have i suffered permanant damage?

[michelle lilly]

hi,
I have had very brittle diabetes now for 17 years in and out of hospital, every time the doctors say they will be able to stabilize me, but after two to three weeks they give up saying the just don't understand how my blood glucose levels can change so dramatic from 600mg to 0.02mg, which happen to me two days ago,i was admitted to hospital after a routine check because i was complaining of mouth abscesses, after speaking to the dental nurse she told me to go to A/E, just by chance the checked my blood sugars and my urine i was above 600 and had ketones i was in DKA and did nt even know, i just felt ill and very tired. They then put me on an insulin drip, glucose and something else, would nt allow me to eat or drink not even a sip of water, this went on for over 24 hours, they checked my blood sugars and urine and also did blood tests every four hours, i could'nt stop passing urine, my blood glucose came down bit by bit then i remember the nurse saying it was 55 so a asked her to please stop the insulin drip say said no, the next thing i remember is coming round with an oxygen mask around 10 people holding me down as i was fitting soaking wet very cold confused and covered in blood, i had be moved out of my bed and put on a trolley, i have no memory of what happen so think i must of been in a coma for how long i just don't know i asked what happened and the only information they gave me was my blood glucose was 0.02mg which is basically nothing at all, my concern is since leaving hospital a day later i still feel really odd, very very tired, confused, irritable, headache, stomach ache just really unwell, my brain just is not working, writing this is really difficult as i keep forgetting how to spell words what am trying to say ect, should i go back to hospital and ask them to test my brain or will they just think i am being daft, also i keep having very low and high sugars more lows than normal, i am really terrified that something weird
is going on, i need some advice please!

 

[phoenix]

Hi Michelle,
I think that you must have a follow up appointment, If you haven't make one with the same diabetologue that saw you in the hospital. (get your medicine traitant to arrange it if necessary )
Write down your questions, so for example how low did you go and why. (as I said in another reply, I find it hard to believe that staff in hospitals are using mg/dl; none of my docs do and neither do they on French diabetes forums. They all use g/l http://sante-medecine.commentcamarche.net/faq2/164-glycemie-a-jeun-taux-de-sucre-dans-le-sang) It is only lab tests that will give measures less than about 20mg/dl which is 0.2g/l.otherwise they just say lo.From personal experience I've had a couple of 'lo readings and I still have good cognitive function')


The next thing though I would have thought is to discuss where to go from here. Have you done a course in insulinotherapie
fonctionelle? This would help you learn how to keep track of your levels and adjust insulin to food intake.

 

[Daibell]

HI. I have seen various posts on the forum about hospitals mis-managing insulin when people have gone in with DKA. I can understand generally keeping off water and certain foods if you are on a properly managed drip, otherwise lots of water is essential if in DKA. To ban even a sip of water seems bizarre? I know nothing about pumps so can't comment on that aspect. I assume you are keeping sensible control of your carb intake to minimise sugar swings. As you are on a lot of meds only the HCPs can really advise. Good luck.

 

[AndBreathe]

Michelle, you certainly seem to have been in the wars of late. I can't imagine what its been like, and hopefully I will never have to.

Considering your brittle diabetes, have you ever used a CGM? I have no personal experience of the pros and cons of these, but logic tells me it would give insight and information that could be missed by finger prick testing in the usual way. Doubtless someone with experience or greater knowledge will comment on this in due course.

I hope you can get answers to your questions, but I doubt anyone here can answer them for you. Only those who were there, or have access to your records can help you there, so following up with them seems like the key.