Quick question

[kaylz91]

I think the reason you are starving is because of the insulin. When I was on insulin I was starving all the time it was horrible I’m glad I’m not on it. And no I have no way of testing ketones.

Insulin doesn't make you starving, I've been using it for over 4 years and I only feel starving when the weather turns cold, if the OP gets a Type 1 diagnosis ketone testing is essential while they don't generally prescribe a means of testing ketones to Type 2's as they still produce their own insulin, DKA is caused by not enough insulin and far more common in Type 1's as they end up not producing any

 

[UK T1]

Hi, if you're type 1 then you do need the insulin to live. It might take a bit of getting used to, but I am type 1 and taught myself carbohydrate counting. I was initially put on fixed insulin doses so had to eat fixed carbohydrate quantites. It takes a little while for your body to get used to having enough insulin again, so will take a little while to figure out how your body reacts to it which is why they try the fixed doses first. For me, carbohydrate counting means I can eat what I want when I want, as long as I have a rough idea of the total carbohydrates in the meal/drink and inject accordingly (as others have said).

I am never hungry because of insulin. I notice my stomach rumbling but can always easily tell that is because I haven't eaten much or haven't eaten for a while (late lunch etc). When my blood glucose values go high I definitely lose my appetite. This makes sense to me, because if my blood glucose level is high my body is saying 'don't eat more because it might make your glucose levels go even higher'! But that doesn't mean when my blood glucose values are within range that I am hungry...

Don't be afraid to email your diabetes specialist nurse questions even when you don't have an appointment. Some things will be more easily explained in an appointment but you don't have to wait for an appointment to ask. Loads of experience on here too of course, though we can't give advice just say how it is for us.

 

[Carl40]

Hi Carl, as an insulin user, yes you can eat 'anything' in theory but it's not always that easy to manage higher carb foods or to match them with insulin, especially at the start when you are finding your feet. Because your glucose levels were still high, I think the advice for now was to eat lower carb snacks foods to stop your levels going higher in these early stages. Your insulin works in conjunction with what you eat so as you get more experienced you can make your own choices as to how to manage it and how many carbs you wish to eat, etc. An orange by the way (a large one) has around 30 plus carbs in it so it would have the same effect on your levels as a chocolate eclair or 2 or 3 biscuits. Many of us require insulin for any food we consume that is over 10 to 15 carbs but as I say, it's test, test, test and you will become more experienced on how YOUR body reacts specifically. x

Hi KK,

Thanks for the clarity. I am trying to do that, snacks typically are small pieces of cheese or fruit. We're picking up some chickpeas later because I've seen them recommended - baked then coated in garlic and spices. Sounds good to me.

As for the orange, I had picked up on that so spread it out over the full afternoon rather than in one go or a short amount of time.

Twice I've had shreddies with semi skimmed milk this week and twice they seem to have created a higher level than i'd have expected in my figures. Conclusion - avoid them!

Got some additional strips when I saw the nurse this week in order to test more. They go down quickly, especially when you end up with cold hands and it is harder to get the blood out. Learning as I go but much better at this side of it now!

 

[Carl40]

Insulin doesn't make you starving, I've been using it for over 4 years and I only feel starving when the weather turns cold, if the OP gets a Type 1 diagnosis ketone testing is essential while they don't generally prescribe a means of testing ketones to Type 2's as they still produce their own insulin, DKA is caused by not enough insulin and far more common in Type 1's as they end up not producing any

Still waiting for an appointment to have the peptide test. Nurse has requested it but heard nothing from anyone about it yet. No idea how long it will take but it makes it difficult to focus on a way forward. Proceeding as if its type one at present as per the nurse.

 

[Carl40]

I think the reason you are starving is because of the insulin. When I was on insulin I was starving all the time it was horrible I’m glad I’m not on it. And no I have no way of testing ketones.

Thanks Sarah. The hunger is not fun!

 

[Carl40]

Hi, if you're type 1 then you do need the insulin to live. It might take a bit of getting used to, but I am type 1 and taught myself carbohydrate counting. I was initially put on fixed insulin doses so had to eat fixed carbohydrate quantites. It takes a little while for your body to get used to having enough insulin again, so will take a little while to figure out how your body reacts to it which is why they try the fixed doses first. For me, carbohydrate counting means I can eat what I want when I want, as long as I have a rough idea of the total carbohydrates in the meal/drink and inject accordingly (as others have said).

I am never hungry because of insulin. I notice my stomach rumbling but can always easily tell that is because I haven't eaten much or haven't eaten for a while (late lunch etc). When my blood glucose values go high I definitely lose my appetite. This makes sense to me, because if my blood glucose level is high my body is saying 'don't eat more because it might make your glucose levels go even higher'! But that doesn't mean when my blood glucose values are within range that I am hungry...

Don't be afraid to email your diabetes specialist nurse questions even when you don't have an appointment. Some things will be more easily explained in an appointment but you don't have to wait for an appointment to ask. Loads of experience on here too of course, though we can't give advice just say how it is for us.

Thanks, appreciated.

I'm wondering if it is related to the influx of insulin to my system. I get the impression that my body became used to high levels of glucose in my blood and as it starts to decline, it is having some side effects such as the hunger but that it will eventually settle.

The hunger comes on quite suddenly. Can go from feeling ok, not especially hungry to feeling like I;ve not eaten in weeks in around an hour - can come on very rapidly after eating or two - four hours afterwards.


My HbA1c was 128. Have also started statins.

Is really helpful reading these experiences because it gives me an idea of what is possible, likely and unlikely.

What you're saying makes sense about the glucose levels and appetite. Think this is whats happening to me but my body is used to levels way above the ideal target!

 

[UK T1]

Thanks, appreciated.

I'm wondering if it is related to the influx of insulin to my system. I get the impression that my body became used to high levels of glucose in my blood and as it starts to decline, it is having some side effects such as the hunger but that it will eventually settle.

The hunger comes on quite suddenly. Can go from feeling ok, not especially hungry to feeling like I;ve not eaten in weeks in around an hour - can come on very rapidly after eating or two - four hours afterwards.


My HbA1c was 128. Have also started statins.

Is really helpful reading these experiences because it gives me an idea of what is possible, likely and unlikely.

What you're saying makes sense about the glucose levels and appetite. Think this is whats happening to me but my body is used to levels way above the ideal target!

I wonder if this is coinciding with a sudden drop on your glucose levels? Does your body think you're hypo because they've suddenly dropped, eventhough they're still in the safe range. People have 'false hypos' when they have had consistently high glucose levels and then those levels drop to being in a safer 'normal range'. So the hypo symptoms are there but only because your body is not used to being in the safer glucose ranges yet. Should subside once you're more consistently within target. Everyone's hypo (real or false) symptoms are different of course.

 

[Carl40]

I wonder if this is coinciding with a sudden drop on your glucose levels? Does your body think you're hypo because they've suddenly dropped, eventhough they're still in the safe range. People have 'false hypos' when they have had consistently high glucose levels and then those levels drop to being in a safer 'normal range'. So the hypo symptoms are there but only because your body is not used to being in the safer glucose ranges yet. Should subside once you're more consistently within target. Everyone's hypo (real or false) symptoms are different of course.

Makes most sense, doesn't it? Looking at the figures it's 50/50 so far (only because its early days I suspect).

Gut feeling is that is absolutely the main reason.

I wonder also if, because I wasn't monitoring what I'd eat before diagnosis, that when I started to get hungry i'd just eat something and not experience it. I bet my calorie and carb intake before diagnosis was significantly higher than it is now.

Much appreciated, think we're getting somewhere with understanding what's going on and I do think it will settle as levels normalise and stabilise.

 

[kaylz91]

especially when you end up with cold hands and it is harder to get the blood out.

Always wash before testing where possible with warm water and dry properly, you can heat them either under your armpit or between your legs, hold your hand down towards the ground for a while before pricking to encourage the blood to flow to the tips of the fingers, all very handy tips! Also what BG meter and lancing device are you using? It may be worth trying adjusting the depth setting to see if that helps at all too xx

 

[TashT1]

It’s nice to hear your getting to grip with things Carl. That C-peptide test really will be a game changer

 

[Carl40]

It’s nice to hear your getting to grip with things Carl. That C-peptide test really will be a game changer

Thanks, it certainly will. Have no idea when I'm going to get an appointment for it though!

Long way to go but a bit of clarity on where I stand will definitely be appreciated.

 

[Carl40]

New question folks -

Started the daily ABASAGLAR pen at 10 units last Friday. Was being told to increase by two units every four days. On Wed I was taking 12 units a day when the nurse recommended I jump up to 20 units and continue increasing by two every four days afterward.

What's the maximum dose of this people would take each day.

I'm still averaging around 16 - 18 when taking pre-post meal levels into account... assuming the rate of decrease in average rates continued then i'd be looking somewhere around 40 units a day.

I'm sure it doesn't work like that but was curious anyway.

Thanks

 

[kaylz91]

@Carl40 I'm afraid there isn't an answer to your question, we are all individual and therefore all require different amounts of insulin so there isn't a max dose, you need what you need and that's it xx

 

[TashT1]

There isn’t a maximum dose as Kaylz says. Some people need 60 or 100u of basal. Your nurse will keep telling you to increase your basal until you start to get fasting figures into single numbers. It might feel like a big jump but don’t worry those numbers will come down & I bet they do before you reach 40u’s.

For example a month after diagnosis I was on 28u of Lantus, my results were steadily in range so the consultant had me reduce my basal by 2 every couple of days. I made it down to 16u for a while. I’m now back up to 23u because our insulin requirements can change whenever they **** well feel like it!

Congrats on making it through week 1, your levels should come down steadily over the next week, hopefully into single figures. When they did for me I felt a lot better.

 

[kaylz91]

Like @TashT1 most people's varies throughout the year etc and especially when newly diagnosed, I was started on 8U of my basal (Tresiba) but was sleeping through hypo's on that so I had to reduce it to only 1U for almost 2 years, currently I'm on 29U, over Christmas and New Year it was lower but I was having daily lows so had to reduce it again then, it won't stay the same unfortunately but in time you will learn to see when adjustments need made and you will be able to make them yourself xx

 

[Carl40]

Thanks Tash and Kaylz, really interesting. I'm up to 22 now and taking it in my stride.

Have put my readings into excel and can see the trend down - more pronounced pre-meal rather than post but feeling confident it is going in right direction.

Image below, if it works, is the pre-meal readings.

 

[TashT1]

It looks like your heading in the right direction, I always like seeing my data over a couple of weeks but I have a Libra so that’s super easy without any spreadsheets. But it’s hugely motivating for you to see those numbers coming down.

 

[Carl40]

It looks like your heading in the right direction, I always like seeing my data over a couple of weeks but I have a Libra so that’s super easy without any spreadsheets. But it’s hugely motivating for you to see those numbers coming down.

Like the sound of the Libra - think they'll give me one as its my start sign?

Definitely, shows things are working out. Helps understand the interaction of insulin and food.

One more question, been trying to figure out how to explain it but just thinking about it now.

The starvation is now settling down which is good but another thing is becoming more prominent.

I've got 20/20 vision but sitting here now I'm having to consciously focus on the screen otherwise its all blurred - its the same with everything at present. Is this normal?

 

[TashT1]

Having high levels for a long time will affect your eye sight. It’s probably just temporary but def mention it to your nurse when you next speak. You should get invited to an eye check at the hospital but I’m still waiting for mine.

I accidentally got given a Libra by an over keen nurse & then had it taken off my prescription so now I self fund at £100 a month but it’s worth it. Apparently when I’m completely out of insulin I might get one on prescription again. It’s worth asking, your CCG might be more generous & it really helps with control.

 

[Carl40]

Having high levels for a long time will affect your eye sight. It’s probably just temporary but def mention it to your nurse when you next speak. You should get invited to an eye check at the hospital but I’m still waiting for mine.

I accidentally got given a Libra by an over keen nurse & then had it taken off my prescription so now I self fund at £100 a month but it’s worth it. Apparently when I’m completely out of insulin I might get one on prescription again. It’s worth asking, your CCG might be more generous & it really helps with control.

I was reading that when you have high levels it can mean there is more water in your eyes and once levels come down it can settle again. Will definitely flag it up though..

Good luck getting it back on prescription. I'll make some enquiries but think it may have to wait til we've confirmed whether its type one or two!

Levels are really coming down now, record lows each test I've done today so far - halved what they were this time last week. At this rate I'll be at the right level by midweek!