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gll said:
hey Pearl. thanks for all that info, I know it was a lot. It makes it easier for everyone to be able to suggest what to advise you to ask seeing a more complete picture.
Also well done for overcoming the fear of needles 🙂
Big thumbs up that you have info and advice on checking for ketones and dealing with hypos. I know numbers aren't ideal at the moment but knowing what to do when high and low and is very important.

So am I right in saying your main issues are:
Your BG is all over the place and you feel abandoned and left in the dark?

So who to call. Is Grey Clinic the DSN team? If yes it is them who you should call and insist on either speaking to someone for advice there and then or ask for (demand) an appointment asap. If it isn't, ask them who is in charge of your ongoing care and get the contact number. Do not get off the phone without either a number to call or an appointment. If it is an answer service, of course leave a message and set a reminder to call again the following day if you haven't heard back. Keep calling them.

When asking for this I would mention that you are struggling with your insulin regime, your bg numbers are erratic between near hypo and hyper, you are stressed and anxious about everything and need to go over things again and see if there are any changes you should make at this point regarding doses (mention no one has explained adjusting dosages at all).
Have on hand: (in case you get to discuss things there and then)
The last 7 days worth of your readings that you were asked for (I am assuming pre meals x 3 and bedtime?) Ignore the other readings you may have EXCEPT for any readings 5 (or under) outwith your asked for testing.

They should be able to interpret your readings and see how your doses are going with each meal from that.

While you are not on the spot / on the phone, do you think counting carbs and injecting your novorapid to match the carbs would be more convenient than the fixed dose? You would be given a carb to insulin units ratio (or have to work it out). It is worth having a conversation with them about the possibility. You could bring up and see what kind of response you get.
Its sometimes good to have answers and make some decisions before you speak to folks so you don't get thrown by questions demanding answers.

You should 100% tell them that you are struggling to stick to set mealtimes but do let them know that sticking to you basal (lantus) times is not an issue.

I would also casually question why you are also on gliclazide on top of basal bolus insulin and see what they say about that. It does seem a little odd.

Please anyone throw in more things I have missed that should be asked.

@Purls of Wisdom hang in there, c-pep results might change the game but you should push now for support. They probably want you closer to 7 pre meals and not much lower so make sure they know you have been as low as you have.

Do let us know in this thread how you get on with contacting people. Again, more hugs x
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Thank you very much for a detailed response to my sorry state of affairs. I am going to take your advice on board and take matters in my hands.

My surgery is very good. I will have no problem contacting them for more support.
 
Purls of Wisdom said:
How important it is to take insulin on the same time every time? I still have not managed to accomplish that. I love my sleep, I always have. Waking up early and testing are manageable but eating breakfast is my second pet hate after the insulin administration. Having good days and bad days. Do I have any time frame in which it MUST be done? Or it should be observed in a regimented manner. Any input is welcome and highly appreciated
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Hi. Just reading through your post above, it sounds like perhaps you don't enjoy or want to eat breakfast. If that is the case, then you simple don't need to eat it and if you don't have breakfast, then you don't need to inject NovoRapid for it, so you can reduce your daily injections by one.
As regards other mealtimes, the beauty of the insulin regime you are on (a basal(Lantus)/bolus (NovoRapid) system is that you can eat whenever you want. You just need to inject 15-30 mins before you eat.
The only injection which needs to be reasonably routine time wise is your Lantus. If you can keep that to the same time of day plus or minus and hour that is ideal, but meal times can be whenever you want them or not at all if you don't fancy eating. The Novorapid is injected to deal with the glucose released by the food, so if you don't want to eat, you don't inject the NovoRapid.

I can't begin to imagine how difficult it has been for you to have to battle a needle phobia as well as be left mostly to your own devices as regards managing your diabetes in this early stage when everything is so scary and confusing.
Each surgery has a different set up. There is a practice nurse at my GP surgery who gets training/support from a DSN, and she oversees the diabetics at the practice. This was the person who supported me in the early days of starting on insulin and if she wasn't sure of anything, she was able to ring the DSN or consultant and get back to me. She was checking in with me every week in the early stages and adjusting doses occasionally in response to my BG test results. Unfortunately Covid has put an immense amount of strain of the diabetes clinicians at the hospitals and they are backlogged. It is not right that you have been left so long with almost no support and unfortunately you will need to push to get the help you need, but do be aware whilst it is frustratiing and frightening for you to be in this situation, many of the clinicians will be extremely stressed and upset at the poor service they are providing to some people.... I know my consultant is experiencing this and whilst he understands why people are complaining about lack of support, his department are swamped.
You will find a lot of information, support and practical experience here on the forum, so do ask as many questions here as you need to, to help you understand things as knowledge is power with diabetes and the more you understand it, the more confidence you will gain. Diabetes can be quite individual so there is an element of trial and error in finding what works for you.

Make sure you always have hypo treatments with you and close to hand AT ALL TIMES and test kit too, particularly by the bed at night. You do not want to be getting out of bed and wandering around the house in the middle of the night if your BG levels drop low.
Hypo treatment is usually 3 jelly babies or 4-5 glucose tablets or 150mls of full sugar coke etc.... these provide about 15g fast acting carbs) The rule is to test if you don't feel right or you feel wobbly. If you are below 4, eat or drink your hypo treatment, wait 15 mins and test again. If you are still below 4, eat another hypo treatment (ie 3 jelly babies) and wait another 15 mins and check your levels again. Once you come up above 4, it is advised to eat about10g of slower acting carbs. Something like a digestive biscuit or a small slice of wholemeal toast works well. I find that it really helps to divide up my hypo treatment into little portions in pots or little ziplock bags, so that I don't over eat because your body can crave when your levels drop low and it is far too easy to over treat a hypo and end up massively high afterwards.

Anyway, just wanted to make it clear that you don't need to eat at set times and you don't have to eat breakfast if you don't want to but obviously don't inject NovoRapid if you are skipping a meal. Hope that helps.

Good luck with getting more support from your clinic.
 
Purls of Wisdom said:
Thank you. My moniker reflects my love for knitting, very close to my heart, along with Cross stitching and now it is going to provide me with a well desired reprieve. Any other craft lovers on the forum? Would love to hear from them. Much love. X
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I make stained glass things, my picture is a dragonfly suncatcher that I made. The moniker is a play on words as I make lamps as well.
I used to like cross stich but I was never neat enough and could never get the hang of knitting.
 
rebrascora said:
Hi. Just reading through your post above, it sounds like perhaps you don't enjoy or want to eat breakfast. If that is the case, then you simple don't need to eat it and if you don't have breakfast, then you don't need to inject NovoRapid for it, so you can reduce your daily injections by one.
As regards other mealtimes, the beauty of the insulin regime you are on (a basal(Lantus)/bolus (NovoRapid) system is that you can eat whenever you want. You just need to inject 15-30 mins before you eat.
The only injection which needs to be reasonably routine time wise is your Lantus. If you can keep that to the same time of day plus or minus and hour that is ideal, but meal times can be whenever you want them or not at all if you don't fancy eating. The Novorapid is injected to deal with the glucose released by the food, so if you don't want to eat, you don't inject the NovoRapid.

I can't begin to imagine how difficult it has been for you to have to battle a needle phobia as well as be left mostly to your own devices as regards managing your diabetes in this early stage when everything is so scary and confusing.
Each surgery has a different set up. There is a practice nurse at my GP surgery who gets training/support from a DSN, and she oversees the diabetics at the practice. This was the person who supported me in the early days of starting on insulin and if she wasn't sure of anything, she was able to ring the DSN or consultant and get back to me. She was checking in with me every week in the early stages and adjusting doses occasionally in response to my BG test results. Unfortunately Covid has put an immense amount of strain of the diabetes clinicians at the hospitals and they are backlogged. It is not right that you have been left so long with almost no support and unfortunately you will need to push to get the help you need, but do be aware whilst it is frustratiing and frightening for you to be in this situation, many of the clinicians will be extremely stressed and upset at the poor service they are providing to some people.... I know my consultant is experiencing this and whilst he understands why people are complaining about lack of support, his department are swamped.
You will find a lot of information, support and practical experience here on the forum, so do ask as many questions here as you need to, to help you understand things as knowledge is power with diabetes and the more you understand it, the more confidence you will gain. Diabetes can be quite individual so there is an element of trial and error in finding what works for you.

Make sure you always have hypo treatments with you and close to hand AT ALL TIMES and test kit too, particularly by the bed at night. You do not want to be getting out of bed and wandering around the house in the middle of the night if your BG levels drop low.
Hypo treatment is usually 3 jelly babies or 4-5 glucose tablets or 150mls of full sugar coke etc.... these provide about 15g fast acting carbs) The rule is to test if you don't feel right or you feel wobbly. If you are below 4, eat or drink your hypo treatment, wait 15 mins and test again. If you are still below 4, eat another hypo treatment (ie 3 jelly babies) and wait another 15 mins and check your levels again. Once you come up above 4, it is advised to eat about10g of slower acting carbs. Something like a digestive biscuit or a small slice of wholemeal toast works well. I find that it really helps to divide up my hypo treatment into little portions in pots or little ziplock bags, so that I don't over eat because your body can crave when your levels drop low and it is far too easy to over treat a hypo and end up massively high afterwards.

Anyway, just wanted to make it clear that you don't need to eat at set times and you don't have to eat breakfast if you don't want to but obviously don't inject NovoRapid if you are skipping a meal. Hope that helps.

Good luck with getting more support from your clinic.
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Is it safe to miss an insulin dose without doctor's advice? Too scared to deviate from the watertight regime due to my zero knowledge. My only reason to eat at set times is to keep up with my work routine.
 
Leadinglights said:
I make stained glass things, my picture is a dragonfly suncatcher that I made. The moniker is a play on words as I make lamps as well.
I used to like cross stich but I was never neat enough and could never get the hang of knitting.
Click to expand...
I have my mum to thank for my love for crafts. ❤
 
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Purls of Wisdom said:
Is it safe to miss an insulin dose without doctor's advice? Too scared to deviate from the watertight regime due to my zero knowledge. My only reason to eat at set times is to keep up with my work routine.
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Hopefully others can reassure you that it is OK to skip meals if you don't fancy them as long as you don't inject insulin for them.
Can you explain a bit more about how your work routine causes difficulty with your meal times and diabetes? I read it that you felt you had to inject and eat at set times because of your diabetes but it sounds like maybe that is just a work issue and I have misunderstood.
 
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I certainly skip meals and so don't bolus. Sometimes, like today when I'm vigorously gardening, I actually take 2 or 3 snacks during the day without taking a bolus. BUT I have a Libre so I can monitor my BG without the constant finger picking.

My rule of thumb, based upon advice given in Gary Sheiner's book "Think Like a Pancreas" is that If I am going to bolus to make sure I have at least 30 gms of carbs. Anything less than 30 your body starts to convert proteins and that muddles up the counting. So I consider a meal must be greater than 30gms and so always bolus for however many carbs that I'm taking - starting at 30gns.

For example 30 gms could be a normal slice of bread or toast (say 16gms) with butter (free) and some peanut butter (too small to bother counting), a latte, (say 8gms for 170ml of milk, the coffee is free) and a medium kiwi or easy peeler orange (approx 6gms). Many packaged food items give typical carb values on the packaging. For me at a ratio of 1:10 for lunch or dinner, that 30 gms of carbs would need 3 units of NovoRapid.
 
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rebrascora said:
Hopefully others can reassure you that it is OK to skip meals if you don't fancy them as long as you don't inject insulin for them.
Can you explain a bit more about how your work routine causes difficulty with your meal times and diabetes? I read it that you felt you had to inject and eat at set times because of your diabetes but it sounds like maybe that is just a work issue and I have misunderstood.
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Hello Barbara. You have certainly misunderstood. I work with young kids mainly 6 years old. My breaks are at certain times of the day, everyday. In order to have my lunch, 30mins, I ve to take insulin 15 mins before meal time. It means I ve to leave my duty of supervising the pupils 15 mins before their lunch time ends. I have a very understanding and supporting management team. They will go out of their way to accommodate me and my new ailment. No problem there.

I was under the impression that insulin needs to be taken at same time of the day, hence started the new routine keeping my break times in mind.

Hope all this makes sense be it little. I must thank you for your dedication and quick responses. Great help for someone like me.
 
Great to hear that your management are making reasonable adjustment for you to do your injections in advance of meals at work, although it is important to know that they are required to do so by law.
When not at work you can eat whenever you like and it is only the Lantus injection which needs to be taken at (more or less) the same time each day.
The older insulin regimes involving mixed insulin needed to be taken at set times and meals needed to be eaten at set times and set amounts of carbs, but the insulin regime you have been given allows you to eat (or not eat ie skip meals) whenever you want. Some days I just have one meal a day, sometimes 2 and sometimes 3. As a result, some days I can get away with just 2 injections a day. This system allows you much more flexibility to live life in your own way.
 
One small caveat, @Purls of Wisdom; people on Multiple Daily Injections (MDI) - you and I - are generally advised to avoid "stacking" our bolus insulin. This means not taking a new bolus, while your body retains residual bolus from the previous dose. Having stacked insulin can cause a risk of unexpected hypos and while I have Libre so can get frequent, quick and non-intrusive BG readings plus trend indication, for you on finger pricking only this is difficult to foresee and not realistic to 'second guess'.

Since our NovoRapid insulin lasts between 4-5 hrs each time, that means separating meal bolus jabs, by at least 4 hrs and I set 4 1/2 hrs as my minimum. So, you might want to make sure there is a minimum of 4+ hrs between your breakfast and lunch pre-boluses.

With experience + Libre people do stack insulin, but I personally will not and certainly would want you to be aware of this risk. If I've got things awry, and I'm higher than I want, I still won't correct (ie more bolus) until my 4.5hrs have elapsed. Being high for a couple of hours is not a serious problem; it's when that sustains for days or weeks that there can be serious medical consequences. But some find being high makes them feel "off", perhaps lethargic or out of kilter in different ways. I happen to not feel unduly different when I'm above 10. We're all different.

Please don't let this alarm you; it's just one of the many oddities about DM and as time goes by and your knowledge increases, you'll find it easy to take these things in your stride.
 
@Proud to be erratic whilst stacking insulin can be risky in terms of hypos, separating meals (and snacks) by 4.5 hours is not necessary.
What is important is being aware of "Insulin On Board" (still acting fast acting insulin) if you are making corrections.
Most calculators assume insulin has a constant profile - a quarter of your dose is used up in the first hour, a half after 2 hours, etc. As the true profile is a front loaded peak, this is a conservative approach.
If you are not making corrections, provided you carb count, you can have carby snacks between meals and dose for them.

I have always been a grazer rather than someone who eats 3 large meals a day and have followed this approach for nearly 20 years without any issues.
There again I am stubborn and feel diabetes needs to work around me rather than the other way around.
 
helli said:
@Proud to be erratic whilst stacking insulin can be risky in terms of hypos, separating meals (and snacks) by 4.5 hours is not necessary.
What is important is being aware of "Insulin On Board" (still acting fast acting insulin) if you are making corrections.
Most calculators assume insulin has a constant profile - a quarter of your dose is used up in the first hour, a half after 2 hours, etc. As the true profile is a front loaded peak, this is a conservative approach.
If you are not making corrections, provided you carb count, you can have carby snacks between meals and dose for them.

I have always been a grazer rather than someone who eats 3 large meals a day and have followed this approach for nearly 20 years without any issues.
There again I am stubborn and feel diabetes needs to work around me rather than the other way around.
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Thank you @helli . Particularly for introducing (and reminding me) of the phrase 'insulin on board'; all part of the DM vocabulary confusions (until one is familiar with all of this stuff!).

Currently, as I understand from this thread and @Purls of Wisdom first post (Caught unguarded), she is on defined fixed MDI and I suspect not yet doing much carb counting. I'm not clear if corrections are even part of her DM management yet, but they could be - judging by this morning's post in the 7 day waking average thread, recovering from 14 at bedtime to 7 this morning. So a simple starting process, which includes not having to consider insulin on board, is not such a bad thing. Indeed, a little earlier in this thread, @Purls of Wisdom told us she was concerned about any deviating from the fixed regime she'd been given.

You have been doing this for years and know how your body reacts; I am still learning about my boundaries and still getting erratic and unforeseen BG behaviour. Yesterday, away from home, was a brilliant example of that!! Weather, strenuous gardening for my daughter, imprecise and interrupted main meals all conspired to cause some chaos. Fortunately, this no longer panicked me, just very frustrating.

There are many aspects of DM management I still need to understand and thus learn from, but doing this one step at a time seems to make sense to me. Also, since each individual's metabolic management of food and insulin will vary, some caution at first seems sensible.

But following your observations I may well start relaxing my 4.5 hr rule - now I feel happier about what I'm doing and why.
 
That C-peptide test - not every hospital laboratory does this test, in which case it has to be frozen fairly immediately, then sent away to one that does. This test takes some time to do because there are just various stages they have to plod through with it - not because they haven't bothered. Sometimes it can be a few weeks before the results come back to the doctor.

However - it is that test (and another one for GAD antibodies but that one comes back in a day or so) which will inform them whether you have Type 1 or Type 2 diabetes. Sooooo - you just have to be a patient patient to find out! - and I'm patiently waiting with you - we all are!

Insulin - first thing to learn is that every cell in the body needs insulin constantly in order to function properly, even when asleep. Without it, nowt like eg your heart, lungs, liver or brain etc, can work.

That Lantus one, the longer acting insulin once a day - is what is officially called a Basal insulin. The idea is that it works all day and night, keeping your body's background need for insulin stable in between you either moving about (virtually at all!) or eating anything, literally at all. We all move fairly constantly even when asleep in bed, we still turn over etc even if we don't have to get up for the loo or anything else. It should still keep our blood glucose stable throughout if it's precisely the right dose at the right time. Precision is extremely tricky though especially in the early stages so both dose and timing of it, are informed guesses by the doctors. Over the months - and years! - doses and timing can be adjusted to provide a more optimal balance between dose/time and need. Because none of us has the same body as anyone else in the world, this is completely individual to each person. Just because I need X and eg @helli needs Y, does not mean you will. We each need however much we need, at whatever time(s) of day we happen to need it !

This takes time, and you have time. Now you have half a diagnosis and some tools - ie insulin - whilst no you won't be feeling 100% yet - you are not likely to drop dead suddenly, not from diabetes, anyway.

If you don't want to eat brekkie - and it's your normal routine not to eat it - don't! - and so, no need to jab Novorapid, which is only to account for the carbohydrates in the food you are about to eat.

Finally for now, ring that hospital clinic and say you need help! - if you don't tell em, they aren't telepathetic, so won't know!
 
rebrascora said:
Great to hear that your management are making reasonable adjustment for you to do your injections in advance of meals at work, although it is important to know that they are required to do so by law.
When not at work you can eat whenever you like and it is only the Lantus injection which needs to be taken at (more or less) the same time each day.
The older insulin regimes involving mixed insulin needed to be taken at set times and meals needed to be eaten at set times and set amounts of carbs, but the insulin regime you have been given allows you to eat (or not eat ie skip meals) whenever you want. Some days I just have one meal a day, sometimes 2 and sometimes 3. As a result, some days I can get away with just 2 injections a day. This system allows you much more flexibility to live life in your own way.
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Thank you for clearing things for my benefit. As they say, knowledge is power.
 
Re reading some of the earlier messages and making more sense out of the same. Another question which intrigues me is how important it is to wear a DM identification badge? I knew a gentleman who was escorted out of the plane and restrained, wrongly thought of as he had over indulged during the long flight. The reality was that poor man was suffering a Hypo and very sadly lost his life at the Airport only. Although this happened a long time ago but I still remember it. Any thoughts?
 
I think whether to wear something which identifies you as a diabetic is a personal matter.
I am too vain to have it on display if I wore such a thing and hate the idea of others making stereotypical assumptions based upon it.
However, I wear an insulin pump and CGM plus always carry dextrose with me so I feel I am suitably labelled
 
Yeah it probably is a personal thing for me I like it wear a wrist out and about incase anything was to happen.
 
I got these:
https://www.etsy.com/uk/listing/695816660/personalized-silicone-wristband-hidden
its not on full display but the info is on the inside of the band if anyone needs to see it.
The seller has a lot in her store if you don't like the silicon band and there are plenty of hidden ones available if you hunt about. I'm just allergic to a ton of stuff so it works for me x
I also have an ICE app on my phone with info showing on the lock screen
 
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