Troubles with T1 control

[philly1991]

Please don't feel like you should be embarrased about having trouble with your diabetes, it can be an exhausting condition.
Whether it is doing all you can and it still not working like you want it, or whether it's a touch of diabetic burn-out, those are things that many of us have to deal with at some point or another.

Would you like to start a thread on the challenges you face with your diabetes? Whatever they are, I'm sure we have members who can relate, sharing may help!

I've completely lost any control I had and I feel like I've gone somewhere beyond burnout. And even when I try my BG is just uncontrollable and so so high. I feel absolutely dreadful all the time. I just wish I knew what to do to get make things better.

 

[Antje77]

I've completely lost any control I had and I feel like I've gone somewhere beyond burnout. And even when I try my BG is just uncontrollable and so so high. I feel absolutely dreadful all the time. I just wish I knew what to do to get make things better.

That sounds horrible, and high BG can absolutely make you feel dreadful all on its own, both mentally and physically.
Do you have contact with your diabetes team? Have you reached out to ask for help?

Burnout is a nasty beast. How are you with taking your basal? Getting that one right can make a big difference if you're high all the time.

I really think you could do with making this a thread of its own, we'll have your back!

 

[philly1991]

That sounds horrible, and high BG can absolutely make you feel dreadful all on its own, both mentally and physically.
Do you have contact with your diabetes team? Have you reached out to ask for help?

Burnout is a nasty beast. How are you with taking your basal? Getting that one right can make a big difference if you're high all the time.

I really think you could do with making this a thread of its own, we'll have your back!

Usually fine with basal until recently. Now I'm neither consistent with bolus or basal. I see a diabetic nurse through my GP and she's usually great but I know she's tiring of me now too. I feel like I have nobody to turn to and with numbers this dire I sure could use the help. I know there's a mental block there too but I've not been offered help with that either.

A new thread is definitely a job for the morning I'm exhausted. Thankyou for talking @Antje77

 

[Antje77]

I see a diabetic nurse through my GP

Any reason why you're not under specialist care of an endocrinologist and diabetes specialist nurse, with sometimes specialised psychologists or dietitians as part of the team as well?
GP's and their nurses are usually dealing with T2's, not T1's, and they may lack the experience to adequately deal with T1's, especially when they are struggling.

I'm sure the mods will be happy to move this conversation to a new thread if you like.
Goodnight, sleep well.

 

[philly1991]

Any reason why you're not under specialist care of an endocrinologist and diabetes specialist nurse, with sometimes specialised psycholigists or dietitians as part of the team as well?
GP's and their nurses are usually dealing with T2's, ot T1's, and they may lack the experience to adequately deal with T1's, especially when they are struggling.

I'm sure the mods will be happy to move this conversation to a new thread if you like.
Goodnight, sleep well.

My diabetic nurse asked for a referral to the hospital, I had an appointment to see a consultant and they cancelled last minute with no explanation. Said it would be rescheduled but I'm still waiting. I also asked for input from a dietician which my nurse said the consultant could schedule for me but I never got to see the consultant. I've had no input from anybody aside for the diabetic nurse at my GP since the first year of covid and that was a consultant appointment over the phone.

 

[Hopeful34]

I'd ring the diabetes department at the hospital and ask to speak to the nurse explaining it's urgent in view of your high blood sugars. Also ask for an urgent appt with the Consultant. If you don't get anywhere that way, speak to the secretary or ring PALS. Unfortunately these days you've got to be very proactive sometimes to get the care you need, and should be getting.

 

[In Response]

I know this may seem like a small thing but, after 20 years, I do not consider diabetes "controllable". There are so many things that can affect our BG, mostly outside of our control, that we have zero chance of always having perfect numbers.
It is like suggesting we can always control young children - they have a mind of their own and do their own thing.

We have a set of tools (insulin, blood glucose monitors) to manage our diabetes but something will happen like stress or illness that will make it too hard for a human brain to cope with and for injected insulin to work fast enough.

Diabetes management is difficult.
Diabetes control is impossible. We do not have the correct tool for this - the only one I know about is a healthy pancreas.

Expecting to control diabetes with injected insulin will always lead to failure which will lead to mental health issues.
Try managing diabetes (and speaking to your clinic to learn more about using the tools) and be content with your best efforts.

 

[EllieM]

Note that these posts have been moved from the T1 hba1c thread here
https://www.diabetes.co.uk/forum/th...ba1c-test-results.24469/page-116#post-2631405


@philly1991 can I ask what kind of insulin regime you have (basal/bolus? am guessing not a pump of you're not seeing the hospital) .and how long you have been T1? And hopefully at a bare minimum your GP has set you up with a libre?

We can't advise on specific doses but we can give you useful links to things like basal testing. (In my opinion that is the first thing to get right if you are on a basal/bolus regime).

But I agree with @Hopeful34 that you should push hard to get an appointment at the hospital diabetes clinic.

 

[philly1991]

Tresiba is my bolus, 28 units and novorapid is my basal. I was diagnosed 2012 so 11 years now. Pump they won't allow me to have and I have a libre but absolutely despise it.

 

[philly1991]

Tresiba is my bolus, 28 units and novorapid is my basal. I was diagnosed 2012 so 11 years now. Pump they won't allow me to have and I have a libre but absolutely despise it.

Other way around sorry. Tresiba basal.

 

[philly1991]

Today is a perfect example of a day in the life of...
I woke 10.15am (I sleep ALOT)
Checked my BG at 10.23am.... 19.7
So I corrected, 5 units (I used to find that 1 unit would reduce by 3).
I check again at 12.36pm, just before lunch... 15.3
Ate lunch but as insulin was still active I only gave insulin for what I ate (no correction) which was 67g of carbs. So 7 units injected (ratio is 1 unit to each 10g of carbs)
I eat nothing and check again at 17.19pm... BG 18.0
So now I am feeling absolutely ravenous but don't want to eat again with BG at 18.0 and approaching bed time. And I basically just want to do what I normally do and ignore my diabetes and just eat anything and everything I can find in the house!

 

[EllieM]

I woke 10.15am (I sleep ALOT)

That could be a function of having high blood sugars?

So I corrected, 5 units (I used to find that 1 unit would reduce by 3).

Many of us (including me) find that we are a lot more insulin resistant when our bgs are high....

So 7 units injected (ratio is 1 unit to each 10g of carbs)

That sounds like the starting ratio that most people get put on when first diagnosed. Have you (or your DN) recalculated your rations recently? Yes, insulin ratios can and do change.


Do you test your ketones at all and is your weight stable?

Pump they won't allow me to have and I have a libre but absolutely despise it.

Maybe you should ask again about the pump as that can help people with variable insulin needs?
As for the libre, is it the tech issues with alerts or do you not like wearing a sensor??? I've lived through big changes in diabetic tech, probably with figures like your current ones in my teens but as that was pre glucometer and I'd got out of the habit of doing urine tests I don't know the exact figures.... (I just know that the diabetic clinic I got myself referred to as an adult were very very keen to get my hba1c down ).

Please don't blame yourself for your current bg situation. It sounds to me like you need more support to get where you want to be. Insulin needs can vary a lot, both between people and, for one person, according to weather, exercise, hormones and a multitude of other reasons including (according to some) the colour of the socks you put on in the morning.

I don't suppose you could get put on a DAFNE course?

 

[Grant_Vicat]

Today is a perfect example of a day in the life of...
I woke 10.15am (I sleep ALOT)
Checked my BG at 10.23am.... 19.7
So I corrected, 5 units (I used to find that 1 unit would reduce by 3).
I check again at 12.36pm, just before lunch... 15.3
Ate lunch but as insulin was still active I only gave insulin for what I ate (no correction) which was 67g of carbs. So 7 units injected (ratio is 1 unit to each 10g of carbs)
I eat nothing and check again at 17.19pm... BG 18.0
So now I am feeling absolutely ravenous but don't want to eat again with BG at 18.0 and approaching bed time. And I basically just want to do what I normally do and ignore my diabetes and just eat anything and everything I can find in the house!

I have just heard that 5 people in my village have tested positive for Covid. Your body could be trying to deal with an infection/virus. When I was Type 1 I used to have days exactly like yours today. What made it so difficult was that I didn't show any symptoms of whatever horror was going round the school where I worked. Just a thought.

 

[Antje77]

So now I am feeling absolutely ravenous but don't want to eat again with BG at 18.0 and approaching bed time.

In addition to everything @EllieM said above, what about eating something without carbs if you're hungry? Cheese. cold meats, pork scratchings?

 

[philly1991]

In addition to everything @EllieM said above, what about eating something without carbs if you're hungry? Cheese. cold meats, pork scratchings?

I ended up eating a cheese omelette but still no change to my BG before bed or when I woke this morning. It just isn't shifting.

 

[Antje77]

I ended up eating a cheese omelette but still no change to my BG before bed or when I woke this morning. It just isn't shifting.

This just means your doses aren't adequate at the moment, and you need help from your team adjusting them.
The good thing here is that you did eat to do something about the hunger but it didn't push your blood glucose any higher than it already was!

 

[tomrose]

I've completely lost any control I had and I feel like I've gone somewhere beyond burnout. And even when I try my BG is just uncontrollable and so so high. I feel absolutely dreadful all the time. I just wish I knew what to do to get make things better.

I feel for you, I really do. I think we all know how you feel to some extent. It’s a vicious cycle

For me, and it’s different for everyone, when I get like this I go back to absolute basics and really watch what I eat to get it back under control and minimise the amount of insulin and adjustments I need to make. Everyone is different.