Somewhat desperate, my last chance at this.

[Spanielmum92]

Where do I begin, I really couldn’t think which category to post in as it’s more of a rant than to post anything useful, but I’m feeling quite useless with everything.
T1 for 15 years, lots of inbetween life stuff, single mum kids disabilities etc etc diabetes took a back burner.
The only time in my life I’ve ever tried really hard to get to grips is when I’ve been pregnant.
In 2017 I went on a pump (fought for this) by 2024 July I started tslim closed loop, first month okay, more lows but less highs, then I had really long lasting lows and it scared me.
Obviously tweaked basals, ISF etc, then running high… then low again, any walking plummets me despite suspending 2 hours before, shoving down sugar anytime I move, 3 replacement pumps due to occlusions which tandem couldn’t fix over the phone. Constant bent cannulas near dka, tried different cannula including steel which wouldn’t stay put.
Final bent cannula Saturday night and bam, enough is enough back to pens.
Basically guessed 10u tresiba as this is what I was on before pump land, anyway 12u seems to be ok, keeping steady providing I don’t eat of course. I’m finding I’m needing around 4x the novorapid for meals, I’m not sure I can deal with it. I’m used to 1u per 12-15g, now I’m finding a piece of toast needs 4u or so. I know about low carb and I’m considering this now, I’ve done it before and I know it works

I just wonder is this my last chance of controlling this, I’m fed up of being Ill.
I have PKD aswell which wrecks my kidneys so it’s a miracle I’m still functioning - just.

 

[Tony337]

Hi
Goodness me you have a lot going on....
I cannot comment on pumps as i've successfully managed on MDI.
12 units of tresiba is not alot of background insulin so its no wonder you need extra fast acting insulin for food and if you add to that the strain you are feeling.

Do you have a CGM?

I cannot advise on how much insulin to take but i take 24 units of levemir (not as strong as tresiba) stay active (just always on the move nothing strenuous) graze during the day to keep me level (CGM essential) then pig out at 6pm and because of the activity during the day my sensitivity is fab u lous.

See your medical team on dosage but i would strongly recommend you see your GP about your mental health ( i am lucky i have a good surgery)

Keep ranting away on here as we all understand the strain of it all.

This forum can be quite a comforting place and i wish you all the luck in the world.

Tony

 

[Juicyj]

Hello @Spanielmum92

Wow sounds like an absolute mare...

Am another T Slim user with the G6 so hybrid closed loop and using steel sets, hope I can help..

So it took me a year on the T Slim to get my head round the pump, I was on medtronic before not HCL, so was used to seeing a number and if high correcting, on the T Slim it caused chaos as was affecting the algorithm, so was suffering lows alot after correcting highs, I didn't realise, as soon as I took my foot off the gas and allowed the algorithm to learn about me and work properly it got alot easier for me, I also use steel tips and have very few issues with these, the plastics sets would kink all the time and had occlusion issues and failures alot on these, they were also painful after a day or so and would get lumps at the site. I tend to use lower stomach for the steel tip sets which works fine for me.

The T Slim for me is such a brilliant tool NOW, not then as I was disillusioned but didn't connect the dots with correcting, I also combine low carb to achieve a time in range of around 80% now, am happy to chat on PM about my experience if it helps you to get back on track.

 

[Nicola M]

I’m not on TSlim so can’t help much with that although I know @EllieM is so may be able to also offer some insight.

In terms of you needing more insulin for carbs now it’s likely due to you going back to pens, a pump uses a continuous basal rate that varies every few minutes and a basal rate with an insulin pen can’t replicate that the same way so you may find your ratios will be less tight and you will need more insulin for your carbs.

 

[Spanielmum92]

Thankyou so much for your supportive replies, honestly I didn’t expect such lovely responses!
After running above 33 since my post I’ve gone back to pump
I have a history of anorexia and diabulimia, I was happy to inject a certain amount of tresiba but anything over this number I just can’t.
So what happened yesterday morning was, I ran HIGH all night long, my last injection of novorapid was 3u at 1am, at 6am my blood sugars plummet out of nowhere and I hit 4.4 from HIGH, presumably off the 12u tresiba I took previously at 9pm? I don’t understand how this could happen, this was finger prick reading of 4.4 (Dexcom said 3.7)
Anyway I let the tresiba leave my system and put my pump on last night.
I’ve left a message with the diabetic team to ask them to ring tslim air liquide to authorise some steel sets and also the other cannulas I haven’t yet tried (only tried auto soft 90)
I wonder if I have a lot of scar tissue?

Sorry if I haven’t responded to everything, my head is still a bubble and finally getting my sugars to low teens since the mega highs from the low ish reading, I’m feeling quite brain bedazzled! Plus a vets appt last night when I was just wanting to lie down doggy is fine btw! Spaniel crazy boy!

Thankyou again, I really appreciate the kindness and also words of wisdom!

 

[Juicyj]

Heya - to be honest, you will get the better results on the T Slim vs Pump therapy so stick with it, it takes some work to figure things out, I think I became disillusioned as people could only say great things about it and this wasn't my experience until I changed the way I managed it. As I said message me if I can help as happy to chat. Hope you feel better soon.

 

[Hopeful34]

To keep steel cannulas in place, I put a strip of tape across 2 of the edges once the cannula is in place, and then loop the tubing not too far away from the cannula, and tape that down as well. That keeps it firmly in place. Alternatively you could use Skin Tac, which as the name implies, makes your skin 'tacky' so the cannula won't move.

If you haven't already done so, you could try a different length of steel cannulas. As others have said, it takes time to adjust settings on the pump, but I hope you start to see light at the end of the tunnel.

 

[Tony337]

@Spanielmum92 I get the eating disorder thing and people don't like discussing such things and mental health falls in to the same category......
My food intake is decided upon by 2 factors ....my levels and my stomach disorder which i'm not going to go into...

I can look at some food and if my levels are right and my stomach is then i may choose to eat it.

If my levels are right but my stomach isn't i refuse every time and my knowledge of 50 years a type 1 gives me that confidence.

My relationship with food has become twisted and i am very aware of it but but but my levels are bang on and i always have a hefty meal at 6pm in the comfort of my own home.

I am happily married own house and car take holidays yet i feel lonely at times and i just wanted to offer some empathy with you as i do get it.
I really do wish you well....

Tony