# Possible allergy



## Rosiecarmel (Jul 6, 2016)

To Victoza! I'm waiting for a call back from my GP to discuss this but this morning was my second Victoza injection. Whilst the injection itself did not hurt at all, both injection sites (both left side tummy) stung badly after and haven't stopped since. I feel extremely nauseous and a little dizzy.

I'm hoping my GP can help me on this. I know the nausea is a side effect of the Victoza but this is awful. Checked my blood sugar and they're 19.2 which is normal for me right now. The stinging came on about ten mins after giving the injections and hasn't stopped


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## Diabeticliberty (Jul 6, 2016)

Blood sugars 19.2mmols normal?????? Rosie this has got to stop. You are gonna keel over and who could blame you if you did? All that aside which sounds a bit dismissive and I don't mean it at all like that, have you been able to find any cases of people being allergic to Victoza? Oh bugger this, why the hell won't they just give you the bloody insulin that you so desperately need? At this point I would be putting my fist through my doctors door and dragging the stupid individual through it


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## grovesy (Jul 6, 2016)

Sounds like it to me !


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## Ljc (Jul 6, 2016)

Diabeticliberty said:


> Blood sugars 19.2mmols normal?????? Rosie this has got to stop. You are gonna keel over and who could blame you if you did? All that aside which sounds a bit dismissive and I don't mean it at all like that, have you been able to find any cases of people being allergic to Victoza? Oh bugger this, why the hell won't they just give you the bloody insulin that you so desperately need? At this point I would be putting my fist through my doctors door and dragging the stupid individual through it


I'd be quite happy to join you in this venture.


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## Rosiecarmel (Jul 6, 2016)

I am on my way to work now. I feel absolutely terrible. If they send me home early I'm going to go to a&e because I feel absolute rotten. I am most definitely not myself. I can't even summon up the energy to smile today. I feel like if I moved too quickly I'd definitely throw up 

I've Googled Victoza allergy and not found a right lot of useful info to be honest. I'm not itchy or having trouble breathing which is what the Victoza website states is an allergic reaction.


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## Ljc (Jul 6, 2016)

Hi Rosie . I think you really need to go to A &E  rather than going to work.
Your health must come first.


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## grovesy (Jul 6, 2016)

It might not be what they class as an allergy but to me that is a reaction! Good luck !


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## Northerner (Jul 6, 2016)

Rosiecarmel said:


> I am on my way to work now. I feel absolutely terrible. If they send me home early I'm going to go to a&e because I feel absolute rotten. I am most definitely not myself. I can't even summon up the energy to smile today. I feel like if I moved too quickly I'd definitely throw up
> 
> I've Googled Victoza allergy and not found a right lot of useful info to be honest. I'm not itchy or having trouble breathing which is what the Victoza website states is an allergic reaction.


Is it still stinging Rosie? Is it red and swollen at all where you injected? I know some people do react badly with nausea, but generally that is when they increase the dose from 0.6 to 1.2  Hope you feel better very soon, it really isn't fair when you are doing everything you can!


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## Rosiecarmel (Jul 6, 2016)

Ljc said:


> Hi Rosie . I think you really need to go to A &E  rather than going to work.
> Your health must come first.



I think you may be right. I'm only 10 mins away from work now so I may just go in now to tell them how unwell I am and that I can't do the shift. If a&E don't take my seriously I might actually explode


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## Rosiecarmel (Jul 6, 2016)

Northerner said:


> Is it still stinging Rosie? Is it red and swollen at all where you injected? I know some people do react badly with nausea, but generally that is when they increase the dose from 0.6 to 1.2  Hope you feel better very soon, it really isn't fair when you are doing everything you can!



It's still stinging but I don't think it's swollen


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## Stitch147 (Jul 6, 2016)

GO TO A&E!!!! Sorry for shouting.


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## Jonsi (Jul 6, 2016)

Hi Rosie, I was on Victoza for the last couple of years (at least) and found it had no side-effect, and little or no effect at all by the end. If 19.2 is normal for you right now and this is only your 2nd injection of Victoza might this not be something that pre-existed and the Victoza is just coincidental? My levels have been as high as yours consistently recently for a few months and I felt like sh... _oops! _ awful too - even after eating, that's if . You really need to get some intervention now ...I mean, like, now! This afternoon. Work won't thank you for keeling over on them, you could injure yourself if you collapsed (my H&S hat on) so go now, don't wait. Camp at the GP Surgery or A&E if you have to or, if there's a local drop-in centre, make a nuisance of yourself there. Be selfish.


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## grovesy (Jul 6, 2016)

Rosie was concerned with stinging at the injection site!


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## trophywench (Jul 6, 2016)

I hope she's at A&E.  This is bloody well ridiculous and I'm even more concerned about her now than I have been and I didn't think that was feasible ......


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## Jonsi (Jul 6, 2016)

grovesy said:


> Rosie was concerned with stinging at the injection site!


I know ...but she was also asking about side effects of Victoza (Liraglutide) and, as I was injecting it for a good few years and Byetta for years before that, I thought I'd mention how it was for me. Also, as she said she was on her way to work and I'm a H&S professional, I thought I'd give her some free H&S advice about being at work when she's clearly unwell. Problem??


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## Rosiecarmel (Jul 6, 2016)

I'm at a&E now, thanks everyone for giving me the kick up the arse I needed! They did my sugars and it was 18.3 and I just went yeah that's normal. He was really shocked.

I'm waiting to see a doctor now to examine the injection sites which still are sore and discuss this!


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## Northerner (Jul 6, 2016)

Rosiecarmel said:


> I'm at a&E now, thanks everyone for giving me the kick up the arse I needed! They did my sugars and it was 18.3 and I just went yeah that's normal. He was really shocked.
> 
> I'm waiting to see a doctor now to examine the injection sites which still are sore and discuss this!


Hoping the problem can be resolved for you Rosie


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## Northerner (Jul 6, 2016)

Jonsi said:


> I know ...but she was also asking about side effects of Victoza (Liraglutide) and, as I was injecting it for a good few years and Byetta for years before that, I thought I'd mention how it was for me. Also, as she said she was on her way to work and I'm a H&S professional, I thought I'd give her some free H&S advice about being at work when she's clearly unwell. Problem??


Hi Jonsi, thanks for sharing your experiences with Victoza - always useful for anyone who may be reading and on, or starting Victoza, not just in this particular case  Rosie's problems with her levels appear to lie with the inability of her team to provide her with an appropriate treatment in a sensible timescale, unfortunately


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## grovesy (Jul 6, 2016)

Glad you have gone to A& E and hope you get sorted maybe they will get the Diabetic Team to see you!


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## Carolg (Jul 6, 2016)

Good luck Rosie. Hope you get the support you need.


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## Stitch147 (Jul 6, 2016)

Fingers crossed for you Rosie. X


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## Amigo (Jul 6, 2016)

Really hope somebody with some higher degree of diabetic understanding sees you and moves on this Rosie. These long term highs are doing damage and simply cannot be allowed to continue. It seems to be an endless process of procrastination and wait see, try this, see if jumping in a puddle might help rubbish! 

A while ago I strongly suggested you put this experience down on paper and send it to the Practice Manager. Now I'd commit it to paper and send it to a medical negligence solicitor! 

If you were my daughter I wouldn't be knocking on the GP's door, I'd be knocking on his head! 

But main thing...I hope you're ok! Let us know.


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## AndBreathe (Jul 6, 2016)

This is probably one time a decent tantrum, plus being sick all over someone would be a good thing,............ for Rosie at least.  I could never have been as accepting as Rosie.

@Rosiecarmel - Can you achieve anything via Occupational Health?  If today doesn't lead anywhere meaningful, I would seriously consider it.  Although OH can't start you on insulin, they can refer you to the relevant professionals, which, in my view, should be the Diabetes Clinic or an Endocrinologist.


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## jocat (Jul 6, 2016)

Hope a and e are prepared to move your care forward and you feel a bit better soon, know it doesn't happen instantly, in my case even insulin took a while but I'm glad I'm on it now
Take care 
Jo x


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## Ljc (Jul 6, 2016)

Sorry for late reply Rosie, I'm so glad you went to A&E.
I hope that they are looking after you really well and that you will soon start to feel much better soon.
I like everyone else here am really worried about you , I'm guessing it's going to be a while before you can let us know how you are but untill you can and just incase you are able to read this. I'm sending you lots of good vibes and wishing you well.


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## Mark Parrott (Jul 6, 2016)

Hope you get sorted asap, Rosie.  You have been through so much and the so called professionals have been bloody useless.


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## trophywench (Jul 6, 2016)

I hope she's been admitted and is on a sliding scale.  I wouldn't normally wish this on anyone, but there ARE exceptions .......


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## Rosiecarmel (Jul 6, 2016)

Thank you everyone. I really do appreciate all the support and advice you've given me since I joined!! I've just got home now. I was given IV fluids and had my blood sugars checked about six times. Loads of blood tests and urine samples including a "venous blood gas" test whatever that means. Came back saying I was very dehydrated due to my high BGs. I was looked after very well and EVERYONE, including health care assistants, said "are you sure you're T2?!"

I've been discharged cos they lowered my BGs to 11 with hours of fluids and given strict advice to take tomorrow off and go to my doctors. I've been given a letter to take to my GP basically explaining why I went to a&e, what tests they did and at the end there's a brief explanation saying the consultants recommendation is to stop Victoza and be referred to start insulin as soon as possible. She's even put in it to do more tests querying type 1 as she doesn't believe I'm T2. I will be ringing the doctors bang on 8:30am and demanding an appointment waving that letter in their face!!

I should add she did tell me to come back to a&E if the doctor ignores the letter!!

I do feel like I've been dragged through a bush backwards though!


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## Mark Parrott (Jul 6, 2016)

Its good to hear you were well looked after & they got you BG down. Good luck at the docs tomorrow.


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## HOBIE (Jul 6, 2016)

Being dehydrated with high BG really takes it out of you !  Hope things improve


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## Ljc (Jul 6, 2016)

I'm so glad they looked after you well, done loads of tests and are of the same opinion as us that you are not T2
I doubt if you will have any trouble at the docs now you have that letter from the hospital but if you do , you know what you must do now.
Do let us know how you get on.

Now please try and get some rest and IMO I think you should take a few days off


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## grovesy (Jul 6, 2016)

Good luck!


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## Diabeticliberty (Jul 6, 2016)

This is really good news Rosie. Sounds like you are finally getting somewhere. I am sorry if my posts seemed like I was screaming instructions at you but it is really frustrating to read about how complete crappy they have been treating you. You do not deserve it, at least now your bloods are down a bit and hopefully things will turn for you


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## Martin Canty (Jul 6, 2016)

This is great Rosie, glad to se that you are doing better and that the A&E Dr. knew what they were talking about.


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## Lindarose (Jul 6, 2016)

Hi Rosie Just home from work and catching up on here. So sorry you're still struggling to get the help you need to control your BGs. 
Anyway after today and your dr app tomor hopefully you'll get insulin and start to feel better. Good luck.


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## trophywench (Jul 6, 2016)

Thank the Lord you have at LAST met someone with working brain cells Rosie - now - get some sleep!


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## Amigo (Jul 7, 2016)

Relieved to hear this Rosie. Hope it starts to progress from tomorrow. Hope you sleep well after your ordeal x


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## Northerner (Jul 7, 2016)

Rosiecarmel said:


> Thank you everyone. I really do appreciate all the support and advice you've given me since I joined!! I've just got home now. I was given IV fluids and had my blood sugars checked about six times. Loads of blood tests and urine samples including a "venous blood gas" test whatever that means. Came back saying I was very dehydrated due to my high BGs. I was looked after very well and EVERYONE, including health care assistants, said "are you sure you're T2?!"
> 
> I've been discharged cos they lowered my BGs to 11 with hours of fluids and given strict advice to take tomorrow off and go to my doctors. I've been given a letter to take to my GP basically explaining why I went to a&e, what tests they did and at the end there's a brief explanation saying the consultants recommendation is to stop Victoza and be referred to start insulin as soon as possible. She's even put in it to do more tests querying type 1 as she doesn't believe I'm T2. I will be ringing the doctors bang on 8:30am and demanding an appointment waving that letter in their face!!
> 
> ...


Oh this is great news Rosie  It makes such a difference when you get to see someone actually applying a bit of thought to your situation instead of just reading from a rule book! Good luck, I hope you are given an appointment straight away and they do NOT even raise the possibility that there will now be a 3 month delay before you get insulin! 

Hope you have managed to get some rest, and that today is the start of you getting those levels under good control and getting your health and energy back  Remember, no mixed insulins - you don't want to go through that battle as well! Goood luck!


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## KookyCat (Jul 7, 2016)

That great news Rosie, well not the reaction of course (hope you're feeling OK this morning), but at least you've encountered a person with some decent knowledge of diabetes.  Get that letter in there to that GP and don't move until you get somewhere.  Best of luck  

When this is done and you've got some decent treatment think very carefully about making a complaint, regardless of what type you are, that surgery has not met your needs and at best is following guidelines far too rigidly.


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## Stitch147 (Jul 7, 2016)

Glad to hear that you are back home Rosie. Hope your gp follows the A&E drs recommendations. Thinking of you hun. X


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## AndBreathe (Jul 7, 2016)

Rosiecarmel said:


> Thank you everyone. I really do appreciate all the support and advice you've given me since I joined!! I've just got home now. I was given IV fluids and had my blood sugars checked about six times. Loads of blood tests and urine samples including a "venous blood gas" test whatever that means. Came back saying I was very dehydrated due to my high BGs. I was looked after very well and EVERYONE, including health care assistants, said "are you sure you're T2?!"
> 
> I've been discharged cos they lowered my BGs to 11 with hours of fluids and given strict advice to take tomorrow off and go to my doctors. I've been given a letter to take to my GP basically explaining why I went to a&e, what tests they did and at the end there's a brief explanation saying the consultants recommendation is to stop Victoza and be referred to start insulin as soon as possible. She's even put in it to do more tests querying type 1 as she doesn't believe I'm T2. I will be ringing the doctors bang on 8:30am and demanding an appointment waving that letter in their face!!
> 
> ...



Rosie - Please do take a copy of that letter and put it in a safe place.  If you don't have a scanner/copier to hand, then take a photograph of it with your phone/tablet or camera.  As the letter is addressed to your GP (I'm assuming it is), it will be taken from you to be imaged and added to your records.

If you don't get immediate support and action, then go back to A&E, as they already suggested, but please also go through your manager, HR or directly to OH and ask if they can leverage any action for you.  Surely they have a vested interest in keeping you well and fit for work.

Should you be looking for an urgent referral to or from OH, your letter will be your leverage.  Sometimes we have to deploy everything within our power to get what we need.  You shouldn't have to, but sometimes you do.

Good luck with it all.


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## Rosiecarmel (Jul 7, 2016)

AndBreathe that's a very good idea thank you! I have now taken a picture of it and send it to my mum just so she's got a copy incase I lose mine.


I have just had a phone call from my GP who told me to hold on to my Victoza pens for now but definitely don't take any. He's ringing the diabetic nurse this afternoon and told me that if she doesn't get in touch within 7 days to come see him and he'll sort it out himself. He told me to monitor my sugar levels more regularly and has sent a prescription of 2 pots of strips to the chemist just so I don't run out. In the meantime, he said, if I feel that poorly again then I should go back to a&e.

I have a God awful headache today but at least I don't feel sick anymore. He wants me to hand the letter in at reception so he can have it and he's gonna fax a copy over to the DSN so she's got one too. 

I was pretty against starting the Victoza to be honest so part of me thinks it looks dodgy two days after starting it I suddenly can't take it anymore. But that's not my fault. It's not like I WANT to feel this unwell!!


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## Pumper_Sue (Jul 7, 2016)

Rosiecarmel said:


> I have just had a phone call from my GP who told me to hold on to my Victoza pens for now but definitely don't take any. He's ringing the diabetic nurse this afternoon and told me that if she doesn't get in touch within 7 days to come see him and he'll sort it out himself.



I may be missing something here Rosie but why is he saying 7 days you needed sorted months ago not yesterday and not 7 days time.
Your treatment is my opinion negligent beyond belief. Why oh why did the hospital not keep you in and put you on insulin then and there?


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## Northerner (Jul 7, 2016)

I'm also very dismayed that the GP is squeezing another 7 days out of this. I'm guessing this is as far as he thinks he can stretch the possible non-availability of the nurse  I hope that she comes straight back to you and gets you sorted as soon as possible. 

It really does beggar belief the way they have treated your situation Rosie, so sorry you have had to endure all of this  Just imagine how someone who doesn't have your tenacity would go on - hardly bears thinking about  They seriously need to review their procedures  Keep hydrated, hope the headache goes soon and you have more progress to report very soon {{{HUGS}}}


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## Rosiecarmel (Jul 7, 2016)

Well, lowering my BGs to 11mmol didn't last very long....


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## Martin Canty (Jul 7, 2016)

Sorry to see that, perhaps another trip to A&E is in order as your GP is just not taking this seriously.....


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## AndBreathe (Jul 7, 2016)

Rosiecarmel said:


> Well, lowering my BGs to 11mmol didn't last very long....View attachment 1547


Back to A&E with you Rosie, I would have thought.  Sounds like you need insulin now (like you don't know that already!).  Wrk with what you've got.  You have a letter telling you to return if it doesn't go right.  It's not gone right.

I would also email that letter to your line manager (and that photo you just posted) and ask them to intervene with OH, and work a two pronged attack.

I know you feel rubbish and it's he last thing you want to do, but you can't go on like this.  Enough was enough some weeks ago.  I posted yesterday that sometimes a tantrum, and ideally being sick all over someone could get some traction.  I know actually managing to vomit on someone is a big ask, but were I closer, I'd happily have the tantrum on your behalf.


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## Amigo (Jul 7, 2016)

I agree with the others. Why is he trying to squeeze another 7 days out of this? Keep more records? For goodness sake how much more 'evidence' does he need?

I feel for you Rosie. We can give you all the insistent advice in the world but it sounds like trying to move mountains getting your GP to prescribe the insulin you clearly need. Get back to A&E as they suggested if this continues. Poor you, I can't even contemplate levels that high


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## AJLang (Jul 7, 2016)

Rosie I'm so sorry that I haven't been commenting about this as much as I should. The whole situation is ridiculous and your GP is, in my opinion, being negligent. As you were dehydrated yesterday and are now 21.3 I sincerely hope that you're on your way to A&E and that they get you put on insulin straightaway and referred to a diabetic consultant at the hospital. I am sorry that you are going through this xxxx


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## Rosiecarmel (Jul 7, 2016)

I am waiting an hour before going to a&E just because I'm waiting to see if my mum can come with me. She lives a two hour drive from me but she said she's going to try get out of her commitments and meet me there tonight. She used to be a headteacher of a primary school and now she's retired I think she misses being bossy so it will work in my favour!! She said she'll get back to me in an hour and let me know.


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## Martin Canty (Jul 7, 2016)

In the meantime start drinking plenty of water


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## AJLang (Jul 7, 2016)

I'm glad that your mum is going with you. Very good point Martin about drinking water.


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## KookyCat (Jul 7, 2016)

Good God, why the hell would it take seven days for her to contact you.  What is the matter with them?  No seriously I'm wondering if they're actually medically qualified.  Sorry must stay calm, hope your Mum can go with you a bit of the head teacher approach will hopefully do the trick.  This is really quite ridiculous


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## Rosiecarmel (Jul 7, 2016)

Mum can't come unfortunately but she said if they start fobbing me off to ring her lol!! Looks like I'm in for a fun night. Might as well ring in sick now as I definitely won't be able to go in at 7am! Will keep you all updated xx


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## Rosiecarmel (Jul 7, 2016)

I'm also shoving some clean clothes and pj's in my bag just in case they keep me over night!! I'm hoping they will tbh. As much as I hate being in hospital, you're all right and I need help NOW not in 7 days


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## grovesy (Jul 7, 2016)

Everything crossed to hope you will get sorted!


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## Robin (Jul 7, 2016)

Good luck, Rosie.


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## Amigo (Jul 7, 2016)

Good luck Rosie. I'd be amazed if they didn't keep you in this time hun x


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## Stitch147 (Jul 7, 2016)

Good luck Rosie. I also hope they keep you in and get you sorted. X


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## khskel (Jul 7, 2016)

Good luck. I wouldn't usually say this but I hope they give you some intravenous insulin until you're stable


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## Lindarose (Jul 7, 2016)

Hope you finally get things sorted out Rosie. Good luck


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## Northerner (Jul 7, 2016)

Good luck Rosie


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## Ljc (Jul 7, 2016)

Rosie. I hope the hospital starts you on insulin now.
Once you are and you feel better, I suggest looking for another GP practice. 
When you can , let us know how you get on.


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## jocat (Jul 7, 2016)

Good luck Rosie, stay strong even though I know you don't feel like it, take care
Jo x


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## Rosiecarmel (Jul 7, 2016)

I've just seen the consultant who said she's gonna chat to her medical team but she thinks she's gonna just send me home. F@#!?@g brilliant. She said this is best managed by the community diabetic team and completely ignored me when I said I need insulin asap and I can't wait until AUTUMN for insulin which is what the DSN said....


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## Rosiecarmel (Jul 8, 2016)

She's come back to say they're going to admit me and give me IV drugs and taking me up to the ward very soon. Maybe now I'll finally get help!!


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## Ljc (Jul 8, 2016)

Phew, that took them long enough. I sincerely hope that this time they will put you on insulin.
I'm keeping everything cross d for you.


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## Rosiecarmel (Jul 8, 2016)

Well I've had the worst three hours sleep of my life. Feel like I've been hit by a car and still have my IV in... Now laying here awake waiting for the diabetes consultant to come see me around 9am. The ward doctor thinks that the hospital diabetes team will want to see me as an outpatient and she said "there's a possibility your medication will change" but couldn't elaborate further.


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## khskel (Jul 8, 2016)

Fingers crossed


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## grovesy (Jul 8, 2016)

everything crossed!


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## Northerner (Jul 8, 2016)

Rosiecarmel said:


> Well I've had the worst three hours sleep of my life. Feel like I've been hit by a car and still have my IV in... Now laying here awake waiting for the diabetes consultant to come see me around 9am. The ward doctor thinks that the hospital diabetes team will want to see me as an outpatient and she said "there's a possibility your medication will change" but couldn't elaborate further.


They never give anything away!  At least you are getting to see a consultant, I hope they recognise you are not a straightforward case and you finally get help that actually _helps! _{{{HUGS}}}


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## AJLang (Jul 8, 2016)

Thinking of you. I so hope that they get you started on insulin today xxx


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## Ljc (Jul 8, 2016)

Hi Rosie,  I hope They get you started on insulin today.
I know mornings are busy times on wards, noisy too but try to get as much rest as you can. 
When the consultant comes round don't hold anything back. 
{{{{hugs}}}}


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## Mark Parrott (Jul 8, 2016)

Everything crossed for you, Rosie


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## Rosiecarmel (Jul 8, 2016)

Had a bit of a cry this morning just cos I feel so crap and I'm so frustrated (and I've barely slept)

 Doctor is on the ward now so I'll keep you updated once I know what's happening!


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## Robin (Jul 8, 2016)

Rosiecarmel said:


> Had a bit of a cry this morning just cos I feel so crap and I'm so frustrated (and I've barely slept)
> 
> Doctor is on the ward now so I'll keep you updated once I know what's happening!


Not surprised! May be a good thing to show the doctors just how you feel, and not put too brave a face on it, when they come round.


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## Rosiecarmel (Jul 8, 2016)

So the diabetic nurse is starting me on humulin 1 basal insulin today. She's also giving me all the diabetic education this morning so I can hopefully go home with basal insulin. She said I can't go home til I get the education but she's gonna try do it asap so I'll be home early afternoon.

We discussed me wanting bolus too and she said I'll have to see the hospital diabetes team every few days or something to titrate my basal to the best level and then we can move on to bolus and titrate me off my oral meds.

I feel a lot better, even if I have cried in front of all the nurses and two doctors. Oh and the pharmacist who only wanted to check my meds lol!


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## Diabeticliberty (Jul 8, 2016)

Ask them if they appreciate the potential long term damage extended periods of very high nllod sugars may be causing you. Ask them if they appreciate the effect this is having on your state of mind. Ask them if they appreciate the negative effect this island having on your lifestyle. I respectfully suggest you ask them To 'FFS DO SOMETHING TO HELP YOU '

I really hope that you get a result. We are all thinking of you


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## Amigo (Jul 8, 2016)

Great result Rosie! Don't worry about the tears, they're entirely normal and a combination of exhaustion and frustration. Things will improve now! x


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## Diabeticliberty (Jul 8, 2016)

Whoops sorry, posted that last message as you were posting yours


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## Annette (Jul 8, 2016)

Good to hear Rosie. Now jump through the hoops so they can say you had all the education they deem necessary, then come away and teach yourself as you are totally capable of doing.
Do not leave without an appointment to see the hospital team, and do not allow them to discharge you to the community team who have done f@ck all to help you!


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## Robin (Jul 8, 2016)

Oh I'm really glad you're getting sorted at last. I guess they will be conservative with your doses to begin with, to bring your levels down safely, whooshing down quickly from sustained high levels is incredibly bad for the body!


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## khskel (Jul 8, 2016)

Sounding promising


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## Rosiecarmel (Jul 8, 2016)

Yeah she said it's going to be done slowly but at least I know it's going to be done!! Starting off at 10u insulin on a morning and I've got an appointment for 12pm on Monday to go back to the diabetic clinic. She even said she doesn't know why I haven't been started on insulin before but I'm not going to be discharged back to my GP until I can manage my own insulin myself


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## jusme (Jul 8, 2016)

At last ...... what more can I say.  Congratulations on finally getting what you need and well done for the patience you have had with everyone.

Best wishes

jusme


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## Northerner (Jul 8, 2016)

Progress  My question would be though, why Humalin? Why not Levemir, as is currently being recommended for basal/bolus regimes? I don't know much about Humalin, perhaps they could explain why it is their preferred choice?


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## Ljc (Jul 8, 2016)

Rosiecarmel said:


> Yeah she said it's going to be done slowly but at least I know it's going to be done!! Starting off at 10u insulin on a morning and I've got an appointment for 12pm on Monday to go back to the diabetic clinic. She even said she doesn't know why I haven't been started on insulin before but I'm not going to be discharged back to my GP until I can manage my own insulin myself


Brilliant news that you are *not* being discharged back to that %#*$% GP and nurse anytime soon 
It's good they are starting carefully with you and hopefully you should start to feel much better soon.


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## Rosiecarmel (Jul 8, 2016)

Northerner said:


> Progress  My question would be though, why Humalin? Why not Levemir, as is currently being recommended for basal/bolus regimes? I don't know much about Humalin, perhaps they could explain why it is their preferred choice?



I'm not sure, she didn't say. I shall ask when I see her before I get discharged! Is there much difference?


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## Northerner (Jul 8, 2016)

Rosiecarmel said:


> I'm not sure, she didn't say. I shall ask when I see her before I get discharged! Is there much difference?


It's an older type of insulin, with a different 'action profile'. This page explains all the action profiles of common insulins:

http://www.mydiabetesmyway.scot.nhs...title=Insulin Action Profiles&thetype=leaflet


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## Diabeticliberty (Jul 8, 2016)

There is a link to a comparison chart  HERE 

I personally take Humulin and have never had any problems with it. I would add however that I was diagnosed 30 odd years ago and at that time it was 'sold to me' as being state of the art. I dare say that insulin production has moved on by about 10,000 years since then . I would also add that Humulin does work on a basal bolus basis. When I tried that system some years after being diagnosed I really could not get on with it and went back to mixing Humulin - I and Humulin - S in a syringe and backing this up with correctional doses of Humulin - S (fast acting) as required


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## Copepod (Jul 8, 2016)

I've been using Humalin I for over 20 years, once a day for first 6 years or so, now 2 doses in each 24 hour period. It suits me fine. As it costs half as much as Lantus or Levemir, I reckon it makes sense to try the cheapest first. If it doesn't suit a person, then it makes sense to try a more expensive one. For me, often working irregular hours and having irregular patterns of activity (which is what Rosie encounters with her shifts), 2 shots per day gives me more chance to adjust at short notice.


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## Northerner (Jul 8, 2016)

Copepod said:


> I've been using Humalin I for over 20 years, once a day for first 6 years or so, now 2 doses in each 24 hour period. It suits me fine. As it costs half as much as Lantus or Levemir, I reckon it makes sense to try the cheapest first. If it doesn't suit a person, then it makes sense to try a more expensive one. For me, often working irregular hours and having irregular patterns of activity (which is what Rosie encounters with her shifts), 2 shots per day gives me more chance to adjust at short notice.


Fair enough!


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## trophywench (Jul 8, 2016)

I lost all my hypo symptoms on Humulin and had to pack up driving, later I almost brought us both down while pillion on one of the bikes, by hanging off the side when hypo.  Of course Pete kept asking if I was alright and of course I insisted I was ....

But what suits one doesn't suit another.

It's insulin - Hoo bloody Rah.  Just get it in you and get it working!


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## pav (Jul 8, 2016)

Good news that you are finally getting things sorted and not being released back into the care of your GP until then.


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## grovesy (Jul 8, 2016)

Glad to hear you are finally getting sorted hope this works for you! At least you have an appointment for follow up!


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## Pumper_Sue (Jul 8, 2016)

Thank goodness things are beginning to move at last for you Rosie.


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## Bloden (Jul 8, 2016)

I'm having a little cry for you, Rosie.  I can't believe how long you've had to wait - and suffer - to get some action. (((Hugs))) and cheers!  Here's to insulin and feeling well at last.


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## jocat (Jul 8, 2016)

Hi I'm on humulin I for my basal, twice a day then novorapid for bolus. The humulin I has been acting a bit strange for the past month but can't quite put my finger on it, it could be me!! 
Good luck Rosie, at least they are starting you on insulin, it all happened very quickly all at once for me
Take care
Jo x


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## palmoff (Jul 8, 2016)

Well done rosie, you'll start to feel a lot better very soon.
You have started insulin in very much the same way I did, and I had the same experience and still do of useless doctors.
Hey ho though sorted now so all's good, what panics me is being told to go on to oral meds that would be terrible.

Anyway I'm glad for you its a royal pain knowing you need insulin and having Gp's fannying about thinking they are diabetic consultants.


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## Flower (Jul 8, 2016)

Good grief Rosie, what a horrible battle you've had to get to this point, it beggars belief. Thank goodness you were able to sort things out for yourself and get someone to realise what you needed after nearly 12 months of feeling so unwell.

I hope you start to feel a lot better soon with insulin -whatever kind- on board. You deserve a gold medal for what you've been through whilst studying and working at the same time. I really hope things start to stabilise for you. Well done Rosie for battling on through.


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## Mark Parrott (Jul 8, 2016)

So glad things are finally looking positive.


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## Rosiecarmel (Jul 8, 2016)

Well I'm staying in tonight as well. My blood sugars are too high to be discharged and they can't discharge me anyway without having done the insulin injection myself in front of a nurse and since I'll be taking it in a morning, they want me to wait until then.

The nurse said even if I wasn't put on insulin, they wouldn't discharge me with blood sugars of 20mmol and above which I suppose at least means they're taking care of me!


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## Martin Canty (Jul 8, 2016)

Finally someone is taking care of you, so sorry to hear of your take of woes.....


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## grovesy (Jul 8, 2016)

At least you are being taken seriously!


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## Mark Parrott (Jul 8, 2016)

Probably a good thing theyre keeping you in. Rather that than rushing through things & chucking you out.


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## Northerner (Jul 8, 2016)

Rosiecarmel said:


> Well I'm staying in tonight as well. My blood sugars are too high to be discharged and they can't discharge me anyway without having done the insulin injection myself in front of a nurse and since I'll be taking it in a morning, they want me to wait until then.
> 
> The nurse said even if I wasn't put on insulin, they wouldn't discharge me with blood sugars of 20mmol and above which I suppose at least means they're taking care of me!


Did you point out that that is pretty much where your levels have been for months whilst everyone ignored your pleas for help?  Hope you have a better night tonight and manage to get some much needed rest {{{HUGS}}}


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## Rosiecarmel (Jul 8, 2016)

Northerner said:


> Did you point out that that is pretty much where your levels have been for months whilst everyone ignored your pleas for help?  Hope you have a better night tonight and manage to get some much needed rest {{{HUGS}}}



Yep!! Everyone on the ward, doctors included, cant believe I wasn't already on insulin and that my levels were allowed to be so high for so long! I apologised for crying and the diabetic nurse from the hospital NOT community told me I'd done exactly the right thing by coming into hospital because now it means I can get sorted. Made me feel a lot better to be honest. The health care assistants have commented that I seem a lot brighter than I did yesterday and although I still feel crap, I look better... Like relieved! Maybe because I am!!

I've got another letter to give to my GP which is basically like an insulin "menu" and she's ticked what I need... Pens, needles, glucogel and sharps bin and I'm to give it to him and he HAS to add it all to my repeat prescription. Luckily I can just hand it in at the surgery reception so I don't even have to see him lol!


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## Diabeticliberty (Jul 8, 2016)

Rosiecarmel said:


> Yep!! Everyone on the ward, doctors included, cant believe I wasn't already on insulin and that my levels were allowed to be so high for so long! I apologised for crying and the diabetic nurse from the hospital NOT community told me I'd done exactly the right thing by coming into hospital because now it means I can get sorted. Made me feel a lot better to be honest. The health care assistants have commented that I seem a lot brighter than I did yesterday and although I still feel crap, I look better... Like relieved! Maybe because I am!!
> 
> I've got another letter to give to my GP which is basically like an insulin "menu" and she's ticked what I need... Pens, needles, glucogel and sharps bin and I'm to give it to him and he HAS to add it all to my repeat prescription. Luckily I can just hand it in at the surgery reception so I don't even have to see him lol!




Personally I would pin it to his eyeball or maybe somewhere a bit lower down . Do you not think that a change of GP and surgery might be the next thing to do once you get yourself in a better place? I binned my previous doctor for far less serious sins than the ones that your doctor has committed against you. It is extremely easy to do. You do not even need to wee your current doctor to do it. Just find a different practice (I asked my pharmacist to recommend one) Ask them to take you in and a couple of very simple forms to complete.


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## Rosiecarmel (Jul 8, 2016)

Diabeticliberty said:


> Personally I would pin it to his eyeball or maybe somewhere a bit lower down . Do you not think that a change of GP and surgery might be the next thing to do once you get yourself in a better place? I binned my previous doctor for far less serious sins than the ones that your doctor has committed against you. It is extremely easy to do. You do not even need to wee your current doctor to do it. Just find a different practice (I asked my pharmacist to recommend one) Ask them to take you in and a couple of very simple forms to complete.



Funnily enough there is a GP surgery literally opposite my house. I have stayed at the one a 20 min walk away because of one doctor there, plus the chemists are wonderful and really look after me. I am considering changing now though...


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## Bloden (Jul 8, 2016)

Diabeticliberty said:


> Personally I would pin it to his eyeball or maybe somewhere a bit lower down . Do you not think that a change of GP and surgery might be the next thing to do once you get yourself in a better place? I binned my previous doctor for far less serious sins than the ones that your doctor has committed against you. It is extremely easy to do. You do not even need to wee your current doctor to do it. Just find a different practice (I asked my pharmacist to recommend one) Ask them to take you in and a couple of very simple forms to complete.


A change of is deffo on the cards, Rosie. Your current lot are shamefully useless and pointless, and deserve to be demoted to bedpan emptying duty for a while.  You're very courageous to have put up with their slackness for so long...


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## pav (Jul 8, 2016)

Rosiecarmel said:


> Funnily enough there is a GP surgery literally opposite my house. I have stayed at the one a 20 min walk away because of one doctor there, plus the chemists are wonderful and really look after me. I am considering changing now though...



worth looking at changing doctors, I would get your new meds on your repeat script and get some stock in, and then look at the docs available and ask what there diabetes care is like. Not quite as bad as yours levels but running in the mid to high teens and I have been asking for insulin for the past couple or so years and getting no where and no decent diabetic care around me, at least you are now being looked after, best wishes for the future.


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## KookyCat (Jul 8, 2016)

Good news Rosie, at least there's been some action at last.  Do what you think is right regarding the doctors surgery but I believe they've been utterly negligent allowing you to run blood sugars so high without further intervention, and I'm not sure I'd trust them after that.  Hope you feel brighter tomorrow and the insulin makes you feel much brighter


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## Rosiecarmel (Jul 8, 2016)

I feel like a pin cushion! Over the past three days I've had blood taken from my left inner elbow, right inner elbow, left hand twice, right hand twice, left wrist and just below my right index knuckle! Oh and cannulas put in each inner elbow too. They've done another GAD test and apparently I'll get my results Monday? I thought it took weeks but nobody seems to really know. Tbh I'm not that eager to know the results. I'd rather get my sugars down first!


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## Stitch147 (Jul 8, 2016)

Finally you are getting the treatment you need Rosie.


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## Ljc (Jul 8, 2016)

Rosiecarmel said:


> I feel like a pin cushion! Over the past three days I've had blood taken from my left inner elbow, right inner elbow, left hand twice, right hand twice, left wrist and just below my right index knuckle! Oh and cannulas put in each inner elbow too. They've done another GAD test and apparently I'll get my results Monday? I thought it took weeks but nobody seems to really know. Tbh I'm not that eager to know the results. I'd rather get my sugars down first!



Hi. They do love taking blood don't they.


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## trophywench (Jul 9, 2016)

I think the GAD is fairly quick, it's C-peptide that only certain places do, so can take weeks (I rather think the actual tests take more time anyway)

One thing I forgot, Rosie when you were asking about driving - starting on insulin can actually send your eyesight bananas for a few weeks - so don't be too concerned should that happen - I could 'see' OK but not close up or middle close distance - telly screen length.  Bloody annoying - I missed virtually all the Munich Olympics - except the bad news.  Nobody could avoid that.


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## bilbie (Jul 9, 2016)

That is good news, you are going to feel so much better soon.


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## AJLang (Jul 9, 2016)

I'm so glad that they've listened to you and have started you on insulin xx


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## Carolg (Jul 9, 2016)

Hope you feel better soon rosie


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## SB2015 (Jul 9, 2016)

Good to read that you are now in safe hands with proper care and medication for your condition.  It will be well worth changin to a different GP once you have meds sorted, but stay with the hospital team to get levels adjusted.  It can be a bit of a rocky road at the start of treatment, but nothing compared to what you have been managing in the hands of your old Practice.


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## Ljc (Jul 9, 2016)

I hope your feeling much better today.


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## Rosiecarmel (Jul 9, 2016)

This morning I woke to levels of 18.3, consultant came to watch me to my first injection, had my morning meds and was monitored til lunch time where my pre lunch reading was 13.4! My lowest reading in a long time!! So I've been discharged with 1 pen, a week of meds and an appointment to see the hospital diabetic team Monday.

I'm going to be monitored very carefully the consultant said, because I am on 320mg gliclazide AND my basal insulin so I've been given a BG diary to monitor my levels. I've also got an out of hours number in case I need emergency support. On Monday, titration off my oral meds starts along with increasing my Humulin I. 

I feel very good today. I have a splitting headache but I feel good. Partly because of the low BG reading and partly because I'm now very positive for my future care! I shall be changing GPs once everything on my repeat gets sorted etc


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## Mark Parrott (Jul 9, 2016)

Fantastic results Rosie.


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## Ljc (Jul 9, 2016)

This is sounding good Rosie 
I'm glad your feeling better apart from the splitting head.


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## Northerner (Jul 9, 2016)

Ah, this is so good to hear Rosie!  At last!  When things have calmed down, and you feel ready, you really must make a formal complaint about your (lack of) treatment since your diagnosis. Assumptions were made and no attempt to deviate from a rigid course of action or timetable was made, despite your obvious continuing problems and distress - this must not be allowed to happen to others. This is definitely one of those things where I expect to hear a statement along the lines of an apology and 'lessons have been learned so this can't happen again'  

Take care, get some rest and rebuild your strength and confidence - you have been an absolute trooper throughout this adversity


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## zx10pilot (Jul 9, 2016)

Really glad to hear your good news Rosie


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## grovesy (Jul 9, 2016)

Glad you are on the road to get control of your Blood Sugars!


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## Rosiecarmel (Jul 9, 2016)

Northerner said:


> Ah, this is so good to hear Rosie!  At last!  When things have calmed down, and you feel ready, you really must make a formal complaint about your (lack of) treatment since your diagnosis. Assumptions were made and no attempt to deviate from a rigid course of action or timetable was made, despite your obvious continuing problems and distress - this must not be allowed to happen to others. This is definitely one of those things where I expect to hear a statement along the lines of an apology and 'lessons have been learned so this can't happen again'
> 
> Take care, get some rest and rebuild your strength and confidence - you have been an absolute trooper throughout this adversity



Oh I will definitely be putting a complaint in once my sugars are better and I'm feeling better. I cannot believe the treatment I've had. Every health professional saying "why aren't you on insulin?" but then refusing to PUT me on insulin?! Then having to jump through a million hoops until I just couldn't take it anymore. In some ways I feel quite lucky that I've had a reaction to Victoza as it forced me to go to the hospital and get help instead of accepting all this bullsh**t (scuse my language!) 

The diabetic nurse at the hospital was fantastic and she said that I am NOT going back to the community diabetic team. I will be with the hospital until I'm on basal/bolus insulin and I can manage it myself then I'll be discharged to my GP. By then I shall have a different GP, hopefully one who will be supportive! It's a shame that I'm going to have to leave when one of the GPs there was fantastic for my mental health but that's what community mental health teams are for.


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## SB2015 (Jul 9, 2016)

Nice to here a chirpy Stacey who is now in good hands.

If this is a new diagnosis of T1 could you also ask for a place on a DAFNE course.  Although you have already picked up so much from folks on here it gives an all round good education about the condition, carb counting and adjusting insulin for carbs and corrections.


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## Lindarose (Jul 9, 2016)

It must be such a huge relief to have at last been heard. You've had such a bad time and hopefully everything will become more settled now Rosie. 
Well done in dealing with it so well


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## Amigo (Jul 9, 2016)

It shouldn't have to be like this and whilst I'm absolutely delighted that you're now on the right track Rosie, I hope you will find the strength to complain about your treatment from certain GP's because lessons need to be learned at that surgery. 

Be good to hear a single figure wake up number one of these mornings!  (just try to avoid whole numbers...)


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## pav (Jul 9, 2016)

Rosiecarmel said:


> Oh I will definitely be putting a complaint in once my sugars are better and I'm feeling better. I cannot believe the treatment I've had. Every health professional saying "why aren't you on insulin?" but then refusing to PUT me on insulin?! Then having to jump through a million hoops until I just couldn't take it anymore. In some ways I feel quite lucky that I've had a reaction to Victoza as it forced me to go to the hospital and get help instead of accepting all this bullsh**t (scuse my language!)
> 
> The diabetic nurse at the hospital was fantastic and she said that I am NOT going back to the community diabetic team. I will be with the hospital until I'm on basal/bolus insulin and I can manage it myself then I'll be discharged to my GP. By then I shall have a different GP, hopefully one who will be supportive! It's a shame that I'm going to have to leave when one of the GPs there was fantastic for my mental health but that's what community mental health teams are for.



That's good for you putting in the complaint, some back sides need to have a boot up the back side, on a side note can you send your hospital team down to my hospital as could do with someone who knows what they are doing here, as all I get is the palm one off approach.


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## AndBreathe (Jul 9, 2016)

Rosiecarmel said:


> Oh I will definitely be putting a complaint in once my sugars are better and I'm feeling better. I cannot believe the treatment I've had. Every health professional saying "why aren't you on insulin?" but then refusing to PUT me on insulin?! Then having to jump through a million hoops until I just couldn't take it anymore. In some ways I feel quite lucky that I've had a reaction to Victoza as it forced me to go to the hospital and get help instead of accepting all this bullsh**t (scuse my language!)
> 
> The diabetic nurse at the hospital was fantastic and she said that I am NOT going back to the community diabetic team. I will be with the hospital until I'm on basal/bolus insulin and I can manage it myself then I'll be discharged to my GP. By then I shall have a different GP, hopefully one who will be supportive! It's a shame that I'm going to have to leave when one of the GPs there was fantastic for my mental health but that's what community mental health teams are for.



Rosie, I am assuming you have online access to your medical records at your GP surgery?  Assuming you do, I suggest you do a few things *as soon as you feel well enough*.

I suggest you go (on your PC/laptop, for ease) into your records and take screen shots of every entry since you presented with diabetic symptoms, or were diagnosed, whichever is the sooner. This is very important.

Secondly, you need to create a file with a summary of the same timeline. I would use Excel (or whatever spreadsheet programme you use), I'd use columns like, date, reason (diabetes, generally unwell, routine screening, non-diabetes review, or whatever), With whom, consultation details (a bit more context than “reason”), resulting actions (increased medication, ordered blood tests), Comments, Patient satisfaction levels (1-10 or something).

You can then use the spreadsheet to collate your progress, frequency of return visits, repeated visits for your diabetes, how many times you were “bounced” and so on. This will really help put your complaint together and be accurate and cohesive. Of course, your satisfaction levels are subjectively your own, but the timeline and inaction cannot be disputed, when you have your screen shots to back it up.

I know you shouldn't really have to take the screen shots, but, to me in any case, they would be. One SystemsOnline (used by my surgery) t is possible to retrospectively “amend” medical records, without any evidence of that being visible to the patient. I know this to be factually true as when I gained access to my records, I noted a materially incorrect entry which I asked to be changed. When this was done, naturally I checked, and was surprised to note showed no notion of audit, although it may of course, show on the more comprehensive view routinely used by the surgery staff. I have no idea on the latter part.

The only action you really need to get on to sooner, rather than later if the screen shots. You could always collate the Excel timeline from those, probably, but I would want the back up data, just in case. It would also enable you to work offline at any stage, should it be necessary.

You've had such a rough ride Rosie, but please look on this as an investment. As you've already recognised yourself, your complaint needs to be done, but at a time when you are feeling better in yourself, as it'll probably be an emotional rollercoaster when you come to document it all.


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## trophywench (Jul 9, 2016)

I don't think you can assume Rosie has Online access - unless you know her surgery has gone down that route?  Cos not many of them have.


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## Northerner (Jul 10, 2016)

trophywench said:


> I don't think you can assume Rosie has Online access - unless you know her surgery has gone down that route?  Cos not many of them have.


I have online access, but the information is restricted to vaccinations, allergies and medication - no notes. I would simply ask for a printed copy, which I believe they have to give you, although there may be a small charge. I doubt they would have time to do any extensive 'doctoring' (see what I did there?) of the notes, if they were so inclined, given that the whole business appears to have been a catalogue of progressive disasters and ineptitude.


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## AndBreathe (Jul 10, 2016)

trophywench said:


> I don't think you can assume Rosie has Online access - unless you know her surgery has gone down that route?  Cos not many of them have.





Northerner said:


> I have online access, but the information is restricted to vaccinations, allergies and medication - no notes. I would simply ask for a printed copy, which I believe they have to give you, although there may be a small charge. I doubt they would have time to do any extensive 'doctoring' (see what I did there?) of the notes, if they were so inclined, given that the whole business appears to have been a catalogue of progressive disasters and ineptitude.



It is my understanding that all surgeries had to have this enabled by April, this year.  https://www.england.nhs.uk/ourwork/pe/patient-online/

My surgery promoted the access to online booking and ordering of repeat prescriptions, but maintained complete radio silence about access to records; I had to ask for it.  This was an extended access from the appointments/repeats access, meaning I had to ask for it, in writing.  Within a couple of days I had been granted access.

I can understand that that sort of access might not necessarily be helpful to some clients (perhaps those with certain types of anxieties), but for those of us who have relatively regular blood tests it significantly reduces the past hassle of ringing the surgery every day, then grovelling for a print out.  I can now just go online and see my results.

Patient access records are the summary, coded records, as opposed to all notes and free text the consulting professional might add, but it is invaluable in a number of ways.  As I alluded above, when I reviewed my own record there was a material error in the coded result of a recent surgery and pathology results which I naturally ask to be changed.  Without online access I would never have known.

Perhaps your surgeries have adopted the same radio silence approach of my own.  Maybe a call could clarify?  If they don't, I might be inclined to ask why, and if you feel inclined.

The following is copied from the comments on the web page quoted above:


I hope that helps anyone who is interested.


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## Stitch147 (Jul 10, 2016)

Glad to hear you finally got the insulin and treatment you need Rosie.


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## grovesy (Jul 10, 2016)

They might have to have done by April but they have not, my surgery have no access yet. It is supposed to be coming has not yet!


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## Northerner (Jul 10, 2016)

AndBreathe said:


> It is my understanding that all surgeries had to have this enabled by April, this year.  https://www.england.nhs.uk/ourwork/pe/patient-online/
> 
> My surgery promoted the access to online booking and ordering of repeat prescriptions, but maintained complete radio silence about access to records; I had to ask for it.  This was an extended access from the appointments/repeats access, meaning I had to ask for it, in writing.  Within a couple of days I had been granted access.
> 
> ...


Nope, I have the special access, but it says "Browse your medical record held by your practice. Please note, there may be restrictions on the information you can view." - so nothing other than immunisations, medications and allergies, no blood test results or anything like that.


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## Amigo (Jul 10, 2016)

I absolutely applaud your efforts in gathering your medical information and advocating for yourself And breathe but I felt exhausted just reading what needed to be done with spreadsheets and analysis of the chronology of events  etc.  I suspect I'd only go to those lengths if I was contemplating legal action (unless you hire your services out! 

However, Rosie does need to complain strongly and move on to a different surgery. I suspect she's so busy as a student nurse that a full blown investigation may be too onerous however tempting. And truth is, whilst doctors may get a slap on the wrist, they're never going to be sacked over this. My experience is they close ranks and so few will criticise each other openly. I hope that privately they'll learn from this poor practice however.

Hope you're feeling much better now Rosie x


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## Rosiecarmel (Jul 10, 2016)

I unfortunately don't have access to my medical records. My GP surgery has the Systemonline thing however when I asked for the log in (as they have to provide the info for you to register) they told me it wasn't up and running yet. That was a couple months ago, I'm not sure about now. I will definitely be putting a complaint in however, once I am feeling better.


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## Ljc (Jul 10, 2016)

Rosie I do hope you start to feel better soon, but at least now your under the right team , who to me seem very caring.


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## grovesy (Jul 10, 2016)

My surgery's website say it is coming late June or Early July but we are nearly mid July and no date on website. I even asked when I was in for my review on Tuesday and was told not yet!
My surgery is undergoing a period of change and even the staff are not sure what is happening!


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## Northerner (Jul 10, 2016)

Rosiecarmel said:


> I unfortunately don't have access to my medical records. My GP surgery has the Systemonline thing however when I asked for the log in (as they have to provide the info for you to register) they told me it wasn't up and running yet. That was a couple months ago, I'm not sure about now. I will definitely be putting a complaint in however, once I am feeling better.


I would just ask for a printout Rosie  My surgery has had the online thing for over a year now and still haven't put all the details on it. I'm guessing that there are enough other pressures on GPs to make it not a priority. A printout should just be a keypress for them though


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## AndBreathe (Jul 10, 2016)

Amigo said:


> I absolutely applaud your efforts in gathering your medical information and advocating for yourself And breathe but I felt exhausted just reading what needed to be done with spreadsheets and analysis of the chronology of events  etc.  I suspect I'd only go to those lengths if I was contemplating legal action (unless you hire your services out!
> 
> However, Rosie does need to complain strongly and move on to a different surgery. I suspect she's so busy as a student nurse that a full blown investigation may be too onerous however tempting. And truth is, whilst doctors may get a slap on the wrist, they're never going to be sacked over this. My experience is they close ranks and so few will criticise each other openly. I hope that privately they'll learn from this poor practice however.
> 
> Hope you're feeling much better now Rosie x



Thankfully, Amigo, I haven't had to do this for myself, although I did have a real tussle on my hands to have my medical records amended to show the correct diagnosis, with the Practise Manager unsure why it mattered.  you can trust me, the error was one that mattered in so many ways!  I am one tenacious old girl.  

As I say, I haven't had to do this for myself, but it is what I have done with and for a number of clients, in order to shape an accurate, clear and successful complaint.  Sometimes these things have to presented in an eye-wateringly stark way.  I don't actually think Rosie's bunch will consider themselves to be anything other than compliant with the most basic interpretation of the NICE guidelines, in terms of pharmaceutical and treatment progressions.  Sadly, I also see their non-compliance with the 2014/15 regulation (never mind the 2015/16 regs) as an indication of how poorly they are operating.

Whilst i am sure they are under significant pressure, providing services for their patients, and in a patient care versus IT configuration as a priority we would all hope they would choose patient care.  Unfortunately, to an outsider, it looks like they are failing in the most basic tenet of the Hippocratic Oath; "to abstain from doing harm".

@Rosiecarmel - take your time doing your complaint, but do try to spend some time making notes very soon, as unfortunately, in situations such as you have endured, the memory can sometimes let us down.  They psych can start blocking out traumatic scenario, as I'm sure you know.

If I can help you at all with your complaint - proof  reading it or whatever, do let me know.


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## Amigo (Jul 10, 2016)

Oh I like tenacious AndBreathe, we are obviously cut from the same mould!


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## AndBreathe (Jul 10, 2016)

Actually, @Rosiecarmel , thinking about it, I would ask at the hospital if they have online access to your GP patient record.  I don't know whether this is in place yet, but I do know it's been in train for some time, so that particularly A&E would have access to full patient information, with a view to the better care of those arriving in hospital without warning - like accidents or other emergency presentations.

It would be incredibly fortunate if they did, but I have my doubts.  If they did, I'd ask for a basic list of all my past appointments; ideally since your diagnosis.

My record shows this:



There is further information to the right, detailing where the appointment was, whom I saw and the class of appointment (telephone or ordinary).  As you can see this is just 7 months.  I don't know what the limitations are on that particular screen, but the expanded view is the one with the coded data.  I doubt a hospital nurse would have the time to interrogate that for you!

It'll be a bit of a jigsaw.


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## trophywench (Jul 10, 2016)

Incidentally 'Vision Online' has now changed its name to 'Patient Services' and you may need to change User name and Password to access it - batty - my User name was too short (5 letters) and my password ditto, plus you have to have a mix of Capitals and lower case, plus at least one 'character', plus at least one number!

Bloody hell, but I suppose it's in preparation for medical records being accessible, but how the hell you are supposed to remember the flipping things - God only knows!  Now then - was mine a / or a @ ??????


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## Northerner (Jul 10, 2016)

trophywench said:


> Now then - was mine a / or a @ ??????


It was a '/' Jenny


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## Diabeticliberty (Jul 10, 2016)

trophywench said:


> Incidentally 'Vision Online' has now changed its name to 'Patient Services' and you may need to change User name and Password to access it - batty - my User name was too short (5 letters) and my password ditto, plus you have to have a mix of Capitals and lower case, plus at least one 'character', plus at least one number!
> 
> Bloody hell, but I suppose it's in preparation for medical records being accessible, but how the hell you are supposed to remember the flipping things - God only knows!  Now then - was mine a / or a @ ??????




Is that Batty as in Norah?
*
*
*
*
*
,*
*
*
*
Running and ducking


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## trophywench (Jul 10, 2016)

No - I rarely wear 'hose' and anyway, when I did,  they were always sheer and totally UN wrinkled !  as they would be now should I suddenly decide I want to wear a skirt in winter - summer I do sometimes, but it's bare legs at this time of year if I do, so it's rarely warm enough to consider it unless it's an indoor thing.


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## Rosiecarmel (Jul 11, 2016)

Well, I've seen the endocrine consultant this morning. He's a lovely chap and understands my frustration. He's upped my Humulin to 14u on a morning and stopped my gliclazide on a night. He says soon I'll be on a split dose of my Humulin but for the next few days he wants to see my bedtime readings without the gliclazide before deciding how many units to take on a night. I understand his point of view that we have to lower my sugars slowly so I don't cause any permanent damage to my body but I'm just so impatient after being fobbed off for so long!

Apparently it'll be a couple months before I see him again but in the mean time, the diabetic nurse I saw on the ward will ring me every 2-3 days for the next few weeks and advise me re doses and check how I'm getting on.

I've also gotta put all my results on Diasend for them to look at and I'm confident they'll actually read them instead of the DSN at my GP who never once looked at my readings!!


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## Rosiecarmel (Jul 11, 2016)

He also told me that even if my GAD comes back negative in a few weeks, he's convinced that I'm LADA but will only change it on the system when I'm on basal/bolus so my GP will take me more seriously


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## Stitch147 (Jul 11, 2016)

Rosiecarmel said:


> Well, I've seen the endocrine consultant this morning. He's a lovely chap and understands my frustration. He's upped my Humulin to 14u on a morning and stopped my gliclazide on a night. He says soon I'll be on a split dose of my Humulin but for the next few days he wants to see my bedtime readings without the gliclazide before deciding how many units to take on a night. I understand his point of view that we have to lower my sugars slowly so I don't cause any permanent damage to my body but I'm just so impatient after being fobbed off for so long!
> 
> Apparently it'll be a couple months before I see him again but in the mean time, the diabetic nurse I saw on the ward will ring me every 2-3 days for the next few weeks and advise me re doses and check how I'm getting on.
> 
> I've also gotta put all my results on Diasend for them to look at and I'm confident they'll actually read them instead of the DSN at my GP who never once looked at my readings!!



Im so pleased to hear that you are finally getting the treatment that you needed Rosie. I hope its not long before you start seeing better numbers too. X


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## Robin (Jul 11, 2016)

Phew, Rosie, it must be a relief to have someone discuss things with you like you're the intelligent and sensible person you obviously are!


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## Rosiecarmel (Jul 11, 2016)

Robin said:


> Phew, Rosie, it must be a relief to have someone discuss things with you like you're the intelligent and sensible person you obviously are!



You have no idea how good it is to hear someone go "I understand how frustrated you are" and then actually DO SOMETHING about it!!


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## Ljc (Jul 11, 2016)

Great news Rosie.  You must feel so relieved that you are now being listened to now and being taken seriously by from what you say , some very caring people.


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## Northerner (Jul 11, 2016)

Rosiecarmel said:


> He also told me that even if my GAD comes back negative in a few weeks, he's convinced that I'm LADA but will only change it on the system when I'm on basal/bolus so my GP will take me more seriously


All sounding good Rosie, I'm so glad that you have kept us so well-informed about your struggles so we have been able to support you through this and know what has been happening with you  Now you are firmly under the care of those who know what they are talking about, try to relax a little and be patient - you will get there and when you do, you will feel soooooo much better!


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## grovesy (Jul 11, 2016)

Glad things are still going in the right direction for you! 
I think most of us who have been following your journey will agree that you were wrongly given the Type 2 label!


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## jocat (Jul 11, 2016)

Glad things are working out for u at last, take care
Jo x


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## KookyCat (Jul 11, 2016)

Good stuff, sounds like some sense at last, thank goodness.  Glad you are being heard, and they're actually doing something


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