Not being listened to by diabetic nurse

[AbiP22]

I was diagnosed in the beginning of June, I happened to catch it very early and before I had any symptoms as I did a urine dip stick for a suspected UTI. I didn't have any GAD antibodies when I was diagnosed so the doctor said that I was type 2. My onset has been very rapid like type 1, in 3 months I went from my highest blood glucose being 13 to 21. I tried the maximum dose of gliclazide and then added linagliptin without any success, the endo then referred me to the diabetes centre.
I was put on Humulin M3 which I knew wasn't going to work for me, I asked to be put on a basal and bolus regime to which the diabetic nurse said we would discuss it next time. I had a telephone appointment and the nurse told me that my post-meal blood glucose doesn't matter and anywhere up to 18 "should be" fine. She just told me to up my morning dose if my pre meals are above 9 three days in a row, however the intermediate insulin dose is enough but the rapid acting isn't enough to cover meals and that is why I need separate long and short acting insulin.
I just feel like I'm not getting anywhere and would like some advice.

 

[offspin]

I was diagnosed in the beginning of June, I happened to catch it very early and before I had any symptoms as I did a urine dip stick for a suspected UTI. I didn't have any GAD antibodies when I was diagnosed so the doctor said that I was type 2. My onset has been very rapid like type 1, in 3 months I went from my highest blood glucose being 13 to 21. I tried the maximum dose of gliclazide and then added linagliptin without any success, the endo then referred me to the diabetes centre.
I was put on Humulin M3 which I knew wasn't going to work for me, I asked to be put on a basal and bolus regime to which the diabetic nurse said we would discuss it next time. I had a telephone appointment and the nurse told me that my post-meal blood glucose doesn't matter and anywhere up to 18 "should be" fine. She just told me to up my morning dose if my pre meals are above 9 three days in a row, however the intermediate insulin dose is enough but the rapid acting isn't enough to cover meals and that is why I need separate long and short acting insulin.
I just feel like I'm not getting anywhere and would like some advice.

Hi , I understand that frustration kicks in at different threshold but do you feel you may be a little aggressive with out realising you annoyed the medical staff. It's easily done and I am a prime example that I speak my mind.

I hope that I have not offended you.

 

[AbiP22]

Hi , I understand that frustration kicks in at different threshold but do you feel you may be a little aggressive with out realising you annoyed the medical staff. It's easily done and I am a prime example that I speak my mind.

I hope that I have not offended you.

I have been very pleasant to the nurse and have made sure I never raised my voice and have calmly said
what I would prefer. I am passive and a people pleaser and I hate confrontation so I would never be aggressive or rude. I am just frustrated that I feel like I am having really poor control because I don't have the tools I need.

 

[Leadinglights]

I wonder if before you started on insulin had you made any dietary changes to help or was that still not helping.
You could get a free trial of the Libre from Abbott so you can provide evidence of your blood glucose levels. Or do some comprehensive before and 2 hour after meal blood glucose readings together with a food diary to show to your nurse.
Can you ask for referral to a specialist diabetes clinic who will have people more experienced than the nurse at your GP.
You could also ask for feedback and advice from the Diabetes UK helpline tomorrow.

 

[AbiP22]

I wonder if before you started on insulin had you made any dietary changes to help or was that still not helping.
You could get a free trial of the Libre from Abbott so you can provide evidence of your blood glucose levels. Or do some comprehensive before and 2 hour after meal blood glucose readings together with a food diary to show to your nurse.
Can you ask for referral to a specialist diabetes clinic who will have people more experienced than the nurse at your GP.
You could also ask for feedback and advice from the Diabetes UK helpline tomorrow.

I have got a pre-existing disability which means that I couldn't change my diet. I have made comprehensive documentation of pre and post meal blood sugars which are sometimes as high as 21. My diabetic nurse is from the diabetes clinic, I gave her my blood sugar readings and she said that post meal numbers don't matter, when I asked for a target she said you "should be fine" up to 18 mmol/L. However I know that 18 is high.

 

[Leadinglights]

What is it that you can't change about your diet.
Those levels are really very high and are probably giving you some unpleasant symptoms and you would be advised to have a means of testing for ketones with those high levels.
People will be aiming at 4-7mmol/l before meals and no more than 8.5mmol/l 2 hours after meals.
I should be asking for a second opinion.

 

[AbiP22]

What is it that you can't change about your diet.
Those levels are really very high and are probably giving you some unpleasant symptoms and you would be advised to have a means of testing for ketones with those high levels.
People will be aiming at 4-7mmol/l before meals and no more than 8.5mmol/l 2 hours after meals.
I should be asking for a second opinion.

I can't do a low carb diet because my specialist for my disability said it's a bad idea. I know the recommended levels but she is expecting me to not care. I don't want any long term side effects and I'm sick of feeling ill all the time because of high sugars. My ketones have been sat around 0.7, I told her this and she didn't seem to care. I haven't got my next appointment till the 3rd of November. I will phone the helpline tomorrow. Thanks

 

[Pumper_Sue]

I have been very pleasant to the nurse and have made sure I never raised my voice and have calmly said
what I would prefer. I am passive and a people pleaser and I hate confrontation so I would never be aggressive or rude. I am just frustrated that I feel like I am having really poor control because I don't have the tools I need.

Hello Abi,
please do explain to the nurse it is your condition and your life not hers.
As she appears to be treating you like a village idiot, please also explain to her that according to NICE guidelines you are entitled to have the treatment of your choice. If this does not work, then go to PALS.

Is this nurse from the GP practice or from the hospital? GP practice nurses have very little diabetes knowledge, so if this is the case ask for a referral to see a consultant.

 

[AbiP22]

Hello Abi,
please do explain to the nurse it is your condition and your life not hers.
As she appears to be treating you like a village idiot, please also explain to her that according to NICE guidelines you are entitled to have the treatment of your choice. If this does not work, then go to PALS.

Is this nurse from the GP practice or from the hospital? GP practice nurses have very little diabetes knowledge, so if this is the case ask for a referral to see a consultant.

This is the nurse from the diabetes clinic. I know that a long and short acting insulin regime would offer me the ability to gain better blood sugar control. I am willing to inject as many times as necessary to live a healthy life.

 

[Pumper_Sue]

This is the nurse from the diabetes clinic. I know that a long and short acting insulin regime would offer me the ability to gain better blood sugar control. I am willing to inject as many times as necessary to live a healthy life.

I would insist then you see a consultant as the nurse clearly has no understanding of diabetes and the levels your blood sugars need to be at.

 

[Leadinglights]

I can't do a low carb diet because my specialist for my disability said it's a bad idea. I know the recommended levels but she is expecting me to not care. I don't want any long term side effects and I'm sick of feeling ill all the time because of high sugars. My ketones have been sat around 0.7, I told her this and she didn't seem to care. I haven't got my next appointment till the 3rd of November. I will phone the helpline tomorrow. Thanks

Does the specialist for your disability know that you are struggling with blood glucose levels. Maybe they assume low carb is more like Keto rather than a more realistic 130g per day total carbs.

 

[AbiP22]

Does the specialist for your disability know that you are struggling with blood glucose levels. Maybe they assume low carb is more like Keto rather than a more realistic 130g per day total carbs.

I am already under an endo who referred me to that clinic. I find it hard to chew and swallow because of my disability being a degenerative muscle-wasting condition. Because of that I just eat whatever I can get down, so I eat cheese on toast for breakfast and my other meals normally contain rice, potatoes, noodles etc. That is why I am asking for rapid acting insulin so I can carb count and match my units of insulin to my meal.

 

[Pumper_Sue]

I am already under an endo who referred me to that clinic.

Then ring the endo's sectary and explain what is going on and ask for an urgent apt to see him or speak to him.

 

[AbiP22]

Then ring the endo's sectary and explain what is going on and ask for an urgent apt to see him or speak to him.

Thanks for the advice, I wanted to make sure that I wasn't overreacting.

 

[rayray119]

I was diagnosed in the beginning of June, I happened to catch it very early and before I had any symptoms as I did a urine dip stick for a suspected UTI. I didn't have any GAD antibodies when I was diagnosed so the doctor said that I was type 2. My onset has been very rapid like type 1, in 3 months I went from my highest blood glucose being 13 to 21. I tried the maximum dose of gliclazide and then added linagliptin without any success, the endo then referred me to the diabetes centre.
I was put on Humulin M3 which I knew wasn't going to work for me, I asked to be put on a basal and bolus regime to which the diabetic nurse said we would discuss it next time. I had a telephone appointment and the nurse told me that my post-meal blood glucose doesn't matter and anywhere up to 18 "should be" fine. She just told me to up my morning dose if my pre meals are above 9 three days in a row, however the intermediate insulin dose is enough but the rapid acting isn't enough to cover meals and that is why I need separate long and short acting insulin.
I just feel like I'm not getting anywhere and would like some advice.

Correct me if I'm wrong someone but I believe not all type 1 diabetics develop antibody's(like a small percentage might not don't take my word on that though)

 

[AbiP22]

Correct me if I'm wrong someone but I believe not all type 1 diabetics develop antibody's(like a small percentage might not don't take my word on that though)

That is what I thought, especially with how quick it came on and the fact that I don't have any type 2 factors like obesity, cholesterol or family history.

 

[rayray119]

the fact that I don't have any type 2 factors like obesity, cholesterol or family history.

there just things that might make some people at higher risk it doesn't mean other people won't get it.