Hi could someone let me know where I can get help and support. Have had no help from my Dr and my surgery currently has no diabetic nurse. I called my Drs today at 1.30 and was told they would call me back But I am still sat here waiting for his call. I didn’t know what to do so joined this group to see if there are people who can help me with what levels of insulin to take. I have had high BG since last week.
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- Thread starter Cazer
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PattiEvans
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Hi @Cazer and welcome to the forum.
Sorry to respond to a question with a question, but you say you have been diagnosed with T1 and put on insulin. Which insulins have you been put on? Also have you not seen a proper hospital diabetic team/nurse as opposed to the GPs surgery?
When you say "high BGs since last week" what levels are you seeing? If you can give us a little more info I am sure we can be more helpful to you. {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}
Sorry to respond to a question with a question, but you say you have been diagnosed with T1 and put on insulin. Which insulins have you been put on? Also have you not seen a proper hospital diabetic team/nurse as opposed to the GPs surgery?
When you say "high BGs since last week" what levels are you seeing? If you can give us a little more info I am sure we can be more helpful to you. {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}
I had a DKA back in February this year whilst in Egypt. Took several months to get diagnosis done. I did meet a diabetic nurse at my local surgery while we were still doing tests to see if I was a type 1 or 2. The nurse left and the surgery haven’t replaced her. I am taking Lantus 10 units every night and did see a nurse back in late September early October who said I was in the honeymoon period. She gave me a guide so when testing my blood before. Meal if it is above 12 then I should take 2 units of Novarapid. I am supposed to be going on a carbcounting course but nothing yet organised. All last week I have been struggling to get BG below 18. I just need to know how much to take if it is certain numbers. This evening it was 24.3 so I just took 4 units. i feel so lost and don’t know what I am doing.
Kaylz
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We aren't allowed to advise on insulin dosing as we are all different and react differently so it could be extremely dangerous to suggest how much insulin to take, if I were you I'd call 111 for advise and also get on to your GP tomorrow and insist to be referred to a hospital based diabetes team
We all have different carb ratios and all have different correction factors and these can also vary for us during the day, it's not that we don't want to help and we will in any way we can but this is something that isn't allowed for good reason xx
We all have different carb ratios and all have different correction factors and these can also vary for us during the day, it's not that we don't want to help and we will in any way we can but this is something that isn't allowed for good reason xx
rebrascora
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Hi and welcome.
That must have been incredibly scary going into DKA whilst abroad and it sounds like you haven't had the best support since you got back.
As @Kaylz says we are not supposed to give dosing advice because insulin effects everyone differently and it it an extremely powerful medication which could render you unconscious if you took too much, so it would be dangerous for us to make any suggestions as to dose.
What you can do is drink plenty of water to help flush some of that excess glucose out through your kidneys and as suggested ring 111 for advice and if levels get to the 30s then ring 999.
Do you have a means of testing for ketones? This might be Ketostix which are urine test strips or special blood ketone strips that go in your blood glucose meter and you do a finger prick to use those? You should have been advised to use these to check for ketones if your levels are persistently mid teens or above and as mentioned, you should have been referred to an hospital diabetes clinic for support with managing your condition.
There will be a helpline at the clinic and if you ring your local hospital switchboard and ask to be put through to it, you could leave a message and hopefully someone should get back to you tomorrow or the day after. Obviously you need to leave your name and contact number and brief details of the problem.
Do push your GP surgery to make a referral to the clinic though as that is really important to get the help you need and the hospital may need a referral but should still provide help if you leave a message even if you aren't yet on their books.
That must have been incredibly scary going into DKA whilst abroad and it sounds like you haven't had the best support since you got back.
As @Kaylz says we are not supposed to give dosing advice because insulin effects everyone differently and it it an extremely powerful medication which could render you unconscious if you took too much, so it would be dangerous for us to make any suggestions as to dose.
What you can do is drink plenty of water to help flush some of that excess glucose out through your kidneys and as suggested ring 111 for advice and if levels get to the 30s then ring 999.
Do you have a means of testing for ketones? This might be Ketostix which are urine test strips or special blood ketone strips that go in your blood glucose meter and you do a finger prick to use those? You should have been advised to use these to check for ketones if your levels are persistently mid teens or above and as mentioned, you should have been referred to an hospital diabetes clinic for support with managing your condition.
There will be a helpline at the clinic and if you ring your local hospital switchboard and ask to be put through to it, you could leave a message and hopefully someone should get back to you tomorrow or the day after. Obviously you need to leave your name and contact number and brief details of the problem.
Do push your GP surgery to make a referral to the clinic though as that is really important to get the help you need and the hospital may need a referral but should still provide help if you leave a message even if you aren't yet on their books.
Inka
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- Type 1
She gave me a guide so when testing my blood before. Meal if it is above 12 then I should take 2 units of Novarapid. I am supposed to be going on a carbcounting course but nothing yet organised.
This is totally inadequate advice in my opinion. It’s also not true that you need to do a carb counting course to be able to count carbs. It’s not hard. You should also have been told to use the Novorapid as a proper bolus (meal) insulin, not told to just use it to correct high sugars. That’s it’s secondary use - it’s primary one is to deal with the carbs you eat.
No wonder you’re stressed - you’ve received very poor care IMO. Nobody here is allowed to give you dosage advice but with high levels you need assistance ASAP. With a blood sugar of 24 you should be phoning 111. You need specialist support from someone who understands Type 1.
This is totally inadequate advice in my opinion. It’s also not true that you need to do a carb counting course to be able to count carbs. It’s not hard. You should also have been told to use the Novorapid as a proper bolus (meal) insulin, not told to just use it to correct high sugars. That’s it’s secondary use - it’s primary one is to deal with the carbs you eat.
No wonder you’re stressed - you’ve received very poor care IMO. Nobody here is allowed to give you dosage advice but with high levels you need assistance ASAP. With a blood sugar of 24 you should be phoning 111. You need specialist support from someone who understands Type 1.
rebrascora
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Can you let us know how you get on and what advice they give you..... Just because some clinical staff, especially locums don't know much about Type 1 diabetes and insulin and I think some of us would be more comfortable knowing what had been suggested to you.
rebrascora
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Hi I tried 111 all lines busy so tried online. I must have gone onto the wrong website as they wanted me to pay for an answer.
I have phoned my Drs again this morning and I am still waiting for Dr to call me. I contacted the head diabetic nurse at the hospital but she is on annual leave but gave one of her colleagues number to call. I have called and had message saying she is away until Friday. blood levels this morning were 9.3 and I have just done them again and are 15.7 . So things are better today although I wish I could get someone to help and advise me. It has been helpful the few bits of information I have had on this site though.
I have phoned my Drs again this morning and I am still waiting for Dr to call me. I contacted the head diabetic nurse at the hospital but she is on annual leave but gave one of her colleagues number to call. I have called and had message saying she is away until Friday. blood levels this morning were 9.3 and I have just done them again and are 15.7 . So things are better today although I wish I could get someone to help and advise me. It has been helpful the few bits of information I have had on this site though.
rebrascora
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Hi. Thanks for updating us and good to hear your levels are not too high this morning. Do you take your Lantus at night? I am so sorry you got no where with 111. Keep chasing up the GP and whilst they may not be much help, push them for a referral to the clinic.
In the mean time I can give you 2 bits of information. Firstly, any carbohydrates you eat will increase your BG levels. As a Type 1 diabetic, you should be able to eat normally and adjust your insulin but since you haven't been given guidance on that, you could reduce your carbohydrate intake to help things until you get some further guidance.... So instead of having say toast or cereal for breakfast, you could have an omelette with whatever filling you fancied, or bacon and eggs or scrambled eggs with maybe just 1 slice of bread or Natural Greek yoghurt (full fat version) with a few berries and chopped nuts and mixed seeds.
The other information I will give you is what I was told when I was started on insulin and is a standard starting point I believe for insulin usage which is then adjusted once a person's response to the insulin has been established.
That advice was to assume that 10g carbs would raise your BG levels by 3 mmols and 1 unit of fast acting insulin would drop you by 3 mmols. So if you ate 2 slices of toast which is about 30g carbs (15g carbs per slice for a medium slice) you would need 3 units of meal time insulin. This is known as a 1:10 ratio. Some people need less than this and some people need more but it is a rough starting point for learning to adjust your insulin. It is always best to round the carbs down rather than up, ie use less insulin rather than more.... so if it was 25g carbs, round it down to 20g and use just 2 units.
It is very important not to inject more quick acting insulin within the 4-5 hour period that the insulin is active for, so to keep your meals a minimum of 4 hours apart and to make sure you go to bed on a safe number which is usually about 7-9 but higher at this stage for you is OK. The important thing is to avoid your levels dropping too low through the night.
I am not advising you to start following these guidelines, but just telling you that this is the advice that is generally given. If you de decide to follow that guidance, please keep us updated with how things are going and we will help you as much as possible. You will find carbohydrate values on the back of packets or on the internet. It will be expressed as total carbs and in grams per 100g and may also give a value per portion lilke for one slice of bread or 1 biscuit or in the case of Weetabix, for a 2 biscuit portion which is 26g carbs so with milk it would be about 30g carbs as long as you don't add sugar.
Hoping that I am just about skimming the forum rules whilst trying to give you some practical help and support.
Please feel free to ask if you need help with carb values.... we can advise you quite freely on those or to interpret your results. Keep a food diary with your readings and insulin doses as this will be helpful in interpreting your results. It's just the actual dosing of insulin which we can't directly advise on. Good luck
In the mean time I can give you 2 bits of information. Firstly, any carbohydrates you eat will increase your BG levels. As a Type 1 diabetic, you should be able to eat normally and adjust your insulin but since you haven't been given guidance on that, you could reduce your carbohydrate intake to help things until you get some further guidance.... So instead of having say toast or cereal for breakfast, you could have an omelette with whatever filling you fancied, or bacon and eggs or scrambled eggs with maybe just 1 slice of bread or Natural Greek yoghurt (full fat version) with a few berries and chopped nuts and mixed seeds.
The other information I will give you is what I was told when I was started on insulin and is a standard starting point I believe for insulin usage which is then adjusted once a person's response to the insulin has been established.
That advice was to assume that 10g carbs would raise your BG levels by 3 mmols and 1 unit of fast acting insulin would drop you by 3 mmols. So if you ate 2 slices of toast which is about 30g carbs (15g carbs per slice for a medium slice) you would need 3 units of meal time insulin. This is known as a 1:10 ratio. Some people need less than this and some people need more but it is a rough starting point for learning to adjust your insulin. It is always best to round the carbs down rather than up, ie use less insulin rather than more.... so if it was 25g carbs, round it down to 20g and use just 2 units.
It is very important not to inject more quick acting insulin within the 4-5 hour period that the insulin is active for, so to keep your meals a minimum of 4 hours apart and to make sure you go to bed on a safe number which is usually about 7-9 but higher at this stage for you is OK. The important thing is to avoid your levels dropping too low through the night.
I am not advising you to start following these guidelines, but just telling you that this is the advice that is generally given. If you de decide to follow that guidance, please keep us updated with how things are going and we will help you as much as possible. You will find carbohydrate values on the back of packets or on the internet. It will be expressed as total carbs and in grams per 100g and may also give a value per portion lilke for one slice of bread or 1 biscuit or in the case of Weetabix, for a 2 biscuit portion which is 26g carbs so with milk it would be about 30g carbs as long as you don't add sugar.
Hoping that I am just about skimming the forum rules whilst trying to give you some practical help and support.
Please feel free to ask if you need help with carb values.... we can advise you quite freely on those or to interpret your results. Keep a food diary with your readings and insulin doses as this will be helpful in interpreting your results. It's just the actual dosing of insulin which we can't directly advise on. Good luck
Wow! thank you. Yes I am on Lantus at night normally 10 units. I took more last night 15 units (which was the dose I had when I came out of hospital first) I am hoping this will keep my levels down. I am going to keep a diet sheet and journal from today. I do tend to have a small bowl of cereal in the morning. I think I will try reducing my carbs and see if I can control it better. I have just ordered a book carbs and Cals online so I am hoping that helps me understand the values. Thanks for your help. I understand that I cannot be given advise from people who are not qualified but some of the guidelines you have pointed out are very helpful.
Inka
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Lantus is a background insulin so shouldn’t really be used to deal with food. I would be cautious about increasing it. There’s absolutely nothing wrong with eating cereal or other carbs. I guess @rebrascora was just offering a temporary solution until you got the help you need with your insulin doses.
I eat cereal every day, bread and fruit for lunch, pasta or whatever for tea. The only difference is I was shown how to use my bolus/meal insulin properly when I was diagnosed. You weren’t. This is your problem not your diet.
I’d speak to the hospital Diabetes Specialist Nurse in preference to your GP if you can. They’re very knowledgable. What you need is help to use your Novorapid properly - ie before meals.
I eat cereal every day, bread and fruit for lunch, pasta or whatever for tea. The only difference is I was shown how to use my bolus/meal insulin properly when I was diagnosed. You weren’t. This is your problem not your diet.
I’d speak to the hospital Diabetes Specialist Nurse in preference to your GP if you can. They’re very knowledgable. What you need is help to use your Novorapid properly - ie before meals.
rebrascora
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It is generally advised to increase or decrease your basal by 10% at a time and then assess the effectiveness of the change after 3 days, so your increase of 5 units was a bit of a bold one. The problem with basal insulin (your Lantus) is that you can't take it out once it is in there and it acts over a long period, so more regular testing would be a good idea today and to be particularly careful in the evening. As I said, top up with 2-3 digestives if your levels are below 7 at bedtime tonight. It clearly dropped you a lot overnight. What was your bedtime reading last night?
Leadinglights
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You would probably find it useful in the first place to actually weigh things like cereals rather than eyeballing the amount.
That would give you a better feeling for the portion size to have.
That would give you a better feeling for the portion size to have.
Yes i understand about increasing my Lantus, it was my decision to increase it last night as I didnt know what else to do I tried contacting my doctor and even a diabetic head nurse from the hospital who is on annual leave. I haven‘t seen anyone since October and have no help I have been trying to cope with this on my own and it’s been hard the past week. I haven’t been able to keep my levels down. I am lacking knowledge and am sure when I learn this it will all improve. some of the help which has been given over this forum has really helped me. It is the first help I have had. And I am grateful and it is better than trying to cope and work it out on my own.
Bruce Stephens
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Which is just stupid: there surely must be some plan they have for cover?
If you haven't already, try ringing the Diabetes UK helpline. I presume they won't be able to give direct help but they may well be able to find somebody you can contact.
Inka
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It wasn’t criticism @Cazer 🙂 More concern. Does your local hospital have a diabetes dept. then? With mine, there’s a DSN number (diabetes specialist nurse) and you can leave a message for a callback from any DSN. Any of them should be able to offer you some advice to tide you over.
@rebrascora has explained a little above re the Novorapid. If it was me, I’d try some cautious experiments along those lines. Weigh your cereal and measure your milk in mls. Try to work out the total carbs if you can. Then take a cautious dose of the Novorapid before eating it. Test your blood sugar before your meal and two hours after. This will give you an idea about whether you took the correct amount of Novorapid. Eat the same cereal (measured as before) the next day and you’ll begin to get an idea of what dose works for that meal.
Always be cautious. You’re not aiming for perfect blood sugar, just to keep in in a reasonable broad range until you get help.
@rebrascora has explained a little above re the Novorapid. If it was me, I’d try some cautious experiments along those lines. Weigh your cereal and measure your milk in mls. Try to work out the total carbs if you can. Then take a cautious dose of the Novorapid before eating it. Test your blood sugar before your meal and two hours after. This will give you an idea about whether you took the correct amount of Novorapid. Eat the same cereal (measured as before) the next day and you’ll begin to get an idea of what dose works for that meal.
Always be cautious. You’re not aiming for perfect blood sugar, just to keep in in a reasonable broad range until you get help.
PattiEvans
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Hi there
I am not surprised that you were unable to contact 111. My own experience with them has been dismal as has that of a person I know.
I think that so far you've been given some good guidelines by @rebrascora and @Inka. However I think it would be very very helpful for you to understand the basics of MDI (Multiple Dose Injections) as to which insulin does what and how both will affect you. This is usually done by the diabetes specialist nurse at a hospital clinic, but it seems you have fallen through the cracks. I'd suggest a couple of really good books which would help you no end. The first is "Type 1 Diabetes in Children, Adolescents and young adults" by Ragnar Hanas (I don't have it but members here speak highly of it) the second is "Think like a Pancreas" by Gary Scheiner - I do have that book and it was absolutely indispensible for me.
If you don't hear anything about a carb counting course, there is a free online course you can do called "Bertie" which was written by the Diabetes and Endocrine team at Bournemouth hospital. Do have a go at that. Keep in touch and ask as many questions as you can think of! 🙂
I am not surprised that you were unable to contact 111. My own experience with them has been dismal as has that of a person I know.
I think that so far you've been given some good guidelines by @rebrascora and @Inka. However I think it would be very very helpful for you to understand the basics of MDI (Multiple Dose Injections) as to which insulin does what and how both will affect you. This is usually done by the diabetes specialist nurse at a hospital clinic, but it seems you have fallen through the cracks. I'd suggest a couple of really good books which would help you no end. The first is "Type 1 Diabetes in Children, Adolescents and young adults" by Ragnar Hanas (I don't have it but members here speak highly of it) the second is "Think like a Pancreas" by Gary Scheiner - I do have that book and it was absolutely indispensible for me.
If you don't hear anything about a carb counting course, there is a free online course you can do called "Bertie" which was written by the Diabetes and Endocrine team at Bournemouth hospital. Do have a go at that. Keep in touch and ask as many questions as you can think of! 🙂
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