Struggling to Control

[Dean C]

Hi All,
First time poster on here!
I am fairly new to all this, I was diagnosed type 1 in July 2022. I’m 32 and it was a massive shock…in fact I was diagnosed 3 days after coming back from my honeymoon! We all have to adjust into first year of marriage but this was not in the plan!

I have been battling to get my blood sugars down since, I’ve made ALOT of sacrifices along the way, given up smoking, reduced my usual diet of high sugar sweets, takeaways and basically bread!

I had (what I thought, it all under fairly good control) however over the last few weeks it has been generally impossible to get my glucose levels down. I’ve tried 1 unit per 10g of carbs, reduced carb diet, reduced size of meals, 1.5 unit per carbs, injection top ups in between meals. Nothing has worked….

I guess I’m kind of looking for some experiences on here that would match anything I’m going through. I’ve got my own theories from my vape juices increasing levels to insulin resistance.

Would truly appreciate anyone else’s stories that would be similar, I know it’s not an exact science with diabetes and I’m yet to do my dafne course….but it’s a daily struggle that is completely overwhelming and depressing.

Feel like I’m losing.

Thanks all,

Dean

 

[SB2015]

Hi All,
First time poster on here!
I am fairly new to all this, I was diagnosed type 1 in July 2022. I’m 32 and it was a massive shock…in fact I was diagnosed 3 days after coming back from my honeymoon! We all have to adjust into first year of marriage but this was not in the plan!

I have been battling to get my blood sugars down since, I’ve made ALOT of sacrifices along the way, given up smoking, reduced my usual diet of high sugar sweets, takeaways and basically bread!

I had (what I thought, it all under fairly good control) however over the last few weeks it has been generally impossible to get my glucose levels down. I’ve tried 1 unit per 10g of carbs, reduced carb diet, reduced size of meals, 1.5 unit per carbs, injection top ups in between meals. Nothing has worked….

I guess I’m kind of looking for some experiences on here that would match anything I’m going through. I’ve got my own theories from my vape juices increasing levels to insulin resistance.

Would truly appreciate anyone else’s stories that would be similar, I know it’s not an exact science with diabetes and I’m yet to do my dafne course….but it’s a daily struggle that is completely overwhelming and depressing.

Feel like I’m losing.

Thanks all,

Dean

Hi Dean from another late (a lot later than you) starter with T1.
Not the best timing for you with your diagnosis, and it is always a big shock at any age.

Diabetes does sometimes seem to have a mind of its own. However here are some things that might be worth thinking about.

First to say it may well be that your Honeymoon Period (for T1 is over) When first diagnosed and injecting insulin that gives your remaining beta cells a bit of rest and then they start to play for a while before eventually being destroyed like all the others. It may be that your final beta cells have given up the ghost and you will then need more insulin.

You are already carb counting and adjusting your own ratios which is the basis of our management. I am guessing that you are on insulin pens at present so it would be worth checking these things:

How long has your insulin cartridge been in your pen? After 28 days it starts not to work as well, so Inused to date mine and discard after 28 days. It did mean wasting some as I was on tiny doses at the start but it meant that things were more consistent.
Have you got the right insulin in the right pen. I muddled mine up and my levels were all over the place until I spotted my mistake.

Diabetes just doesn’t always follow ‘the rules’ and yes there are times when all of us have weird levels, especially at this time of year with high carb foods that we perhaps don’t eat for the rest of the year.

If you are happy to do so, it will help us in our replies if we know what insulins you are using.

I hope that the suggestions are of some help, but do come back with any other questions. Nothing is considered silly on here. just ask.

 

[rebrascora]

Hi Dean and welcome.

Sorry to hear you are going through a rough time with your diabetes. Can I ask which basal insulin you use and how many units you take? It is likely I think that this is part of your honey moon phase, where a few more of your insulin producing beta cells have died off. I went through three quite distinct phases like this at roughly 6 monthly intervals from diagnosis where my insulin needs started to increase and it was basal insulin doses which needed to be adjusted, not fast acting. The last time it happened was just after my first Covid vaccination and over the next few months I had to gradually almost double my basal insulin dose to level things out. Since then things have been pretty stable again and that is nearly 2 years ago now.
I find it really surprising how I can inject correction after correction (lots of units) of fast acting insulin and it seems like I am injecting water and yet just a couple of extra units of basal insulin will make a significant difference. If you are not confident of adjusting your basal dose(s) then discuss this with your DSN and also ask about being put forward for a DAFNE course which will teach you how to recognize when your basal dose needs changing. I think you can be led to believe that once your basal dose is set, that is it for life, but in reality basal insulin needs change in response to many different factors including the change of the seasons and illness or injury, but during the honeymoon period, this can be particularly relevant as your remaining beta cells gradually die off.

If you haven't heard the term honeymoon period in relation to diabetes..... rather than just being newly married.... it is the time after diagnosis when your own insulin production is still limping along and producing some but not enough insulin before your immune system eventually wipes out all your remaining beta cells and you are totally reliant on injected insulin. For some people the home produced insulin will round off the edges and make your diabetes easier to manage but for others it can make things more erratic and difficult to manage.

 

[Dean C]

Hi Dean from another late (a lot later than you) starter with T1.
Not the best timing for you with your diagnosis, and it is always a big shock at any age.

Diabetes does sometimes seem to have a mind of its own. However here are some things that might be worth thinking about.

First to say it may well be that your Honeymoon Period (for T1 is over) When first diagnosed and injecting insulin that gives your remaining beta cells a bit of rest and then they start to play for a while before eventually being destroyed like all the others. It may be that your final beta cells have given up the ghost and you will then need more insulin.

You are already carb counting and adjusting your own ratios which is the basis of our management. I am guessing that you are on insulin pens at present so it would be worth checking these things:

How long has your insulin cartridge been in your pen? After 28 days it starts not to work as well, so Inused to date mine and discard after 28 days. It did mean wasting some as I was on tiny doses at the start but it meant that things were more consistent.
Have you got the right insulin in the right pen. I muddled mine up and my levels were all over the place until I spotted my mistake.

Diabetes just doesn’t always follow ‘the rules’ and yes there are times when all of us have weird levels, especially at this time of year with high carb foods that we perhaps don’t eat for the rest of the year.

If you are happy to do so, it will help us in our replies if we know what insulins you are using.

I hope that the suggestions are of some help, but do come back with any other questions. Nothing is considered silly on here. just ask.

Hi SB15

 

[SB2015]

Hi @Dean C

Just replying to someone else, and another thought: once you are high it is more difficult to get levels down, and the insulin dose doesn’t work as effectively. This is well worth talking to your team about.

Another thing that a lot of us find helpful to is to pre-bolus for our meals. The timing is different for each of us and can vary during the day. It is a case of trial and improvement and keeping a watch on your levels.

As @rebrascora said we are often given the impression a5 the start that all our doses and ratios are fixed, but they do change over time and it is worth talking to your team about them helping you with this if you are not sure about this.

 

[Dean C]

Hi Both, thank you for responding so rapidly!
I am currently on 10units of Levimir in the AM / 15 units in the PM. I am on novorapid for fast acting insulin.
I started on 8/8 doses and gradually gone up.

I am attending the DAFNE course in February and have a carb course in January. I’m sure both of these will prove extremely helpful, but until then, when you feel it is out of control it stops you doing anything! I’m in constant fear of hypo’s and also consistent highs…

I’m currently injecting 20mins before a meal and starting to go to 30mins on carb heavier meals. Doesn’t seem to help too much.

I’ll increase current long insulin +2 units AM/PM and see where it gets me.

Thanks all

 

[rebrascora]

Good to hear you have a DAFNE course scheduled early in the new year.
Do you have Freestyle Libre sensors and if so, can you post a photo of a typical 24hr graph, so that we can see what you are dealing with? Do your levels tend to go upwards or downwards overnight? I would be cautious of increasing the evening dose as well as the morning dose of Levemir without seeing what the graph is doing overnight. I know we are all different but most people need less basal insulin at night than during the day, which is why I am a little cautious about you increasing the evening dose as well as the morning dose, especially when you are nervous of hypos.

 

[rebrascora]

Further to the above, the great thing about Levemir (I absolutely love Levemir as a basal insulin) is that you see the results pretty well straight away and you can therefore make small adjustments more frequently than the longer acting basal insulins like Tresiba, so there is no harm in making an adjustment just to your daytime dose for a day or two and then if necessary increasing it by a bit more or increasing the night time dose if it looks like your night time levels are still rising, but the general trend of your night time levels is a really good guide for whether you evening basal is correct or not.
Just to illustrate the point, I currently need 24 units of Levemir in the morning but just 2.5 units at bedtime. I am not saying this is common as it is unusual to have such a large disparity in doses, but just to be aware of how wide the variety between people can be with basal insulin in particular. When you take your Levemir can also be important and can be adjusted to what your body needs and when it needs it. So I no longer take mine at 12 hour intervals as I find I get better coverage to suit my body's needs by taking my morning one, the moment I wake up before I get out of bed (usually about 7am) or sometime I set an alarm for an hour before, inject and go back to sleep, then I take my evening dose at bedtime which is usually 11pm. This is because I need maximum coverage in the morning when many of us are insulin resistant/Dawn Phenomenon/Foot On The Floor Syndrome, so getting that morning dose in before I get out of bed is really helpful and taking the evening dose late means that more of it overlaps with the morning dose when I need more.
It is also convenient to keep my Levemir by the bed and inject when I wake up and go to bed, but the key thing is to get that morning dose in as early as possible because that is when our liver starts to dump glucose into our blood stream to give us energy for the day ahead.

 

[Dean C]

Good to hear you have a DAFNE course scheduled early in the new year.
Do you have Freestyle Libre sensors and if so, can you post a photo of a typical 24hr graph, so that we can see what you are dealing with? Do your levels tend to go upwards or downwards overnight? I would be cautious of increasing the evening dose as well as the morning dose of Levemir without seeing what the graph is doing overnight. I know we are all different but most people need less basal insulin at night than during the day, which is why I am a little cautious about you increasing the evening dose as well as the morning dose, especially when you are nervous of hypos.

Hi,
These are the last few days of my readings…as you can see I have a real low or lower during the middle of the day and then progressively increases through the afternoon into the evening.

 

[rebrascora]

Well that regular dip between 9 and 12 makes it look like your breakfast ratio is a bit heavy. I am not sure if you are then over treating the resulting hypos or near hypos or if it is lunch taking you high again.
Overnight levels look fairly stable for most of the night although obviously higher than you want them to be but I wouldn't increase the overnight basal from looking at those graphs. I think skipping some meals and doing some basal testing would be helpful to see what your levels are doing in the absence of food and bolus insulin..... so skip breakfast one day and just have lunch and evening meal and then have breakfast the next day but skip lunch and see what your levels do in the afternoon and then on the third day, have breakfast and lunch but skip your evening meal. This will give you a much clearer picture of whether your basal insulin is holding you steady or whether it needs tweaking.

It would also be useful to know what time you take your Levemir doses.

 

[SB2015]

Hi Both, thank you for responding so rapidly!
I am currently on 10units of Levimir in the AM / 15 units in the PM. I am on novorapid for fast acting insulin.
I started on 8/8 doses and gradually gone up.

I am attending the DAFNE course in February and have a carb course in January. I’m sure both of these will prove extremely helpful, but until then, when you feel it is out of control it stops you doing anything! I’m in constant fear of hypo’s and also consistent highs…

I’m currently injecting 20mins before a meal and starting to go to 30mins on carb heavier meals. Doesn’t seem to help too much.

I’ll increase current long insulin +2 units AM/PM and see where it gets me.

Thanks all

You have definitely got your head round things very quickly. Well done.

It is great to hear that you have got those two courses coming up, and they will definitely help you to make your own adjustments. I would agree with @rebrascora about trying to skip a meal, to see how your basal insulin is managing. This is dealing with the glucose that your body is trickling out to keep you ticking over. Missing a meal helps to see how your Levemir is doing it’s job.

Your team have out you straight in the most flexible regime, with the split Levemir. It is important that you take those morning and evening pretty close to the same time each day, so that reduces the variables in what you are doing.

It is understandable to be worried about hypos, but just make sure that you always have your chosen treatment with you. I stash jelly babies everywhere at home, so that they are on hand wherever I am. Also a spare lot in the car.

Keep the i questions coming.

 

[Inka]

That’s a massive and pretty quick drop on Dec 28th. Did you do a correction? Was that the result of a bolus? I ask because you say your blood sugar has only gone wonky since a few weeks ago. I’m wondering whether you’re over-correcting or over-treating hypos. Both those things are understandable but they can lead to ‘rollercoaster blood sugars’, which can be hard to stop because it becomes like a vicious circle of big highs, big lows.

As you mention your blood sugars were ok before but have recently gone a bit unstable, the first thing I’d do is change to new insulin cartridges (in case it’s an issue with your insulin having degraded), then I’d do a basal test. Basal needs change early in diagnosis and they also change in response to things like the weather, stress, daily routines, etc. Once you’ve got your basal ok, you can then look at your mealtime ratios one by one. Making ‘random’ changes is tempting when you’re struggling to get control, but it’s not the best way forward.

I’m sure you can sort this so don’t panic. It might take a little time, but I’m sure you can improve things. There’s no need for you to avoid bread or eat a very limited diet. Type 1 isn’t about the food, it’s about the insulin. If your insulin is wrong, you’ll get wonky results even if you’re eating the best diet in the world. Eat a normal healthy diet and ‘be your own pancreas’ by carefully adjusting your insulins to cover it. That’s the principle for Type 1.

 

[Gary S]

Hi All,
First time poster on here!
I am fairly new to all this, I was diagnosed type 1 in July 2022. I’m 32 and it was a massive shock…in fact I was diagnosed 3 days after coming back from my honeymoon! We all have to adjust into first year of marriage but this was not in the plan!

I have been battling to get my blood sugars down since, I’ve made ALOT of sacrifices along the way, given up smoking, reduced my usual diet of high sugar sweets, takeaways and basically bread!

I had (what I thought, it all under fairly good control) however over the last few weeks it has been generally impossible to get my glucose levels down. I’ve tried 1 unit per 10g of carbs, reduced carb diet, reduced size of meals, 1.5 unit per carbs, injection top ups in between meals. Nothing has worked….

I guess I’m kind of looking for some experiences on here that would match anything I’m going through. I’ve got my own theories from my vape juices increasing levels to insulin resistance.

Would truly appreciate anyone else’s stories that would be similar, I know it’s not an exact science with diabetes and I’m yet to do my dafne course….but it’s a daily struggle that is completely overwhelming and depressing.

Feel like I’m losing.

Thanks all,

Dean

Hello Dean

Diagnosed at 25 so similar paths taken. Going to give reassurance more than advice.
First off, the Diabetes team you have are your very best friends now (as I found out) and from a similar historical perspective, they will have experience in this exact problem you have and will give you a solution to your worries. Whenever I used to have problems (similar to yours) it always astounded me how they always "thought out of the box", so take their advice.
Others may disagree but through my own sugars, vaping will have minimal effect on you so congratulations to you for making the switch.
I haven't read too much about the replies to your thread (and believe me, these people know what they are talking about) but it does seem that a basil or bolus increase seems to be needed. (I'm guessing but it does seem your sugars are creeping back up, so probably basil (???) . Your nurse will know the answers.
BUT, and this is very important. You ARE STRESSING out over this unnecessarily. Stress (and we all know) sends your sugars into outer space. Your body and your personal life are going through a lot right now, so I personally think it is time for you to congratulate yourself on what you have done, get your stress levels down and absorb the advice that the wonderful Diabetes staff will help you with.
To be honest we have all been on your new journey and life WILL get easier for you.
Take care Dean and go easy on yourself!!!!!

 

[robyn2211]

Hi there!
I am having very much the same issues to you, however I was diagnosed only back in Oct.

The last 2 weeks, I cannot seem to get my blood glucose back into single figures and mine seems to sit at 12-14. My graphs looks so similar to yours so this thread has been so helpful- thank you Dean and everyone else! Lots of things to try out, if not I’ll give the hosp a ring.

Dean, can I ask what carb course you’re taking? And how you found out about?
I may look in a DAFNE course too!

Take care