TYPE 1 NOW

Status
Not open for further replies.
R

rosalindb

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
Pronouns
She/Her
At inital diagnosis 3 years ago I was told I was type 2. After a period of ok fpr 17 months my BG levels kept rising I eventually got appointment with consultant at the hospital, lots of blood taken and now find out I am Type 1. The thing is they are taking their time at sseing my at the diabetes clinic, they cancelled 2 appointments 3 months apart so waiting on 3rd appointment about sorting ot insulin. I am fed up of being told to keep taking gliclacide, its doing nothing now
 
rosalindb said:
At inital diagnosis 3 years ago I was told I was type 2. After a period of ok fpr 17 months my BG levels kept rising I eventually got appointment with consultant at the hospital, lots of blood taken and now find out I am Type 1. The thing is they are taking their time at sseing my at the diabetes clinic, they cancelled 2 appointments 3 months apart so waiting on 3rd appointment about sorting ot insulin. I am fed up of being told to keep taking gliclacide, its doing nothing now
Click to expand...
Maybe a complaint through PALS would be worth while.
You could try your GP to at least get you started with insulin.
 
Leadinglights said:
Maybe a complaint through PALS would be worth while.
You could try your GP to at least get you started with insulin.
Click to expand...
I have tried the GP route, receptionist know it all refuses an appointment becase they have been told by consultant not to prescripe insulin until i have been seen by a nurse-led clinic. Its brick walls all the way
 
rosalindb said:
so far no ketones detected. Finger prick tests start at 23 in the morning and go to 34 after a salad dinner
Click to expand...
This is completely irresponsible to leave you with no treatment with those dangerously high levels. Do keep an eye on ketones but I would call 111 for advice.
 
rosalindb said:
At inital diagnosis 3 years ago I was told I was type 2. After a period of ok fpr 17 months my BG levels kept rising I eventually got appointment with consultant at the hospital, lots of blood taken and now find out I am Type 1. The thing is they are taking their time at sseing my at the diabetes clinic, they cancelled 2 appointments 3 months apart so waiting on 3rd appointment about sorting ot insulin. I am fed up of being told to keep taking gliclacide, its doing nothing now
Click to expand...
Could you inform the consultant that you are still not getting insulin?
Maybe lay it on a bit thick and ask what you should do if you become unwell and what symptoms should you look out for in order to be able to get an ambulance in good time.
I once had a child with what turned out to be chicken pox, but was very unwell with a high fever. The receptionist refused an urgent appointment so I asked where was the best place to park at the hospital so I could get to the A & E department most easily. An appointment mysteriously became available. Sometimes a flanking manoeuvre is the way to deal with a well defended revetment.
 
Drummer said:
Could you inform the consultant that you are still not getting insulin?
Maybe lay it on a bit thick and ask what you should do if you become unwell and what symptoms should you look out for in order to be able to get an ambulance in good time.
I once had a child with what turned out to be chicken pox, but was very unwell with a high fever. The receptionist refused an urgent appointment so I asked where was the best place to park at the hospital so I could get to the A & E department most easily. An appointment mysteriously became available. Sometimes a flanking manoeuvre is the way to deal with a well defended revetment.
Click to expand...
I did pt it on thick at GP, but they are deaf to it. Parking at my local hospital is near impossible lol. so far its just a bit of tiredness I'm having and a 3 week wait
 
rosalindb said:
I did pt it on thick at GP, but they are deaf to it. Parking at my local hospital is near impossible lol. so far its just a bit of tiredness I'm having and a 3 week wait
Click to expand...
Do look at this link for the symptoms of DKA as that would need immediate medical attention.

What is DKA (diabetic ketoacidosis)?

Diabetic ketoacidosis, also known as DKA, is when there is severe lack of insulin in the body. This means the body can’t use sugar for energy, and starts to use fat instead.
www.diabetes.org.uk www.diabetes.org.uk
 
rosalindb said:
so far no ketones detected. Finger prick tests start at 23 in the morning and go to 34 after a salad dinner
Click to expand...

@rosalindb 34 is way too high. Have you tried asking to speak to the Diabetes team you’ve been referred to?

Edited to add - presumably you have a name and contact number from your cancelled appointments? Phone that, tell them how high your blood sugar is, that you’ve had X amount of cancelled appointments and ask if there’s a chance you can be seen sooner or, if they’re too busy, if they could email your GP to ask if he/she could give you some initial insulin.
 
rosalindb said:
so far no ketones detected. Finger prick tests start at 23 in the morning and go to 34 after a salad dinner
Click to expand...
Are you sure the meter read 34? Most don’t read that high. If you don’t have ketones then at least you know there’s no immediate danger but do keep testing ketones and drinking plenty until your appointment. You should be able to ring the diabetes department yourself to see if they can bring it forward.
 
Inka said:
@rosalindb 34 is way too high. Have you tried asking to speak to the Diabetes team you’ve been referred to?

Edited to add - presumably you have a name and contact number from your cancelled appointments? Phone that, tell them how high your blood sugar is, that you’ve had X amount of cancelled appointments and ask if there’s a chance you can be seen sooner or, if they’re too busy, if they could email your GP to ask if he/she could give you some initial insulin.
Click to expand...
Lucyr said:
Are you sure the meter read 34? Most don’t read that high. If you don’t have ketones then at least you know there’s no immediate danger but do keep testing ketones and drinking plenty until your appointment. You should be able to ring the diabetes department yourself to see if they can bring it forward.
Click to expand...
i am a bit foggy it cold be 32
 
Inka said:
@rosalindb 34 is way too high. Have you tried asking to speak to the Diabetes team you’ve been referred to?

Edited to add - presumably you have a name and contact number from your cancelled appointments? Phone that, tell them how high your blood sugar is, that you’ve had X amount of cancelled appointments and ask if there’s a chance you can be seen sooner or, if they’re too busy, if they could email your GP to ask if he/she could give you some initial insulin.
Click to expand...
tried that, they said it would be fine for the 3 weeks i have to wit
 
rosalindb said:
tried that, they said it would be fine for the 3 weeks i have to wit
Click to expand...
Good to have that reassurance then, the lack of ketones does mean that whilst high bg isn’t ideal it’s not immediately dangerous. You’ll need to stay high for a while after you have the insulin too as blood sugars have to be dropped slowly to avoid causing damage to the eyes.
 
Oh my goodness @rosalindb - what an awful position to have been put in 😱

You might want to call the Diabetes UK helpline tomorrow to get their advice. A T1 being left without insulin for weeks at a time - even if they have been misdiagnosed in the past. Perhaps especially so!

You can call 0345 123 2399 Mon-Fri 9-6. They may be able to offer you some support and advocacy.
 
Status
Not open for further replies.
Back
Top