Insulin

[Purls of Wisdom]

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.

 

[Pumper_Sue]

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.

Can you tell us what insulin you are on as this will be dependant on the reply 🙂

 

[Robin]

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.

Looking at your original thread, you are taking Lantus and Novorapid.
Lantus should be taken around the same time each day, as it is supposed to last 24 hours (some people find it does run out a bit early). But you can take it at whatever time of day suits you best, provided it’s regular. Some take it in the morning, some in the evening.
Novorapid is designed to be taken just before a meal, so it deals with the carbs in the food you are about to eat, so it really doesn’t matter if you eat at different times on different days, you just inject about 10 minutes before you are due to eat.

 

[Proud to be erratic]

NovoRapid, your bolus insulin, is normally taken as a pre-bolus, ie before meals. Many people find that their body's natural (inbuilt) resistance to insulin varies with the time of day and generally is a fair bit longer at breakfast time than in the evening. Possibly it's a simple explanation that as your day progresses your muscles do more work and generally your body adjusts to needing insulin more rapidly; possibly there is a more complex explanation.

Also, your natural resistance can change depending on how high your BG is at the time of taking insulin.

I need to pre-bolus 45mins before breakfast, 20-30 mins before lunch and 10-20 mins before my evening meal. If my BG is above 8, I include a correction in my food bolus dose and if above 10 the pre-bolus time gets longer; when in the teens I simply won't get a recovery to below 8 if I eat too soon. So I now wait until I'm back below 8 before eating, which can take a very long time. It is not unknown for my wife and I to eat the same meal over an hour apart. Frustrating, but necessary!

Fortunately I have Libre, so can monitor my BG painlessly and frequently. This would be a real challenge if finger pricking. It is aspects like this (getting the timing right) that are barely considered for T2s - but should be and if they were would unquestionably justify all insulin dependents routinely being offered Libre.

 

[martindt1606]

NovoRapid, your bolus insulin, is normally taken as a pre-bolus, ie before meals. Many people find that their body's natural (inbuilt) resistance to insulin varies with the time of day and generally is a fair bit longer at breakfast time than in the evening. Possibly it's a simple explanation that as your day progresses your muscles do more work and generally your body adjusts to needing insulin more rapidly; possibly there is a more complex explanation.

Also, your natural resistance can change depending on how high your BG is at the time of taking insulin.

I need to pre-bolus 45mins before breakfast, 20-30 mins before lunch and 10-20 mins before my evening meal. If my BG is above 8, I include a correction in my food bolus dose and if above 10 the pre-bolus time gets longer; when in the teens I simply won't get a recovery to below 8 if I eat too soon. So I now wait until I'm back below 8 before eating, which can take a very long time. It is not unknown for my wife and I to eat the same meal over an hour apart. Frustrating, but necessary!

Fortunately I have Libre, so can monitor my BG painlessly and frequently. This would be a real challenge if finger pricking. It is aspects like this (getting the timing right) that are barely considered for T2s - but should be and if they were would unquestionably justify all insulin dependents routinely being offered Libre.

Proud to be Erratic - When my BS first went really erratic 3.5 years after my TP, my Diabetic Support (following discussion with cancer team) applied for a Pump under a discretionary budget. I've since progressed to pump integrated with CGM. Once you have done an apprenticeship to understand living like a T1, I believe all who have gone through a Total Pancreatectomy should be offered the "artificial" pancreas as part of the standard care plan. Dexcom G6 and Tandem Tslim IQControl is a game changer. Just wish they would hurry up and release a dual pump to reduce the reliance on haribo when BS starts to fall.

 

[Purls of Wisdom]

Can you tell us what insulin you are on as this will be dependant on the reply 🙂

Novorapid 3+3+4 before mealtimes and Lantus 12 units before bedtime. 2x2 Gliclazide too. Thanks.

 

[Pumper_Sue]

Novorapid 3+3+4 before mealtimes and Lantus 12 units before bedtime. 2x2 Gliclazide too. Thanks.

As I understand it Lantus can be an hour late if need be.
Your Novrapid needs to be taken 15 - 30 mins before you eat so basically any time you eat 🙂
I don't eat breakfast hence I don't bolus in the morning.
Hope that helps

 

[Proud to be erratic]

Proud to be Erratic - When my BS first went really erratic 3.5 years after my TP, my Diabetic Support (following discussion with cancer team) applied for a Pump under a discretionary budget. I've since progressed to pump integrated with CGM. Once you have done an apprenticeship to understand living like a T1, I believe all who have gone through a Total Pancreatectomy should be offered the "artificial" pancreas as part of the standard care plan. Dexcom G6 and Tandem Tslim IQControl is a game changer. Just wish they would hurry up and release a dual pump to reduce the reliance on haribo when BS starts to fall.

Thank you, most useful. At my recent Endo consult I asked about moving to a pump and he asked me to hold off for a bit longer while I continued to find more stability; I was content to accept that.

But I completely agree with you; it's essential to do that apprenticeship on MDI (just as it is to be comfortable about finger pricking when the CGM tech fails); and then the tech that provides the artificial pancreas should be automatically offered, rather than something to be 'fought' for. Not everyone will want to go that route and fair enough; but ....

 

[DaveB]

Novorapid 3+3+4 before mealtimes and Lantus 12 units before bedtime. 2x2 Gliclazide too. Thanks.

Two points. You should shortly be carb-counting and altering your Bolus dose to suit the carbs in the meal and not having a fixed dose; doing this can give better overall control. I see on another post that you have only recently started insulin so that may explain where you are currently. Also, it's not normal to be on insulin and Gliclazide together as they both enable the body to produce or have more insulin and the injected insulin covers that. Do discuss with your doctor.

 

[trophywench]

Two points. You should shortly be carb-counting and altering your Bolus dose to suit the carbs in the meal and not having a fixed dose; doing this can give better overall control. I see on another post that you have only recently started insulin so that may explain where you are currently. Also, it's not normal to be on insulin and Gliclazide together as they both enable the body to produce or have more insulin and the injected insulin covers that. Do discuss with your doctor.

Yep - if you are Type 1 that means your pancreas has stopped producing sufficient insulin for your body. Hence, complete waste of time taking a drug (ie the Gliclazide) that encourages your pancreas to pump out more insulin!

 

[Purls of Wisdom]

Two points. You should shortly be carb-counting and altering your Bolus dose to suit the carbs in the meal and not having a fixed dose; doing this can give better overall control. I see on another post that you have only recently started insulin so that may explain where you are currently. Also, it's not normal to be on insulin and Gliclazide together as they both enable the body to produce or have more insulin and the injected insulin covers that. Do discuss with your doctor.

That is what I am faced with. No support as assured by the hospital. No one, I mean no one has gone over carb counting and adjusting the Insulin accordingly. It is a frightening ailment as it is and I am left to my own devices to deal with it. Does not help me being anxious and scared and frustrated. You are the second person who has mentioned that Gliclazide and insulin should not be taken together. I was put on Metformin too but stopped cos GI issues. Gliclazide and insulin are prescribed by the Consultant only. I do not know what to do and who to ask for help and how? It is rather tricky to get to speak to a GP. Most of them are locum doctors so one never gets the same doctor twice. Over 3 weeks since diagnosis but the type is yet to be confirmed. What to do?

 

[Purls of Wisdom]

Yep - if you are Type 1 that means your pancreas has stopped producing sufficient insulin for your body. Hence, complete waste of time taking a drug (ie the Gliclazide) that encourages your pancreas to pump out more insulin!

Would you consider 3 weeks time since diagnosis as early days?

 

[helli]

Would you consider 3 weeks time since diagnosis as early days?

Absolutely.
My honeymoon period (time that my pancreas produced some insulin after diagnosis) lasted 8 years. During that time, my insulin dose slowly rose.

I was on fixed insulin dose for about a year before I was taught carb counting. Some clinics teach it earlier but at 3 weeks after diagnosis I would not expected to know everything about managing Type 1 diabetes.mI still don’t and I was diagnosed 18 years ago.

 

[Leadinglights]

Would you consider 3 weeks time since diagnosis as early days?

It is early days which is why you should be getting a lot more support to help you find out what is right for you and give you the tools to take control over your condition. You need to be more insistent with your clinic about having the support.

 

[gll]

Purls, I totally understand where you are at with all this (and big hugs to you).

Just to establish some things:

• Who diagnosed you with diabetes? And what happened after diagnosis in terms of the healthcare teams you have spoken to yourself either on the phone or in person? Did any person speak to another person on your behalf? (e.g. GP, Diabetes Nurse, Consultant etc)
• What info sheets were you sent away with along with insulin/prescription for insulin?
• Did they ask you to test at any particular times so you can give them readings to indicate how things are going?
• Last time you spoke to them, what exactly did they say regarding follow ups.
• Did they do the bloods to test type? (maybe they are going to just wait for those results?)

Go back through all paperwork again and see if there's anything you missed in there (happens to the best of us). Do you also have any referral letters with contact info on. It is unlikely the GPs will do much besides helping you find out who to speak to.
I'm not trying to imply you are doing anything wrong here at all, I know my brain goes out the window at appointments (and others too) which is why they usually send out or hand you some paperwork to refer back to.

Lets see what facts you have and what's been asked of you and we can maybe help put together some questions to ask them and talking points to get the answers and things you need to fill in the gaps. Going in with structured questions can help massively, especially when you are understandably anxious about it all.
We can maybe try and work out where to start to figure out who to contact if you can't find anything (depending on how it all came about).

The last question is what kind of numbers are you seeing when testing now (ie general lowest and highest). Just to make sure nothing is super medically urgent and you need to talk to people out of hours.

Again, big hugs. Lets come up with a plan. You aren't alone in this x

 

[Purls of Wisdom]

Purls, I totally understand where you are at with all this (and big hugs to you).

Just to establish some things:

• Who diagnosed you with diabetes? And what happened after diagnosis in terms of the healthcare teams you have spoken to yourself either on the phone or in person? Did any person speak to another person on your behalf? (e.g. GP, Diabetes Nurse, Consultant etc)
• What info sheets were you sent away with along with insulin/prescription for insulin?
• Did they ask you to test at any particular times so you can give them readings to indicate how things are going?
• Last time you spoke to them, what exactly did they say regarding follow ups.
• Did they do the bloods to test type? (maybe they are going to just wait for those results?)

Go back through all paperwork again and see if there's anything you missed in there (happens to the best of us). Do you also have any referral letters with contact info on. It is unlikely the GPs will do much besides helping you find out who to speak to.
I'm not trying to imply you are doing anything wrong here at all, I know my brain goes out the window at appointments (and others too) which is why they usually send out or hand you some paperwork to refer back to.

Lets see what facts you have and what's been asked of you and we can maybe help put together some questions to ask them and talking points to get the answers and things you need to fill in the gaps. Going in with structured questions can help massively, especially when you are understandably anxious about it all.
We can maybe try and work out where to start to figure out who to contact if you can't find anything (depending on how it all came about).

The last question is what kind of numbers are you seeing when testing now (ie general lowest and highest). Just to make sure nothing is super medically urgent and you need to talk to people out of hours.

Again, big hugs. Lets come up with a plan. You aren't alone in this x

A massive thank you, Gll, for understanding my confusion and helplessness.
I had been showing signs of something sinister for a couple of weeks. GP requested tests. The blood test results came back on the same afternoon. GP called me back. Did a dipstick test for Ketones. Her first diagnosis was T1 and insulin. Sent me to hospital so that they can have a look too. Dehydrated, BG over 30, Ketones over borderline 1.3 and HbA1c 99 at admission. Got transferred to the ward after spending a day at the immediate assessment unit.
I have a needle phobia. The mere thought of insulin scared me to death. Finally I had to overcome my fears and it wasn't easy.

Upon discharge from the hospital, laced with insulin and Gliclazide plus machines, I was given a 4 sheets long discharge letter. I read my summary and googled fancy med terms in order to make sense. No other paper work bar a contact number for DCN. Did not hear a thing. When I called, I was told, but you ve just come out of the hsp. A booklet and a diet sheet was posted to me. I called again but have not heard from them. In despair, I called GP. She contacted the Dis Nurse who called straight away. She could only help so much as I am not under her care. Fair enough.
Most of the info was verbal. What to do if BG readings are over 14. Ketones over 1.5 and Hypo of course.Call Grey Clininc if need be. They are going to look after me from now.

I am advised to check for BG levels 4 times a day. And Novorapid 15 mins before meal times and Lantus at bed time. Readings range between 18.4 and 4.1
The bloods have gone for further detailed testing. C peptides? Takes time.
All I am told is that various appointments will follow.
Apart from the initial shock, I started to scrutinise everything I ate. Could not make sense what to eat or not. Certain foods are good but do not overdo. I had no idea about the portion sizes. Hesitantly leant towards Google, information overload.

All this has knocked my confidence off its rails. Added to anxiety and negativity. I am still off work, also recommended by the hsp nurses. Blurred vision thrown in the mix.
The one and only positive thing I can think of is that I do not need to loose weight. At 57kg, my BMI is good.

I do not think I ve missed out on anything. Thanking you for taking time out for me. Much appreciated.

 

[Proud to be erratic]

Hello @Purls of Wisdom , love your moniker!

I can't help you at all, my DM is different and I'm in England. But I read your post late last night and felt really bad for you - yet not much to offer to help. Anyway you've got @gll on your case, and as she said you're not alone while you are on this forum.

DM is complicated, confusing and contradictory - and at first very frightening. As you find out more and understand more it does get easier. Knowledge helps dispel the fear. Good luck.

 

[DaveB]

Hi again. You are in a difficult position. Does your surgery have a good nurse who covers diabetes? I'm lucky as our surgery has a super nurse and they often know more about diabetes than the GPs. When I wanted a C-Peptide test my nurse referred me to the NHS Community diabetes clinic and after some hassle I am also now on their system for support. I wonder whether you have a diabetes clinic separate from the hospital you mention? Also surgeries are increasingly being grouped together as PCNs (mine is one of three in our PCN). This can give access to more specialist support as you can ask to go to one of the other surgeries if that support is needed and available.

 

[gll]

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

 

[Purls of Wisdom]

Hello @Purls of Wisdom , love your moniker!

I can't help you at all, my DM is different and I'm in England. But I read your post late last night and felt really bad for you - yet not much to offer to help. Anyway you've got @gll on your case, and as she said you're not alone while you are on this forum.

DM is complicated, confusing and contradictory - and at first very frightening. As you find out more and understand more it does get easier. Knowledge helps dispel the fear. Good luck.

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