Type 1 Serious advice/help needed. I’ve given up.

You are caring for yourself by asking for help, and that is important! I'm sure lots will be able to offer help on here, but realise you've made a fantastic start already by asking for it in the first place. Small steps all add up

Hi and welcome. You don't need me to tell you that those figures and multiple DKA are very serious. Have you had any counselling? I do volunteer work for my Local Mind charity (on the IT side) and know just how good they are and really care. If you have a local Mind do contact them or get the GP to refer you. Rather than your diabetes team I suspect you really need help on the mental health side. Do ask here if you need any specific T1 help.

daemoncor said:

I honestly don’t know what path to take and my diabetes team are absolutely useless. I’ve been honest with them, and they don’t do anything to support me.

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Doesn't totally surprise me, some clinics are much better than others.

Look, I agree with the others that it may be psychological support that you need the most, but I'll talk a little about the mechanics of managing your T1.

First question, what is your insulin regime? Basal bolus?

*********** basal bolus clinic input*******************
Your team should set you up with a basal dose that keeps you level throughout the night. They then should give you a carb ratio so you know how much insulin you need for a certain amount of carb (eg 1 unit for 5, 7, 10 or 20g of carb, yes the amounts do vary that much and can even vary by time of day). This assumes you have some idea how to count carbs, but there are online course for this.

Then they should give you a correction dose ratio (eg 1 unit of insulin brings you down by 2 mmol/L, but again that value can vary a lot).
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But if your levels are as high as you say and you're not skipping injections, then your team is totally failing you, as it sounds that you are on completely the wrong dose/insulins/whatever.

Second question. What, if anything, has your clinic suggested? (Probably should be the first question).

Third question. Are you managing to do your injections now and how often are you testing? You must be feeling so ill with levels that high and that is probably one of the reasons why you have little motivation/energy for change. you'd probably be eligible for the freestyle libre if you asked.


Look, I had abysmal care right through my teens to early twenties (no glucometers available then but I'm guessing I went over 20 a fair amount, because I often got extremely thirsty). Though I didn't (precisely) do diabulimia I know I was eating too much for my insulin. I lucked out and didn't do much damage (that I'm aware of) but there are a lot of stories on here from people who've halted or even reversed their diabetic damage by improving their control. For me, the turning point was visiting a diabetic clinic for the first time (my mother had me visiting a specialist privately as a child) at 20, and being given my first glucometer -" try to get your average below 13...." (or that might have been my hba1c), and a basal/bolus regime "it's more injections but you may find it easier".

Good luck. Please come back and let us know how you are going. You're not the first and unfortunately you won't be the last T1 with these issues, but you don't have to keep them. Getting through diabulimia is a huge achievement, if you can now work on the control aspect you can start feeling the benefit of improved sugars.