Trying to resolve issues I,m now having after 26 years, type one Diabetic ?!

[1nick]

To Friends/Colleges

I was a 52 years of age, weighing 74kg, an active guy who does 4-5 blood tests a day.

I used to be on Lantus (night) and Humalog (day).
Taking 32 units of Lantus (night) and not being a person who needs breakfast. Before I drive to work I test my blood to be above 6 and enjoy a break at 10:00 with a roll (many different fillings) with 1 packet of crisps, taking 2 units of Humalog (bearing in mind the seasons different temperatures). Two rolls, a wafer biscuit, fruit pie (Mr Kipling's), a macaroon with a yogurt at 13:00, taking 4- 6 units of Humalog. Evening meals has been a mixture, where 8-12 units of Humalog have been taken. This has been a regular pattern.
What has changed in the last 18 months, which I'm seeking anyone's advice about?

At 54, I am facing my own questions .... Lantus I believe has become overpowering to my day time Humalog insulin, as I was not requiring the dosage as above but a lot less or none at tall during the working day?! Humalog was required with my evening meal.

Now, I have been moved onto Tresiba (Night). This I started with a dosage of 22 units but having blood readings of 14-16 at 4:00 and requiring to urinate, I raised this to 24 units over three days but the same again has happened as Lantus? Even though its a lower dosage than Lantus, it has taken over from Humalog again, where I have taken little or no units of Humalog, until my evening meal where I return to using Humalog?!
Please understand I have since lowered my Tresiba to 23 units, where my blood readings are now between 9 -12 rather than 4 - 6.

Being 54, my body requires me to start Saturday and Sundays games of football with a blood level of 12, allowing me to finish a 90 minute game with a blood reading of 6.

My questions are ...... what is happening to me?

1. I have always been advised that daytime and nighttime insulins should be equal, Which I
am now having problems maintaining? Why
1. Have my body functions now changed in some way, if so please explain this to me in
detail?
2. What is the difference between Lantus and Tresiba ? Understanding that I use 9 units less
of Tresiba, I would like to know a lot more about the two night time insulins?

Truly lost with what is happening and having needed assistance to my needs, where I entered a Hypo, just before my 10:00 break this week. It would be most helpful to hear comments from others.

Many Thanks
Nick

 

[grovesy]

Welcome.
Unable to help with the Insulin query as i am not on Insulin. Though i am sure someone will be along who does.

 

[khskel]

Hi there @1nick. I'm a relative newbie of 2 1/2 years or thereabouts. Have you done any fasting basal testing to check that you're on the right amount of basal insulin? I can't help you with the difference between the two insulins as I've used neithet

 

[Wirrallass]

Hi Nick - and a very warm welcome to the forum. Like @grovesy I am type2 and not on insulin so I'm sorry I can't help you either but there will be other T1's soon to hopefully answer your questions, take care.

Dx Type 2 April 2016
Metformin withdrawn
Diet control and exercise only

 

[Steff]

Hi and welcome

 

[stephknits]

I don't see why you would need to do the same amount of background morning and evening. I dont, but i am on Levemir, so not sure about the others. Welcome, by the way!

 

[Robin]

Hello Nick, and welcome to the forum. I'm a bit puzzled, you refer to Lantus and Tresiba as 'night time insulin' Is this just because you inject them at bedtime? Because both insulins should last for 24 hrs, giving you a drip feed of insulin the whole time, to deal with the trickle of Glucose that your liver pumps out 24hrs a day to keep your brain, heart, lungs etc ticking over. Then your Mealtime insulin should only deal with what you've just eaten.
Tresiba is supposed to have a smoother profile throughout the 24 hrs than Lantus. (I'm on Lantus)

 

[1nick]

Hello Nick, and welcome to the forum. I'm a bit puzzled, you refer to Lantus and Tresiba as 'night time insulin' Is this just because you inject them at bedtime? Because both insulins should last for 24 hrs, giving you a drip feed of insulin the whole time, to deal with the trickle of Glucose that your liver pumps out 24hrs a day to keep your brain, heart, lungs etc ticking over. Then your Mealtime insulin should only deal with what you've just eaten.
Tresiba is supposed to have a smoother profile throughout the 24 hrs than Lantus. (I'm on Lantus)

Hi Robin and thanks for your post.
It is that I do my long acting insulin at 10:00pm and have always done this, which has kept me in check but over the last 18 months things have changed. Which I am not getting any answers for? Such as yours ...... telling me that Tresiba has a smoother profile.

Many thanks for your comment about Tresiba Robin. With further thanks also to Grovesy, Wirralas, Stef & Stephknits for their welcome.

 

[1nick]

Hi there @1nick. I'm a relative newbie of 2 1/2 years or thereabouts. Have you done any fasting basal testing to check that you're on the right amount of basal insulin? I can't help you with the difference between the two insulins as I've used neithet

To Khsket

I believe you are using a pump with your insulin dosage and you have the ability to adjust during times you require?
If I'm correct or I have something wrong here ..... please reply.
I have checked that my blood sugars are not rising/lowering at 4:00am for a week, with no signs of change at this 4:00am time.

Regards
Nick

 

[trophywench]

Hi Nick

Well - it's like this - basal requirements change 'all the while' - they never ever stay the same 'forever' - we need less eg in hot weather, or when taking exercise and more when the weather's cooler or we have some other illness, or stress. Girls get used to this quite early on as female hormones play havoc on a roughly monthly basis - and if girls ever get pregnant - sheer hell at St Trinian's mate. Plus, just do exactly the same every single day for 6 months at an ambient temperature of exactly the same every day - and after 1, 2. 3, 4, 5 or 6 months, we'll still need more or less!

It simply happens and it doesn't matter a fig how old we are, what exercise we do or don't take, whether the moon's in Aquarius or has turned blue - our needs simply CHANGE. And so - we have to respond to our bodily changes, by making changes to our insulin doses to cover whatever it is.

Do some proper basal testing - http://www.diabetes-support.org.uk/info/?page_id=120 - then when you've eventually got 24 hours results - see if that throws any light on the matter of what your body's doing and when it does it.

Incidentally - 2.30 - 3.30 am -ish is usually when everyone's BG is at the lowest - A&E medics call it the Suicide Hour - cos it is. Hence injecting Lantus at 10pm is almost bound to cause problems at about that time, since Lantus peaks after 5 - ish hours .......

My last lot of long-acting basal insulin before I started pumping was Levemir, which was designed to be taken as a split dose. 14 or 15u when I got up in the morning, approx. 07.00 to 07.30 and another 4 or 5u at night at 9.30 to 10pm - I used to take it about 11 when we went to bed, but always hypoed approx. 5.30 to 6 am. However my BG actually rises for a couple of hours between 10pm and 1am - so jabbing it in that bit earlier sorted that out and it stopped the hypos too, at the same time.

We regularly used to visit southern Crete in either May or September - still red hot - and our daytime activity was pegging our bodies out on a beach and trying to turn an even shade of walnut. Admittedly - it was about a 10-15 minute walk to our beach. For the first week - I wouldn't need to bolus for breakfast after the first day in resort (huge croissants and jam) lunch (a big fat filled bread roll) or the afternoon treat of a huge doughnut filled with either jam, sweet stewed apple or Nutella. I did however need a jab before dinner. This always wore off after a week though, as my body adjusted to the temperature, and gradually I had to stop having such a carb fest, and jab for everything as per normal.

 

[KookyCat]

Hi Nick
It sounds to me like you've got far too much basal in your system and that's the root of your issue. It sounds like you need to reassess your food based insulin too though which can get complicated. Who provides your diabetes care, is it a GP surgery or do you have a clinic? Do you use ratios for food (carb count) or are you using fixed doses? When did the issues start, before or after you switched to Tresiba? Sorry to ask so many questions, insulin is a tricky area and it's good to have a bit of context 🙂

 

[khskel]

To Khsket

I believe you are using a pump with your insulin dosage and you have the ability to adjust during times you require?
If I'm correct or I have something wrong here ..... please reply.
I have checked that my blood sugars are not rising/lowering at 4:00am for a week, with no signs of change at this 4:00am time.

Regards
Nick

Morning @1nick. I'm a common or garden insulin stabber but even in my short sojurn in the D universe my basal requirements have ranged from 16 units to zero per day. Currently on 5 in the evening and 3 in the morning. At the moment that keeps me quite level but I will test again in a few weeks to see if adjustment needed.

 

[1nick]

Hi Nick

Well - it's like this - basal requirements change 'all the while' - they never ever stay the same 'forever' - we need less eg in hot weather, or when taking exercise and more when the weather's cooler or we have some other illness, or stress. Girls get used to this quite early on as female hormones play havoc on a roughly monthly basis - and if girls ever get pregnant - sheer hell at St Trinian's mate. Plus, just do exactly the same every single day for 6 months at an ambient temperature of exactly the same every day - and after 1, 2. 3, 4, 5 or 6 months, we'll still need more or less!

It simply happens and it doesn't matter a fig how old we are, what exercise we do or don't take, whether the moon's in Aquarius or has turned blue - our needs simply CHANGE. And so - we have to respond to our bodily changes, by making changes to our insulin doses to cover whatever it is.

Do some proper basal testing - http://www.diabetes-support.org.uk/info/?page_id=120 - then when you've eventually got 24 hours results - see if that throws any light on the matter of what your body's doing and when it does it.

Incidentally - 2.30 - 3.30 am -ish is usually when everyone's BG is at the lowest - A&E medics call it the Suicide Hour - cos it is. Hence injecting Lantus at 10pm is almost bound to cause problems at about that time, since Lantus peaks after 5 - ish hours .......

My last lot of long-acting basal insulin before I started pumping was Levemir, which was designed to be taken as a split dose. 14 or 15u when I got up in the morning, approx. 07.00 to 07.30 and another 4 or 5u at night at 9.30 to 10pm - I used to take it about 11 when we went to bed, but always hypoed approx. 5.30 to 6 am. However my BG actually rises for a couple of hours between 10pm and 1am - so jabbing it in that bit earlier sorted that out and it stopped the hypos too, at the same time.

We regularly used to visit southern Crete in either May or September - still red hot - and our daytime activity was pegging our bodies out on a beach and trying to turn an even shade of walnut. Admittedly - it was about a 10-15 minute walk to our beach. For the first week - I wouldn't need to bolus for breakfast after the first day in resort (huge croissants and jam) lunch (a big fat filled bread roll) or the afternoon treat of a huge doughnut filled with either jam, sweet stewed apple or Nutella. I did however need a jab before dinner. This always wore off after a week though, as my body adjusted to the temperature, and gradually I had to stop having such a carb fest, and jab for everything as per normal.

 

[1nick]

Hi Nick

Well - it's like this - basal requirements change 'all the while' - they never ever stay the same 'forever' - we need less eg in hot weather, or when taking exercise and more when the weather's cooler or we have some other illness, or stress. Girls get used to this quite early on as female hormones play havoc on a roughly monthly basis - and if girls ever get pregnant - sheer hell at St Trinian's mate. Plus, just do exactly the same every single day for 6 months at an ambient temperature of exactly the same every day - and after 1, 2. 3, 4, 5 or 6 months, we'll still need more or less!

It simply happens and it doesn't matter a fig how old we are, what exercise we do or don't take, whether the moon's in Aquarius or has turned blue - our needs simply CHANGE. And so - we have to respond to our bodily changes, by making changes to our insulin doses to cover whatever it is.

Do some proper basal testing - http://www.diabetes-support.org.uk/info/?page_id=120 - then when you've eventually got 24 hours results - see if that throws any light on the matter of what your body's doing and when it does it.

Incidentally - 2.30 - 3.30 am -ish is usually when everyone's BG is at the lowest - A&E medics call it the Suicide Hour - cos it is. Hence injecting Lantus at 10pm is almost bound to cause problems at about that time, since Lantus peaks after 5 - ish hours .......

My last lot of long-acting basal insulin before I started pumping was Levemir, which was designed to be taken as a split dose. 14 or 15u when I got up in the morning, approx. 07.00 to 07.30 and another 4 or 5u at night at 9.30 to 10pm - I used to take it about 11 when we went to bed, but always hypoed approx. 5.30 to 6 am. However my BG actually rises for a couple of hours between 10pm and 1am - so jabbing it in that bit earlier sorted that out and it stopped the hypos too, at the same time.

We regularly used to visit southern Crete in either May or September - still red hot - and our daytime activity was pegging our bodies out on a beach and trying to turn an even shade of walnut. Admittedly - it was about a 10-15 minute walk to our beach. For the first week - I wouldn't need to bolus for breakfast after the first day in resort (huge croissants and jam) lunch (a big fat filled bread roll) or the afternoon treat of a huge doughnut filled with either jam, sweet stewed apple or Nutella. I did however need a jab before dinner. This always wore off after a week though, as my body adjusted to the temperature, and gradually I had to stop having such a carb fest, and jab for everything as per normal.

Hi Jenny
Thanks for your comments and I wish that I had time to do some proper basal testing now, as this is something I must do. Reading into the testing I believe it will take a while and I do want to find out what's happening to me, however I have a warm break booked this coming weekend for a couple of weeks. So I will do this on my return ASAP.

As an example of a normal day for me, today I have been to work and I can share my records of this day. Understanding I have taken 23 units of Tresiba Sunday night.
07:00 B/S 9.3 Breakfast was two poached eggs with toast, Humalog 0 units taken
10:00 B/S 10.9 4 table spoons of cous cous, with a packet of crisps Humalog 2 units taken
13:00 B/S 9.4 6 table spoons of cous cous, 2 scones, 1 slice of ginger cake, 1 wafer biscuit Humalog 3 units taken
17:00 B/S 7.6 185 grams spaghetti pasta with approx 300 grams Domino Bolognese & 200 grams of mince Humalog 5 units taken
19:30 B/S 4.6 Small bowl of ice cream Humalog 0 units taken
Ice cream had to raise my blood sugar level.
Following this at 22:00 will be 23 units of Tresiba, this amount of units I have taken for now 4 days.

My problem is that if I add 1 unit to the Tresiba my B/S will be below 5 in the morning, which I raise my B/S to drive but it takes over from my Humalog insulin, to the point that I do not take any units of Humalog until my evening meal because its at 17:00, when my B/S will be up to a high of 14 - 16?

Kind Regards
Nick

 

[1nick]

Hi Nick
It sounds to me like you've got far too much basal in your system and that's the root of your issue. It sounds like you need to reassess your food based insulin too though which can get complicated. Who provides your diabetes care, is it a GP surgery or do you have a clinic? Do you use ratios for food (carb count) or are you using fixed doses? When did the issues start, before or after you switched to Tresiba? Sorry to ask so many questions, insulin is a tricky area and it's good to have a bit of context 🙂

Hi KookyCat

Thanks for your reply.
I'm now believing not only do I need to redo some proper basal testing but I may need to adjust the time I take my Tresiba also?

I have had good control over my diabetes for 26 years by using carb counting but in the last 18 months something is going on/wrong. I have not been given any answers from the diabetes clinic, which I attend yearly, apart from changing from Lantus to Tresiba and this is my first week of using.

As an example of a normal day for me, today (17/4/17) I have been to work. Understanding I have taken 23 units of Tresiba Sunday night.

07:00 B/S 9.3 Breakfast was two poached eggs with toast, Humalog 0 units taken

10:00 B/S 10.9 4 table spoons of cous cous, with a packet of crisps Humalog 2 units taken

13:00 B/S 9.4 6 table spoons of cous cous, 2 scones, 1 slice of ginger cake, 1 wafer biscuit Humalog 3 units taken

17:00 B/S 7.6 185 grams spaghetti pasta with approx 300 grams Domino Bolognese & 200 grams of mince Humalog 5 units taken

19:30 B/S 4.6 Small bowl of ice cream Humalog 0 units taken

Ice cream had to raise my blood sugar level a bit.

Following this at 22:00 will be 23 units of Tresiba, this amount of units I have taken for now 4 days.

Look forward to your thoughts here KookyCat!? Understanding that everyone is different with their amounts of insulin needs.

Await to hearing from you.

Kind Regards
Nick

 

[trophywench]

Well 9.3 is a bit high as a fasting BG really. I'd be aiming for between 5 and 7.

The breakfast clearly did increase your BG - but we don't know what happens to your BG between eating it and your next test.

We also have no idea how many grams of carbs any of that food represents - and the modern way of computing doses, relies on accurate carb-counting and dose adjustment.

Sounds to me like you haven't been taught to carb count the modern way - nothing unusual that you haven't - I mean I'd been T1 over 30 years before I managed to get on a course - and it literally did change my life for the better - at a time - just like you - when for the first time ever since being diagnosed - I was really, really struggling and NOTHING made sense. The teaching of the course, established logic in a much better defined way, and enables me to be completely flexible both about what I eat and when I eat it, and results in a far lower HbA1c than I've ever had since 1971 ! LOL

Danger is when we've been T1 a long time - all and sundry expect us to already know 'everything'. The truth is - very often - we don't.

I highly recommend you speak to your team very soon, and get yourself on such a course. Well worth one week of all our lives !

 

[1nick]

Hi Jenny

Last night I thought to wait before I have any ice cream and glad I did as

17/4/17 20:30 B/S 7
21:30 B/S 9.9 I took1 unit of Humalog, to now bring sugars down
22:00 23 units of Tresiba
18/4/17 06:30 B/S 3.4 Bowl of 2 Weetabix with 300 ml semi skimmed milk, 1 slice of toast with marmalade. No Humalog taken
07:00 B/S 6.1

You can see what is happening and I can agree that your thoughts that it may be right to take the Tresiba in the morning? But my question is why after 26 years off taking my slow acting Insulin with no problems ......... What is now happening to me/my body?

Hi Nick
It sounds to me like you've got far too much basal in your system and that's the root of your issue. It sounds like you need to reassess your food based insulin too though which can get complicated. Who provides your diabetes care, is it a GP surgery or do you have a clinic? Do you use ratios for food (carb count) or are you using fixed doses? When did the issues start, before or after you switched to Tresiba? Sorry to ask so many questions, insulin is a tricky area and it's good to have a bit of context 🙂

Morning KookyCat

Just thought I would pass you details of B/S with Insulin dosages of myself carried out, to this morning. I would be interested in your reply?

Last night I thought to wait before I have any ice cream and glad I did as

17/4/17
20:30 B/S 7

21:30 B/S 9.9 I took1 unit of Humalog, to now bring sugars down

22:00 23 units of Tresiba

18/4/17
06:30 B/S 3.4 Bowl of 2 Weetabix with 300 ml semi skimmed milk, 1 slice of toast with marmalade. No Humalog taken

07:00 B/S 6.1

My question is why after 26 years of taking my slow acting Insulin with no problems ......... What is now happening to me/my body?

 

[KookyCat]

Hi Nick
I understand you want to know what has caused this sudden change in how insulin behaves for you, but you may never get a real answer. There are lots of things that might cause changes, body weight is one as is a change in insulin resistance, both of those fluctuate as we get older sadly 🙂 as do hormone levels. Insulin is a hormone and interacts with all the other hormones in the body in complex ways so a change in other hormone levels could have an impact. People tend to assume it's just us gals who have hormones shooting around the place but the same is true of chaps, it's just not as obvious. There are other things too that impact how insulin behaves, including but not limited to the amount of exercise you take, how much muscle mass you have, how quickly your digestive system digests food. When you look at all those factors it's hardly surprising there are changes in requirements. If you're worried that there might be something wrong and that's why your insulin requirements have changed speak to your doctor about it, they should be able to reassure you.

It must be difficult if you've been doing the same thing for 20+ years and then suddenly you find it isn't working, but if I were you I'd concentrate on trying to establish the right dose of basal insulin and then working out what to inject with food will be easier. As Trophywench said it might be a good moment to revisit your team and perhaps a DAFNE course or something similar, having support whilst trying to work out how to adjust your insulin regime will be really crucial I think. For what it's worth it looks very much to me like your basal insulin dose may be much too high, and essentially you're just topping up with rapid when you need to take the edge off. This is quite similar to how mixed insulin works really but with a little bit more control. The current advice with two insulins is that the basal (Tresiba) should just be used to cover your basic functions like moving and breathing (keeping you ticking over) and then rapid should cover your food intake. Very few of us without a pump get that absolutely spot on, but the closer you get to that aim the more control you have. If you weren't taught to carb count then a course or time with a dietician will be invaluable for that because you need to work out how much insulin you need for a specific amount of carb which can be a bit mind boggling at first . If you have been taught to carb count and are good with all of that then some basal testing would be a really good idea.

How often do you see your team? Again as the very wise Trophywench mentioned, people tend to assume that if you've been at it for 20+ years you know everything there is to know about diabetes which might not be useful at this stage. You might want to have a chat with them about more close contact, and ask them to assume you're a newbie for a little while just so you can identify if there are areas you've missed. The positive in all that is that once you've finished you'll have the skills and experience to adjust again should your requirements change in the future 🙂

 

[SB2015]

Hi Nick
As others have said getting the basal insulin dose sorted so that it deals with the trickle of glucose that you liver is releasing enables you to then get correct ratios for the carbs and the correction doses. It certainly sounds like you have a lot of basal insulin on board, and that the humalog is then topping this up. I hope that you have a good break in the warm and that you then get things sorted out on your return.

I know for me I found injecting was very frustrating and getting a pump made all the difference as I am more able to mimic the behaviour of my pancreas when it was working. It does take a lot more work but it is a lot less frustrating and it is easier to make adjustments and sort out what needs changing.

 

[trophywench]

Thing is - if you (or anyone not just you) only test pre meal and bedtime - no-one has the slightest idea how high or low you go in between or when you do it.

Just because some of the glitches you body throws out are coinciding with some of your blood tests at the moment - does NOT mean you haven't always had glitches! 5 blood tests = 5 seconds of every day in which there are 86,000 seconds. So - what's your BG doing all of the other 86,395 every day? Answer - you haven't got the slightest idea really except the really obvious things like some of the time it will be going up and ditto down whilst thirdly for some of it, it remains level. Useless, in other words.

My clinic has a loan CGM. It's a 'cloaked' system so the wearer can't see what it's recording until they go back to the clinic a week later and have it downloaded - and then work through the graph with the DSN, discuss it and jointly decide what changes need to be made. I think you'd benefit greatly from using one for a week!