Help!

[Red6]

Hi everyone,
Apologies I am new to these forums so probably doing this wrong. I’m 21 and had type 1 diabetes for 12 years now, I have been managing my diabetes well up until a few months ago. Now I am starting to get really down, my sugars never seem to want to stay steady and end up really high with no obvious cause (especially overnight), I’m taking my medication and doing all the necessary steps to keep them within a normal range but nothing seems to work. It is really starting to take its toll and now struggling to find the motivation to keep going and managing it, I have been in hospital twice in the last 2 weeks with hyperglycaemia. Does anyone have any suggestions on keeping sugars down that isn’t taking more insulin?

 

[Inka]

Welcome @Red6 🙂 Sorry to hear about your problems with highs.Could it be connected to the Covid vaccine? A number of people have found they’ve had to battle highs and increase their insulin after the vaccine.

If not, has anything else changed eg your weight, your daily routine, etc etc?

 

[rebrascora]

Hi and welcome

So pleased you have come to the forum for support as there is a huge wealth of knowledge and experience here to help you manage your levels better and provide a place where you can vent your frustrations to people who understand.

I'm one of those that has had problems with high levels for weeks after the vaccine and I have had to steadily increase my basal insulin from 16 units to 35 at one stage plus regular corrections with quick acting insulin. Thankfully I have started to need a bit less now so I am in the process of reducing it again but this has been going on since February..... Yesterday was my first day of lovely steady readings in a loooong time and it was absolute bliss!

Does anyone have any suggestions on keeping sugars down that isn’t taking more insulin?

Can you tell us which insulin's you use and do you have Freestyle Libre to monitor your levels. Are you on MDI or a pump?

Your comment about not taking more insulin makes me curious about the reasoning behind it? Are you already on very high doses of insulin? Could it be that you are suffering from insulin resistance or is it "mental" resistance to increasing your dose which was something that I really struggled with back in Feb and March. I kept jabbing myself corrections when I really needed to increase my basal but for some reason I was reluctant to keep doing that. The re is a saying on the forum that "you need as much insulin as you need" and what you need right now may be very different to what you need next week or in 10 years time and it goes both ways, more and less.... I think that was the thing for me, that I was worried that I was going to keep gradually needing more and more with no end in sight but it is now reducing.

Other things that you can try are increasing your activity levels, particularly if you don't normally do much exercise and/or reducing your carb intake a bit particularly if you are a bit heavy on carbs. If you don't have Freestyle Libre ask for it because it will help you. If you have it already, how often do you scan?

 

[leonS]

What are "all the necessary steps" that you have taken. You night find that more insulin must be included in the list. Ibaukib requirements do change over the years,

It is not easy to suggest anything with out knowing what tou have already done.

 

[helli]

Does anyone have any suggestions on keeping sugars down that isn’t taking more insulin?

Welcome to the forum, sorry to read about your problems.
Do you have a reason why you do not want to take more insulin? Our insulin needs vary from person to person and from day to day sometimes. The amount of insulin we need should not be judged against anyone else - we need as much as we need to maintain our levels in range. Don't forget that we become insulin resistant when our levels get high so we will need more to bring it back down.

That said, have you tried
- changing your insulin. Whilst it is rare, you may have a bad batch of insulin so it may be useful to get a new batch.
- changing your pen. Again rare, but insulin pens can become faulty and need replacing.
- changing your injection sites. If we inject in the same place, we build up scar tissue which can affect the absorption of our insulin
- checking your insulin pump. My last two points assumed you were on MDI - the same is kind of true with a pump if you are pumping.
- reducing the carbs you are eating. Whilst increasing blood sugars overnight is usually indicative of basal issues, changing your diet to lower carb may help. I have read that people on low carb diets need less basal as well as less bolus.
- exercise. Moving improves insulin efficiency.
- reduce stress. I know this is easier said than done but stress and anxiety will increase insulin resistance so if you are able to relax and get some good sleep this could help.

I hope you find some way to get your levels back on track.
(And apologise if my list includes things you have already tried.)

 

[Bruce Stephens]

You can also try changing when you eat. Most of us find we need more insulin at some times (for some meals) than at others. So it might be you can eat the same amount (if that's what you want to do) at lunch rather than at dinner (in the evening) using less insulin.

(You'll get a bigger effect from exercise and reducing carbs, though.)

 

[Red6]

Welcome @Red6 🙂 Sorry to hear about your problems with highs.Could it be connected to the Covid vaccine? A number of people have found they’ve had to battle highs and increase their insulin after the vaccine.

If not, has anything else changed eg your weight, your daily routine, etc etc?

I had my first does of vaccine back in March and have my second on Saturday. Nothing else has changed when it first started but had the type of insulin and doses changed in between but hasn’t seemed to touch it. I’m starting to think it is the vaccine reading other threads on here..

 

[Red6]

Hi and welcome

So pleased you have come to the forum for support as there is a huge wealth of knowledge and experience here to help you manage your levels better and provide a place where you can vent your frustrations to people who understand.

I'm one of those that has had problems with high levels for weeks after the vaccine and I have had to steadily increase my basal insulin from 16 units to 35 at one stage plus regular corrections with quick acting insulin. Thankfully I have started to need a bit less now so I am in the process of reducing it again but this has been going on since February..... Yesterday was my first day of lovely steady readings in a loooong time and it was absolute bliss!



Can you tell us which insulin's you use and do you have Freestyle Libre to monitor your levels. Are you on MDI or a pump?

Your comment about not taking more insulin makes me curious about the reasoning behind it? Are you already on very high doses of insulin? Could it be that you are suffering from insulin resistance or is it "mental" resistance to increasing your dose which was something that I really struggled with back in Feb and March. I kept jabbing myself corrections when I really needed to increase my basal but for some reason I was reluctant to keep doing that. The re is a saying on the forum that "you need as much insulin as you need" and what you need right now may be very different to what you need next week or in 10 years time and it goes both ways, more and less.... I think that was the thing for me, that I was worried that I was going to keep gradually needing more and more with no end in sight but it is now reducing.

Other things that you can try are increasing your activity levels, particularly if you don't normally do much exercise and/or reducing your carb intake a bit particularly if you are a bit heavy on carbs. If you don't have Freestyle Libre ask for it because it will help you. If you have it already, how often do you scan?

I’m happy you’ve said that, as much as my friends and family have tried to support me it is hard to explain how mentally draining having it is!
I was on levemir until around 3/4 weeks ago which was increased but didn’t seem to help the sugars which is when they changed it to tresiba, I’m now on 40 units which is fine but causing a lot of bruising on my sites which I’m assuming is the amount? I take Novorapid as well which I’ve been on since I was diagnosed and on relatively high doses of that too.
My sugars are just very up and down, it seems to be going well and then 10 minutes later I’m going high again.
In regards to the insulin, I feel like I have a bit of mental block and suffering a burnout, I’m very emotional about it at the moment and getting to the end of my tether. Also my injection sites are very lumpy, I inject into my stomach, thighs and hips and this probably doesn’t help. I also struggle with my weight and while I am not ‘big’ I have put on weight due to the medication and hate this has happened so I think doesn’t help.
I have a libre and scan around 10 times a day, at the moment I am on holiday so doing it a bit more but when at work I struggle to do it as often because it’s very fast paced.

 

[rebrascora]

Knowing which insulins you are on and the dose and the sort of reading you are getting throughout the day will give us an idea of what is going on. If your levels are consistently high day after day then your basal dose is likely too low still.... as I said I have had to steadily and consistently increase my basal doses since Feb and they are just starting to reduce a little now.

Have you done a basal test. This is particularly important if you don't have a Freestyle Libre sensor as it will tell you if your basal dose needs adjusting. If you don't know how to do it then there is a link somewhere which I will try to find.
Getting your basal dose correct is key to everything and nothing makes sense until you find the right dose but if your basal needs are fluctuating/increasing regularly, you have to keep increasing that basal until it balances out.
I think part of the problem is that people think basal insulin is set for life but it fluctuates with the seasons and hormones and a whole variety of other stuff and you have to be appraising it for adjustment on a regular basis.
Have you done an intensive education course like DAFNE (Dose Adjustment for Normal Eating) or whatever local equivalent your trust is signed up to. If not, do ask your clinic about signing up for one. It will help you enormously if you haven't done it. Just mixing with other Type 1s and sharing experiences is worth doing the course even without any course input but the content is brilliant and all about teaching you how to keep safe (and as much as possible out of hospital) in a whole variety of real life situations. There is an online BERTIE equivalent that you could do but "in person" experience is far more helpful in my opinion and the DAFNE courses are being starting up here in the North East now so I imagine other areas will be following suit and it takes time to get a place, so get your name on the list ASAP.

 

[rebrascora]

Apologies, you replied to my post whilst I was typing my last message so didn't see that you had answered many of my questions.

Have they changed your needle prescription as the needles are probably more likely to be causing bruising than the Tresiba. I know that my brand of needle has just been changed and it certainly can affect people in different ways like bruising, but if it is only your Tresiba injections and not the NR ones that are bruising then it could be the Tresiba I suppose.

I wonder if asking the clinic staff about trying Metformin might be helpful as that will help to reduce insulin resistance and make what you are using more effective as well as discourage your liver from outputting quite so much. I must confess that I considered using up the Metformin tablets that I have lying around from my initial diagnosis when my levels started increasing. I didn't because they cause me digestive upset and my system was already agitated but it would have been an interesting experiment.

Personally, I would fight tooth and nail to keep Levemir if anyone tried to change my basal. It is far more flexible and can be adjusted more easily. Tresiba provides a steady uniform release of insulin day and night but most people's bodies don't need that, they usually need more through the day, usually in the morning and less at night.

I think doing a basal test will show you where the problems lie and my guess would be that your basal dose is not correct and/or the Tresiba is not agreeing with you.

If you are struggling with weight then reducing your carbohydrate intake will help and it will also mean you need less insulin and that should help with your lumpy sites. Basically cut down on your bread, rice, pasta etc portions. What sort of NR doses are you using for meals and what are your ratios? Can't tell you how much better I feel for cutting the carbs and eating more fat. It is mind boggling to start with as most of our meals are built around a large portion of carbs and bread is used as a carrier for so many foods but once you learn a new way of eating and start cutting down on carbs you don't crave them so much and start to really enjoy the other elements of a meal.

As regards burnout, oit is a real problem for many people at various stages in their diabetes journey and I think you need to speak to your clinic about that but an education course like DAFNE should really help you.

 

[Inka]

I was wondering if Metformin would help too. I find even a moderate weight gain can have a surprisingly big effect. When things go wrong with control, it’s horrible and really gets you down. It’s totally understandable you’re stressed.

Perhaps simplifying things could help? Eg having the same breakfast and a similar lunch each day. I do that most days simply to save the effort of counting carbs. I know the carbs and can just concentrate on the million of other things I have to do. It also gives more consistency because you know those two meals are regular. The lessening of the mental effort helped me a lot when I was having burnout. I also raised my target levels ever so slightly, and again, that took some pressure off.

 

[everydayupsanddowns]

welcome to the forum @Red6

Sorry to hear about the tough time you are having.

Hopefully you’ve had some helpful thoughts and ideas already.

I am a bit worried about the lumpy sites you’ve mentioned - if you are ‘losing’ some doses into scar tissue, only for them to later find their way out when you least expect it you could be getting some really confusing and erratic results

Would you be able to avoid any areas with lumps for a while? Or are there not many lump-free spaces?