taught myself carb counting and I just want to feel normal again. Haha I know with two young children cleaning is never ending
I have been told there is a course I will be sent on which I assume is that but I was told after about a year from diagnosis I have weekly meetings with my diabetes team and I’ve told them I’ve taught myself carb counting but they still insist I stay on set units for now, they adjusted my levimir due to drops in the night and with me loosing so much weight from the DKA the ten units morning and night was too much so they changed to 8. Which is a little more stable but when it comes to the meals sometimes the set units is too much and will be ok as long as I literally do nothing and with two young children that’s impossible , I’m glad your experience is positive I just hope I get there , it’s been a lot from living my normal life , to catching a bug and nearly loosing my life to DKA to this new diagnosis with no idea how to be normal again x
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
If you are going hypo then your set dose it too high so you are quite right to lower the dose and if you can carb count then adjust your insulin for what you eat. Life is not for living in hypo land.
As you are newly diagnosed I would suspect you are going through the honeymoon period which means your pancreas is coughing and spluttering out the last dredges of insulin so this could mean that you will be able to stop your bolus for a little while but def lower it for your own safety.
As you are newly diagnosed I would suspect you are going through the honeymoon period which means your pancreas is coughing and spluttering out the last dredges of insulin so this could mean that you will be able to stop your bolus for a little while but def lower it for your own safety.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
If you always drop when cleaning, then have a small carby snack beforehand or during it. Sometimes we need ‘top-up’ carbs.
Who says you can’t carb count? There’s nothing to stop you doing so if you know you can do it and be safe. As long as you always err on the side of caution and understand that you might still be making some insulin of your own that can randomly push you low, that’s fine.
I started off on fixed doses and fixed carb amounts and two injections a day because that was how things worked then, but I pretty soon realised that I could adjust my fast-acting insulin and I did so by myself. I’ve never been on a course. Basic carb counting is simple.
I urge you again to always, always be cautious, but you are in charge of your diabetes not your team. Experiment carefully. I kept a notebook with my meals and insulin doses in at first.
Yes they mentioned the honeymoon phase , they think I’m still there but they want everything to carry on as it is for when it ends , this is all new to me so thank you all for helping when they told me it was type 1 in the hospital i think I totally underestimated how difficult this would be and I’m two months down the line just constantly annoyed and upset at the lack of control I have of this but I’ll speak to the team about letting me adjust because I think with a little adjustment I can hopefully feel myself a bit more x
What would you suggest for a quick carby snack I’ve tried different snacks but I often find they don’t work in time and I’ve dropped before they work , I’ll speak to my team about letting me adjust , I will also keep a notebook thank you for the advice x
I agree with others that this is your condition that you live with 24 hours a day so you should feel comfortable to take charge.
Waiting a year before carb counting and being on fixed doses (especially when they are not always working for you) seems a long wait.
There is an online version of the DAFNE course called Bertie online which you could do in your own time … that’s if you have any with two kids.
But, be cautious, don’t try to sprint before you can walk and don’t expect perfection.
Waiting a year before carb counting and being on fixed doses (especially when they are not always working for you) seems a long wait.
There is an online version of the DAFNE course called Bertie online which you could do in your own time … that’s if you have any with two kids.
But, be cautious, don’t try to sprint before you can walk and don’t expect perfection.
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
The trouble is Rosie you are not safe on the set amount it's far to much. Basic terms you are overdosing on insulin. How long after you have injected your bolus and eaten do you go hypo?
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
I’d have something fast-acting first eg Dextro tabs or jelly babies, and then some longer-acting carbs eg a digestive biscuit. You can adjust the balance of those two kinds. You might even find you only need fast carbs eg a 150ml can of sugar Coke before you start. I also like the cake bar things and find they work well.
It’s completely understandable why you’re stressed. Being on the verge of a hypo all the time is horrible. It steals your mental energy too. It limits your life and causes unnecessary fear. You can reduce these hypos with careful and appropriate action - less insulin, snacks when needed, and getting your insulin to carb ratios right at meals.
Especially when they tell me to try eat well but then sometimes my meals even though make sure I’m having carbs isn’t enough for the amount of insulin, i usually experience hypos anywhere between about an hour after eating to a few hours after x
Thank you so much I’ll try these snacks I’ve got jelly babies for full blown hypos but never had them to keep them off , I’m totally clueless a lot of the time so all the info helps , hopefully get a bit of quality of life back and enjoy myself a bit again xx
Thank you so much , I’ll look into the course and I think so too but I’ve just taken everything they’ve said as I have no clue what I’m doing really but I will speak to the diabetes team and hopefully get somewhere soon x
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
A good way to help get your meal insulin right is to take one meal at a time eg breakfast. Eat the same breakfast every day eg two Weetabix and 150ml milk or whatever. With your normal breakfast insulin dose what happens? If you go low, knock some insulin off that dose. Eat exactly the same breakfast the next day with that new reduced dose. If you’re still going low, knock a bit more off, etc Eventually you’ll find the right dose for that breakfast.
It’s simple and basic but it works very well.
If you’re constantly going low then don’t wait to speak to your team, do something now. My first weeks were utter misery until I stepped up and took control. You need to be your own advocate and be a lot more pushy than you probably usually are.
Jelly babies and other hypo treatments are not just for hypos. You can have them for a quick sugar burst before cleaning, before exercise, before going shopping, etc 🙂
It’s simple and basic but it works very well.
If you’re constantly going low then don’t wait to speak to your team, do something now. My first weeks were utter misery until I stepped up and took control. You need to be your own advocate and be a lot more pushy than you probably usually are.
Jelly babies and other hypo treatments are not just for hypos. You can have them for a quick sugar burst before cleaning, before exercise, before going shopping, etc 🙂
Last edited:
I’ve kept my breakfast the same , same with dinner because I was having brown toast originally for breakfast and it dropped daily which was scary when driving the school run so I now have white , it still drops but later on , that’s a really good idea thank you and yes I’m really not pushy at all wish I would have been as for the year I’ve been told all my symptoms was anxiety and it took a DKA with ketones of 7 for someone to realise it wasn’t anxiety and perfect thank you I’ll be sure to use my jelly babies for that, be nice to do normal things again x
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
@RoseH If you’re anxious about changing your insulin doses, then you could always approach it from the other end - ie change your food/carbs. So, leave your meal dose the same but increase the amount of carbs you eat for that meal.
You could also experiment with between meal snacks if you feel they’d help.
I promise it does get easier gradually.
You could also experiment with between meal snacks if you feel they’d help.
I promise it does get easier gradually.
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Type 1 seems to be finding the balance of carbs and insulin dose and it is early days for you still so until you are able to find that balance you have to keep safe even if that means eating more carbs. Those carbs aren't necessarily going to be 'unhealthy'.
It is always going to be a learning process as people who have had Type 1 diabetes for many years will testify.
You will get lots of support on your journey from people here so just ask any questions and touch base with how you are getting on with any changes you make.
- Status