hello everyone, as a newbie I am not sure how this site works as well as still finding my feet with diabetes, can anyone tell me how they've coped with it all and how was the first few months for you? I've been getting infections as well as still having high sugar levels and been having pains in my fingertips, feet and ankles
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Newbie T1 Diabetic - still finding my feet
- Thread starter Flick83
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Inka
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- Type 1
Hi @Flick83 🙂
The first few months are hard but it gradually gets easier - really. It also becomes more routine and starts to fit into your life.
You mention high sugars. How high? What insulins are you taking? Are you carb counting? Is there any particular times of day that you’re high?
The pains you’re getting could be connected to your high sugars.
The first few months are hard but it gradually gets easier - really. It also becomes more routine and starts to fit into your life.
You mention high sugars. How high? What insulins are you taking? Are you carb counting? Is there any particular times of day that you’re high?
The pains you’re getting could be connected to your high sugars.
I am on NovoRapid in the day 6 units at breakfast 6 at lunch and 6 at tea time and then at night I am on Lantus and thats 12 units at night. I eat healthy as I can but haven't seen a dietician yet ( I was diagnosed 4 months ago) and haven't really seem anyone since I was discharged from hospital and then I ended up back in hospital 2 weeks ago as my sugar levels were 27 and the hospital were not happy no one had seen me since I was discharged and they blamed Covid19 for not keeping in touch. my sugar levers start between 4-10 in the morning and slowly creep up and by bedtime its anywhere between 15-25 and can't work out why etc I haven't been shown how to carb count yet till I see the team at the hospital which I am seeing on 22nd of this month
Inka
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Ok, so you’re on fixed doses for meals 🙂 That means you need to eat the right amount of carbs for your 6 units. If you eat too many, your blood sugar could go high, too few and you’re at risk of going low.
I was on fixed meal doses too when I was diagnosed but was also given an amount of carbs for each meal. That made it a hell of a lot easier. You can, however, get an idea of whether you’re getting the carbs right by testing your blood sugar before you eat and two hours after the start of your meal.
There’s a good online education course for Type 1 that you might like to look at:
https://www.bertieonline.org.uk/
I’m sorry Covid seems to have interfered with the support you should be getting. At least the 22nd isn’t too far away now.
We can’t give dosage advice here but if you have any questions, there are always people around who can help, so do keep checking back (it’s often quieter here on Saturdays). There is also a section at the top of this web page called Learning Zone (orange tab). That’s got some basic stuff on.
I was on fixed meal doses too when I was diagnosed but was also given an amount of carbs for each meal. That made it a hell of a lot easier. You can, however, get an idea of whether you’re getting the carbs right by testing your blood sugar before you eat and two hours after the start of your meal.
There’s a good online education course for Type 1 that you might like to look at:
https://www.bertieonline.org.uk/
I’m sorry Covid seems to have interfered with the support you should be getting. At least the 22nd isn’t too far away now.
We can’t give dosage advice here but if you have any questions, there are always people around who can help, so do keep checking back (it’s often quieter here on Saturdays). There is also a section at the top of this web page called Learning Zone (orange tab). That’s got some basic stuff on.
Kaylz
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- Type 1
You don't really need to be shown, I'm self taught and did so on the say so of my diabetes team less than a month into my diagnosis, it really would make managing your diabetes easier xx
Kaylz
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This isn't dosing advice just to make things clear, I started on the standard for what they advise which is 1 unit covers 10g carbohydrates, then it's just a case of weighing your foods and calculating the carbohydrates for them, and then using the insulin to carbohydrate ratio to inject, ratios can change from time of day etc and it does take a lot of work to establish your own needs but its very doable xx
trophywench
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- Type 1
To me, it sounds as if your basal insulin (ie your Lantus) dose is not enough for your needs. If the basal dose isn't enough - you'll never completely sort out your mealtime ratio and doses.
Hence I'm going to strongly suggest you do some basal testing before you get to Tuesday and your appointment, as well as the pre and post meal testing between now and then!
Here's the way -
www.diabetes-support.org.uk
The fingerprick testing we're asking you to do will give both you and the clinic a far better insight into how your body is handling things.
Don't fiddle with any doses of either insulin, until you've seen them with whatever testing results you've assembled by then. And then come back and tell us, please and we'll be able to fill in any blanks for you.
Don't feel anything is your fault! None of us used to know any of this stuff either, we have all been where you are, none of us enjoyed it and anything we can do, say or suggest to help you - we will. You are NOT a nuisance - you are exactly why the forum was created in the first place! No question is considered 'stupid' - but please bear in mind that some of the answers might be, simply because we're all humans. Hence why we do try to give proper explanations of why we're saying things.
If you don't understand anything someone says - whether they are from DUK or anyone else - if it doesn't make sense to you - then just say so!
Hence I'm going to strongly suggest you do some basal testing before you get to Tuesday and your appointment, as well as the pre and post meal testing between now and then!
Here's the way -
Basal insulins « Diabetes Support Information Exchange
www.diabetes-support.org.uk
The fingerprick testing we're asking you to do will give both you and the clinic a far better insight into how your body is handling things.
Don't fiddle with any doses of either insulin, until you've seen them with whatever testing results you've assembled by then. And then come back and tell us, please and we'll be able to fill in any blanks for you.
Don't feel anything is your fault! None of us used to know any of this stuff either, we have all been where you are, none of us enjoyed it and anything we can do, say or suggest to help you - we will. You are NOT a nuisance - you are exactly why the forum was created in the first place! No question is considered 'stupid' - but please bear in mind that some of the answers might be, simply because we're all humans. Hence why we do try to give proper explanations of why we're saying things.
If you don't understand anything someone says - whether they are from DUK or anyone else - if it doesn't make sense to you - then just say so!
rebrascora
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- Type 1
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- She/Her
Hi and welcome from me too.
Becoming an active member of this forum was probably the single most helpful thing in my first few months of diagnosis, so hopefully you will find the same.
I came into things slightly differently in that I was initially assumed to be Type 2 so I had 6 weeks of very strict diet and oral meds before being started on insulin, so I was very aware of the effects of carbohydrates before I started injecting insulin and had got my readings down into single figures by gradually cutting out almost all carbs from my diet and using my BG meter to see which foods caused me the most problems and then simply avoided them. I now continue to eat low carb which means I need to inject less insulin.
As @Kaylz says, the starting point is generally 10g carbs to 1 unit of insulin and then see how you go. The more often you test, the more you will understand how your BG responds, so be prepared to experiment and test lots. Before eating and 2 hours after is a good starting point.
Details of the carbohydrate content of foods is found with the nutritional information on packaging, usually in small print on the back or side. Total carbohydrates are what you are looking for. Ignore the sugar content.
So things like porridge oats are usually about 63g carbs per 100g, which means that a 50g portion of those porridge oats contains 31.5g carbs (say 30g for round numbers) . If you have sugar on it then you need to weight or measure the sugar. There is about 5g carbs in a teaspoon of sugar, so 3 level teaspoons of sugar would be 15g carbs. If you have a dozen large blueberries in it you can probably add another 10g carbs, so that would add up to 55g carbs... add in your milk and some milk in your coffee and you are up to 60g so if you assume 10g carbs to each unit of insulin, your 6 units of NovoRapid for breakfast would be near enough right if that was the breakfast you ate.... I am just giving it as an example though. If you replaced the sugar with sweetener and didn't have the blueberries you would be looking at about 35g carbs with the milk which would be equivalent to 3.5units of NR. Assuming you don't have a half unit pen, you would then look at your morning reading and if it was a bit high you would round it up to 4 and if it was a bit low you would just inject 3 units. Then you test 2 hours later and record the reading and then before lunch. Keeping a food diary with your readings is the single most useful thing you can do and there are phone apps you can download which you can use for this. MySugr is one such app.
If you lunchtime reading is consistently higher or lower than you expect then it suggests that the insulin ratio for the previous meal was incorrect so you might have to adjust the ratio to 15g to 1 unit of insulin if you are particularly sensitive to insulin and your lunchtime readings were consistently low or 5g carbs to 1 unit of insulin and see how that goes, but 10g carbs to 1 unit should be the starting point.
I know it probably all sounds very complicated at first, but it soon becomes second nature and you know the carbohydrate content of a whole range of products off the top of your head and learn to assess the number of carbs reasonably closely just by looking at a plate of food. There is a lot of work involved initially, but it gets so much easier with practice.
As others have said, anything you don't understand, just ask. If you want someone to double check your calculations for the carb content of foods until you get the hang of it, I think it would probably be OK for us to do that. What we can't do is tell you to take a particular dose for a particular meal.
Becoming an active member of this forum was probably the single most helpful thing in my first few months of diagnosis, so hopefully you will find the same.
I came into things slightly differently in that I was initially assumed to be Type 2 so I had 6 weeks of very strict diet and oral meds before being started on insulin, so I was very aware of the effects of carbohydrates before I started injecting insulin and had got my readings down into single figures by gradually cutting out almost all carbs from my diet and using my BG meter to see which foods caused me the most problems and then simply avoided them. I now continue to eat low carb which means I need to inject less insulin.
As @Kaylz says, the starting point is generally 10g carbs to 1 unit of insulin and then see how you go. The more often you test, the more you will understand how your BG responds, so be prepared to experiment and test lots. Before eating and 2 hours after is a good starting point.
Details of the carbohydrate content of foods is found with the nutritional information on packaging, usually in small print on the back or side. Total carbohydrates are what you are looking for. Ignore the sugar content.
So things like porridge oats are usually about 63g carbs per 100g, which means that a 50g portion of those porridge oats contains 31.5g carbs (say 30g for round numbers) . If you have sugar on it then you need to weight or measure the sugar. There is about 5g carbs in a teaspoon of sugar, so 3 level teaspoons of sugar would be 15g carbs. If you have a dozen large blueberries in it you can probably add another 10g carbs, so that would add up to 55g carbs... add in your milk and some milk in your coffee and you are up to 60g so if you assume 10g carbs to each unit of insulin, your 6 units of NovoRapid for breakfast would be near enough right if that was the breakfast you ate.... I am just giving it as an example though. If you replaced the sugar with sweetener and didn't have the blueberries you would be looking at about 35g carbs with the milk which would be equivalent to 3.5units of NR. Assuming you don't have a half unit pen, you would then look at your morning reading and if it was a bit high you would round it up to 4 and if it was a bit low you would just inject 3 units. Then you test 2 hours later and record the reading and then before lunch. Keeping a food diary with your readings is the single most useful thing you can do and there are phone apps you can download which you can use for this. MySugr is one such app.
If you lunchtime reading is consistently higher or lower than you expect then it suggests that the insulin ratio for the previous meal was incorrect so you might have to adjust the ratio to 15g to 1 unit of insulin if you are particularly sensitive to insulin and your lunchtime readings were consistently low or 5g carbs to 1 unit of insulin and see how that goes, but 10g carbs to 1 unit should be the starting point.
I know it probably all sounds very complicated at first, but it soon becomes second nature and you know the carbohydrate content of a whole range of products off the top of your head and learn to assess the number of carbs reasonably closely just by looking at a plate of food. There is a lot of work involved initially, but it gets so much easier with practice.
As others have said, anything you don't understand, just ask. If you want someone to double check your calculations for the carb content of foods until you get the hang of it, I think it would probably be OK for us to do that. What we can't do is tell you to take a particular dose for a particular meal.
rebrascora
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- Type 1
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- She/Her
Very much agree with @trophywench's post above about basal testing first.
rebrascora
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- Relationship to Diabetes
- Type 1
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- She/Her
It is the equivalent of being thrown in at the deep end of a degree course, so don't expect to understand everything straight away. It takes time to figure it all out and even then things never go smoothly for long. The goal posts keep moving just when you think you have got the hang of it.
I am guessing you are finger pricking for BG readings at the moment? It seems to be the case that they start many newly diagnosed Type1s on Freestyle Libre straight away these days, so hopefully you will be authorised for those on prescription when you see the clinic team. Libre is a sensor which is applied to your arm and lasts 14 days and you can take readings whenever you like by swiping the reader or your phone over the sensor instead of pricking your finger. It also collates data, ever few minutes, day and night and plots a graph so you can see exactly what is happening with your levels even when you are sleeping. If they don't mention it, ask about it.
I am guessing you are finger pricking for BG readings at the moment? It seems to be the case that they start many newly diagnosed Type1s on Freestyle Libre straight away these days, so hopefully you will be authorised for those on prescription when you see the clinic team. Libre is a sensor which is applied to your arm and lasts 14 days and you can take readings whenever you like by swiping the reader or your phone over the sensor instead of pricking your finger. It also collates data, ever few minutes, day and night and plots a graph so you can see exactly what is happening with your levels even when you are sleeping. If they don't mention it, ask about it.
Inka
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- Relationship to Diabetes
- Type 1
When I first started adjusting my insulin, I tested my blood sugar before and after the same meal as I detailed above and then worked out what dose worked for that meal - ie what amount of insulin ‘covered’ the amount of carbs in the meal.
I know you addressed your question to @Kaylz not me but she’s quite right in that it’s not hard to do, especially not on a basic simple level. Once you get the principle in your head, it’s pretty easy.
When I was first diagnosed, I had a ‘diet’ of around 200g carbs per day spread out according to my fixed meal-time doses. I stuck with that for a while, then started to adjust my own doses if I wanted to eat more (or less) than my set amount of carbs.
I believe the BERTIE course I linked to above goes through carb counting. Even if you don’t do anything and wait until your appointment as suggested above, just having a basic understanding of what it is will help you take on board the information you’re given a lot more easily.
Another thing I’d recommend is a good set of digital scales. They make it really easy to be accurate with your carb counting. I still weigh my pasta, cereal, etc even now 25 odd years since I was diagnosed. I also recommend a food/meals notebook. Mine was invaluable to start with as it meant I had a record of carbs in meals and insulin doses and any comments eg if I wanted fishfingers and chips, I’d look in my notebook and see that 3 fishfinger plus so many grams of oven chips equalled 45g carbs or whatever. On set doses, I then had a section where I had lists of foods that were 5g, 10g, 15g carbs etc. So if my evening meal set dose was 5 units of insulin and I had to eat 50g carbs, I had my fishfingers and chips (45g) and chose a 5g item to make it up to the 50g carbs.
Basically, you’re having to do the job of your pancreas as far as controlling blood sugar is concerned.
Finally, you’ve mentioned high sugars (and it’s good you were in hospital when you were 27). In future, you’ll learn about correction doses - how to take a little extra insulin to bring down high sugars into a normal range.
Don’t let all this ‘stuff’ get to you. It’s all different to start with, but you’ll soon pick it up 🙂
SB2015
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- Relationship to Diabetes
- Type 1
Welcome to the forum @Flick83
Sorry to hear about your diagnosis. As others have said it really does get easier.
I found the best analogy is it is like learning to drive. It seems like there is loads to remember to do at first, but eventually it all becomes automatic and you are just watching out for obstacles on the way.
It is more difficult atbthe start as you will no doubt still have some Beta cells, which make the insulin, and they will every now and then decide to kick out a bit extra. Eventually this settles down.
As others have said the main things is to get the carbs sorted and find out what your ratio is. They will work on this with you after a little while, but it is quite common to start on fixed doses at the start.
Be patient, read what you can and ask absolutely any questions that you have. None of us mind. We have all been there.
Sorry to hear about your diagnosis. As others have said it really does get easier.
I found the best analogy is it is like learning to drive. It seems like there is loads to remember to do at first, but eventually it all becomes automatic and you are just watching out for obstacles on the way.
It is more difficult atbthe start as you will no doubt still have some Beta cells, which make the insulin, and they will every now and then decide to kick out a bit extra. Eventually this settles down.
As others have said the main things is to get the carbs sorted and find out what your ratio is. They will work on this with you after a little while, but it is quite common to start on fixed doses at the start.
Be patient, read what you can and ask absolutely any questions that you have. None of us mind. We have all been there.
Amity Island
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Flick83,
Key thing about managing diabetes is getting the basal insulin dose "just" right (your basal is lantus, taken once a day and lasts about 24hrs).
Basal is ones bench mark from which everything else works from. Ideally, basal (if theoretically no other food was consumed in that same 24hrs (note - you should never skip all meals when on insulin) would keep blood sugar levels at around the same level all day long (if theoretically no exercise was done either).
When basal is "just" right and keeping background blood sugars level throughout the day, it makes getting the mealtime (bolus) (your bolus insulin is NovoRapid) much more predictable and easier.
Carb counting is actually the opposite way around to the method you have first been given. For now, you are on fixed insulin doses and are trying to work out "how much" food (carbs) you can eat with the aim of bringing your blood sugar back to a reasonable (5-9mmol) level before your next meal. By doing it this way around initially, you will come to know you own carb/insulin ratios and then soon move the other way around by working out "how much" insulin is needed to suit the carbs you want to eat, giving you the freedom of eating carbs (or not) more freely.
Keep some fruit juice, dextrose tablets, jelly babies, starburst at hand (always) and if you feel yourself hypo (with low blood sugar typ below 4mmol) take a couple of tablets or a few jelly babies to bring your blood sugar into range (5-9mmol). Keep checking bloods after a hypo as sometimes blood sugars can still fall even after treatments because bolus insulin can work for many hours if you've under estimated your carbs (or taken too much insulin).
There's obviously a bit more to it, but you will pick up the rest in the coming months and you can use the forum as much as you need. There are a few very keen posters on here who regularly give out loads of good advice (for free
)Good Luck!
- Relationship to Diabetes
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Welcome to the forum @Flick83
Sorry to hear about your diagnosis, but glad you have found the forum. Connecting with others who live with doabetes can be a great way of facing the daily ups and downs of diabetes management, picking up practical hints and tips and being made aware of treatment options and sources of information. It’s a great way to build a list of questions for your clinic appointments!
You’ve already had some really helpful suggestions about carb counting (including the excellent Bertie course). But if you want a more basic overview there’s a nuts and bolts introduction from Diabetes UK here.
Keep asking questions, and let us know how your appointment goes on 22nd 🙂
Sorry to hear about your diagnosis, but glad you have found the forum. Connecting with others who live with doabetes can be a great way of facing the daily ups and downs of diabetes management, picking up practical hints and tips and being made aware of treatment options and sources of information. It’s a great way to build a list of questions for your clinic appointments!
You’ve already had some really helpful suggestions about carb counting (including the excellent Bertie course). But if you want a more basic overview there’s a nuts and bolts introduction from Diabetes UK here.
Keep asking questions, and let us know how your appointment goes on 22nd 🙂
Inka
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- Type 1
- Status