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fed up

update:on my way to pick some basle up from the clinic,wants to see how i go on it for now.I see consultant in a week for antibodies test,soooooooooo happy that wheels are in motion ty for all you support guys yous are the best
 
little update: took 8 units of long lasting last night woke up to a very good 6.2 had breakfast small apple and 2 slices of linseed bread so round about 40 carbs sugars 2 hours later 8.2 but now have risen to 13 fast acting needed also I m thinking ,back in touch with diabetic nurse tomorrow for review
 
got my result through the door from the blood glucose tolerant test i had done a month ago,fasting 9.9 2 hours 29.1!!!!!! **** the glucose drink did me in for sure
 
wiserkurtious said:
got my result through the door from the blood glucose tolerant test i had done a month ago,fasting 9.9 2 hours 29.1!!!!!! **** the glucose drink did me in for sure
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Why on earth did it take a month to get those results?? I feel you're stuck in some nightmare here.

I'm getting angry on your behalf!
 
if you think the NHS is bad wait until you reach the HSE in Ireland (the irish equivalent of the NHS), the waiting list are so long i have been on the waiting list for a simple EMG for 2.5 years!! And new T1's and you are talking about young people are waiting up to a year to see a consultant.
 
azure said:
Why on earth did it take a month to get those results?? I feel you're stuck in some nightmare here.

I'm getting angry on your behalf!
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I ve been on basal for 2 days now and am feeling alot better,see my consultant in june still would like to take something with meals also to be able to have best control
 
wiserkurtious said:
I ve been on basal for 2 days now and am feeling alot better,see my consultant in june still would like to take something with meals also to be able to have best control
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Don't wait till June! I want to rush round and give you some fast acting insulin : D

Seriously, higher than desired blood sugars can cause damage. You've waited long enough and suffered enough highs. Can you not get the fast acting prescribed now?
 
db89 said:
Reading back through this thread it seems farcical the way you are being treated @wiserkurtious - have you been able to get any fast acting prescribed yet or still just on basal?
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been on basal for 2 day i did mention fast acting but she said i would have to discuss that with my consultant, i m also booked in for antibodies test,the hooneymoon period has f****d me up,mind the language!! now they are trying to figure out what type of diabetes i have,even though i went in with dka before diagnosis so have to go through the tests again I suppose
 
azure said:
Don't wait till June! I want to rush round and give you some fast acting insulin : D

Seriously, higher than desired blood sugars can cause damage. You've waited long enough and suffered enough highs. Can you not get the fast acting prescribed now?
Click to expand...

that d be lovely :) already found damage to the back of my eye last time out the 1 before that showed no damage after diagnosis so ya I ve been so frustrated with the advice i ve had for sure,all i want is the medication to best treat my condition
 
maria030660 said:
if you think the NHS is bad wait until you reach the HSE in Ireland (the irish equivalent of the NHS), the waiting list are so long i have been on the waiting list for a simple EMG for 2.5 years!! And new T1's and you are talking about young people are waiting up to a year to see a consultant.
Click to expand...
azure said:
Don't wait till June! I want to rush round and give you some fast acting insulin : D

Seriously, higher than desired blood sugars can cause damage. You've waited long enough and suffered enough highs. Can you not get the fast acting prescribed now?
Click to expand...


I appreciate the advice you ve given me you ve been a great help,best place to get the advice for sure
 
wiserkurtious said:
that d be lovely :) already found damage to the back of my eye last time out the 1 before that showed no damage after diagnosis so ya I ve been so frustrated with the advice i ve had for sure,all i want is the medication to best treat my condition
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I really honestly can't understand why they're faffing about so much. When I was diagnosed with Type 1, after an initial idiotic doctor who failed to,spot the signs, when I got to hospital I was started on insulin and have stayed on it.

I'm struggling not to,say something rude about your team here. What on earth are they playing at? How many tests and re-tests are they going to do?

If it was me, I'd be absolutely insisting on the insulin I needed and telling them that I'd be holding them personally responsible for any damage done to my body in the meantime.

I just can't fathom what on earth they're doing.
 
If you've already had the antibodies test back when you were diagnosed and you were positive and deemed Type 1 (even though you came off the insulin for a bit and have had a slow onset perhaps) I don't see what could have changed? Those responsible for delaying insulin therapy now that you seem to be needing it again are just putting your long term health at risk by not letting you manage it effectively.

I know you will probably be sick of phoning, waiting, pestering etc. but I would still be on at them consistently. It sounds like you need to get back in front of your consultant so you might want to concentrate your efforts there. Do you need referring back to them first or something? Do you have a DSN you could try and get in with before June? Just trying to think of any route you could use to get some fast acting (my DSN has made pretty much all of my prescription changes/additions so far).

I think it was @mahola who said earlier in the thread you may need to make a nuisance of yourself to get what you need and it sounds increasingly like that's what you'll need to do. Try the angle of asking the people you're speaking to what they would be doing in your situation (I'm guessing spiking levels and higher levels in general just recently haven't been helping you day to day in your general wellbeing either)?

Whole situation seems bonkers with nobody taking ownership for getting you on the right treatment.
 
db89 said:
If you've already had the antibodies test back when you were diagnosed and you were positive and deemed Type 1 (even though you came off the insulin for a bit and have had a slow onset perhaps) I don't see what could have changed? Those responsible for delaying insulin therapy now that you seem to be needing it again are just putting your long term health at risk by not letting you manage it effectively.

I know you will probably be sick of phoning, waiting, pestering etc. but I would still be on at them consistently. It sounds like you need to get back in front of your consultant so you might want to concentrate your efforts there. Do you need referring back to them first or something? Do you have a DSN you could try and get in with before June? Just trying to think of any route you could use to get some fast acting (my DSN has made pretty much all of my prescription changes/additions so far).

I think it was @mahola who said earlier in the thread you may need to make a nuisance of yourself to get what you need and it sounds increasingly like that's what you'll need to do. Try the angle of asking the people you're speaking to what they would be doing in your situation (I'm guessing spiking levels and higher levels in general just recently haven't been helping you day to day in your general wellbeing either)?

Whole situation seems bonkers with nobody taking ownership for getting you on the right treatment.
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they were negative but they still diagnosed me type 1 due to dka,slim build and all the signs of type 1.ya i feel like i m just getting by atm tbh,june i see my consultant when previously told it d be four weeks ya i feel my situation is unfortunate and tbh i d hold my diabetes team partly accountable to the damage to the back of my eye
 
azure said:
I really honestly can't understand why they're faffing about so much. When I was diagnosed with Type 1, after an initial idiotic doctor who failed to,spot the signs, when I got to hospital I was started on insulin and have stayed on it.

I'm struggling not to,say something rude about your team here. What on earth are they playing at? How many tests and re-tests are they going to do?

If it was me, I'd be absolutely insisting on the insulin I needed and telling them that I'd be holding them personally responsible for any damage done to my body in the meantime.

I just can't fathom what on earth they're doing.
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Ya my situation does feel a little surreal tbh,my morning sugars have been amazing the past couple of mornings since starting the basal which feels amazing now all I want it fast acting really wanna up my carbs tbh because before all of this i was a fit 11.10 stone and now weight 10.10 which i don t feel to good at this weight tbh,100 carbs a day i m currently eating
 
wiserkurtious said:
they were negative but they still diagnosed me type 1 due to dka,slim build and all the signs of type 1.ya i feel like i m just getting by atm tbh,june i see my consultant when previously told it d be four weeks ya i feel my situation is unfortunate and tbh i d hold my diabetes team partly accountable to the damage to the back of my eye
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I never had GAD tests. Isn't it correct that some adult onset Type 1s don't have antibodies?

If you need insulin, you need insulin. You're a person not an experiment. When it comes down to it, the most important thing is to get your blood sugar under control.

The lack of urgency in your care shocks me : (
 
ya i ve read that some type 1s don t have antibodies present on diagnosis
 
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