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Feeling defeated!

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L

lucy123

Well-Known Member
Relationship to Diabetes
Type 2
Feeling so fed up and rubbish today! AAh!
I am on Byetta and got off to a flying start with it - excellent bs from day 1, much reduced hypos and no insulin floods at all for a good time!
Now it has all gone pear shaped!
I started on 2 x 5mcg and it was working fine. I then slowly tried to increase to 10mcg but just couldn't get there. The sickness was frightening! The consultant then said I should stay at 5's.
However the 5's are now doing nothing - and I keep trying to increase but keep getting the sickness. I had lost over 2stone in weight but it jsut seems to be creeping up again, the floods are back and hypos and I am ravenously hungry.

Does anyone have any idea what could be happening?

I have emailed the consultant today, and also asked him if it might be worth me trying Victoza instead. I have to self fund so the increased cost would be down to me - but we will wait and see what he says first.

I am so fed up -feel like kicking a wall! Grrrr. I just hate what my body is doing at the moment!:(
 
Can't offer any advice, but hope you get an answer soon and feel better.

Sorry if this is personal, but why do you have to self fund? I had assumed all type 2's on any kind of diabetes medication got free prescriptions.
 
I'd be kicking up a huge stink if I had to self fund a medication like that - why are they not covering it for you?

sorry not sure re; Byetta....I was on it a very short time and it made me horrendously sick too, horrible.
 
I'm also puzzled as to why you would have to self fund Victoza. If >5mcg Byetta doesn't suit you, due to nausea & vomiting, despite giving it a good try and it having good effects on your blood glucose levels, then NHS should be considering Vicotoza.
 
🙂Sorry everyone I should have explained for those of you that dont know my situation.

As my hba1c is below 7, I do not qualify under NICE guidelines for Byetta and due to the head diabetic specialisty NHS guy in my area he will not authorise it under NHS - and therefore my gp wont as she is worried she might fail her audit.

My private consultant is a specialist in this area and understands my body and what it is doing (I am a bit special!:D) and has treated patients with the same issue as mine successfully with Byetta. However he has to give me a private prescription for it - as if I went to the NHS guy he would refuse it and say I dont need it. If I lived 20 miles up the road though I would be allowed it by the NHS consultant there! So annoying!

I think (and so does my consultant) that the reason my hba1c is so good is the highs are offset by the hypos somewhat! A possible idea.

So I have to pay.

I hope this explains things a bit more.🙂
 
Soooooo - have to ask Lucy - whyever does your GP not refer you to the specialist up the road?

NHS Choices. I rest my case.
 
I appreciate what you are saying about having to pay - but I just have too.
I have battled for over a year to get Byetta and the only outcome is this one.

Is there anything anyone can say to make me feel any more positive about how I am feeling generally?
 
for what it is wrth we all have bad days where we feel like we are just treading water to keep afloat. Visiting these boards and knowing I am not alone helps.
 
Thanks Caroline.🙂
 
Hi

Sorry you are having such a rubbish day; after the byetta worked so well to start with.

A bit gobsmacked that you are having to self fund (Makes my having to fund my own testing strips not so bad). I understand there are criteria for you have byetta, but it may be if your weight is creeping up is it possible for you to look at your activity side of things as possible more exercise may improve your situation? Possible you may feel more in control.

My father in law didn't get on with byetta and then went straight onto insulin and his "spiking" improved no end.

I think it is short sighted of your medical team not to authorise you trying victosa as your average is under 7 as this looks likely to be because your levels being high/low all the time. If you have to self fund to start then it shows the victosa (sorry can't spell) would you be able to go to GP to get it on prescription further down the line?

Sending you lots of hugs & hope you feel a bit more positve very soon. One day at a time. Are you due to see your consultant soon to discuss how you feel at the moment?

I'd try to push for an appointment if you can to hopefully feel like you are moving forward instead of a little backwards step at the moment.

Take care
Lynne
 
Aw so sorry Lucy to hear that you are struggling. Can't advise you other than say I would hope your Consultant might have the solution or at least some ideas! Chin up. You have come a long way!🙂 Katiex
 
Can't offer any advice re byetta but just wanted to send you some (((hugs))) xxx
 
I'm sorry to hear that the dreadful insulin rushes are rearing their heads again.

I hope your consultant can come up with some useful treatment for you.

But, the 'war hasn't been lost and so you're not defeated yet' is my take on things.

Head up and chin out!!

Andy 🙂
 
Thanks guys - I have emailed the consultant (who is very good) and hopefully should hear back in a day or two.

Lynne - currently I do tennis 5 times a week, I run, do a spin class and a zumba class so its not lack of exercise, but a good point to make - thanks.

Now I have had possibly a little interesting thought over night. Yesterday I started my new pen, and the Byetta seemed to be kicking in again. The last pen is the pen I took to Turkey in 46 degree heat -even though I used the frio bag - I am thinking it is possible it could have gone off?? It seemed to look okay. Another thought is I did think every time I injected the 'Byetta smell' seemed much stronger - could the pen have been broken and me not realise?

Yesterday I was able to stick to my planned food okay and had the nausea again.

Its just a thought. I will take the old pen with me when I see the consultant.

So ..onwards we go - feeling a bit happier today.

Thank you for the support - it certainly has helped lift me a little.🙂
 
Good luck Lucy, wishing you success 🙂 It is possible the Byetta was affected by the heat, or possibly that it was damaged, so certainly something to consider. Hope things get back on track for you now 🙂
 
Thanks Alan.🙂
 
Hi Lucy I hope that the consultant can come up with a solution for you. Can you have medication for the nausea? The reason I ask is because I have tablets four times a day for my nausea although this is caused by another problem
 
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