Hello everyone,
I am a Type 1 diabetic, diagnosed 22nd December last year. I was visiting my family at the time of diagnosis, and was suffering DKA at the time, so got treated at a hospital in Lincolnshire and was prescribed both long-acting insulin (Levemir) and short-acting insulin (Novorapid). When I returned home to London I began attending the diabetic clinic weekly at my doctor's surgery. My readings were unstable, fluctuating between v.high (19/20) and hypos, and my nurse told me that she believed this meant I was a Type 2, not a Type 1, so took me off the Novorapid. I was put on tablets (Metformin and Actos) with slow-acting insulin, and my readings rocketed immediately. I told her how many high readings I was getting (my meter usually said HI and when it did give a numerical reading it was usually in the 20s) but she said it would take a while for the tablets to kick in, so I remained on this regime for several months. With my readings always high I felt tired, lethargic and not myself so I asked to have fast-acting insulin again. Although I still got many high readings, there were some good readings at least (5-12 was what I considered good really, compared to the teens and twenties). I was still on the Metformin and Actos tablets too, although they seemed to have no positive effect at all on my readings (a couple of days I forgot to take them and my readings were no higher than if I had taken them..) After several months, my readings were still unstable and usually high and I was beginning to wonder if there was any possible way to get good readings, when she suggested Byetta. I'd never heard of it, but the way she sold it to me was this "It's a new treatment that has stabilised people's readings brilliantly, you won't have to inject at mealtimes, it decreases appetite and because it's not insulin, you'll lose weight" She did confess it was really for Type 2s but told me it had been used on Type 1s with amazing results, so I agreed to try it. I was a bit worried about not having insulin, so I said "Is there anything I should look out for that means I should stop taking it?" and she said "No, it will make you feel sick but you won't actually be ill, it'll pass after a while."
So I took my first Byetta injection on Thursday morning - as predicted, I felt very sick for several hours, and again after the evening injection. I tested my blood sugar levels several times - the first reading was 25, and after that it just said 'HI'. Friday morning I had another injection, and was still feeling sick 6 hours afterwards. I'd been laid in bed, feeling v.tired and nauseous and initially put it down to the Byetta, until I realised how thirsty I was, and how completely weak I felt. I was sure it was DKA, having had the same symptoms upon first being diagnosed, so I rushed myself to the hospital, feeling weaker and iller by the second. I told A&E that I thought I had DKA and they rushed me through, and as I sat on a bed I started being sick and falling asleep, so knew before they'd even tested me what was wrong.
I was admitted straightaway, as my ketone and glucose levels were extremely high, and all the doctors asked me why on earth I'd stopped taking insulin. When I explained they were horrified, and told me that there was no reason whatsoever for me being on Byetta as I was a very unsuitable candidate, being quite obviously (to them, at least!) a Type 1. I was in hospital for 5 days, most of that spent on a drip, including my 21st birthday...spent in hospital feeling terrible.
I'm understandably angry and upset that I had to go through all this, and that someone who I trusted with my health and who is meant to be an expert made such a stupid and inexplicable decision (my readings were still high on insulin so taking away insulin alltogether is surely not a good idea?!) DKA is something I was hoping never to go through again, and yet I had to because of this woman's experiment! Although it is lucky I recognised the symptoms, as if I hadn't I would have simply put it down to the Byetta and continued my day, possibly ending up in a very dangerous position. I was alone and if I had become comatose it would have been several hours before my boyfriend came home to find me, which is worrying. Not only that, but since coming off the tablets (which the hospital instructed me to do) my readings have been much more 'normal' - they haven't been above 13 and I feel so much different. Before I felt so, so tired and weak all the time and it angers me to think that I've spent the past 6 months feeling like that when a competent professional could have brought my readings down and made me feel as well as I do now.
So basically what I want to know is what should I do to complain about my treatment? I am going to write a letter to the surgery, but is that enough or are there higher authorities that I can tell about this? I and everyone I know really want something done about this, as I feel so angry that this could happen.
Thanks in advance for any advice you have,
Natalie
I am a Type 1 diabetic, diagnosed 22nd December last year. I was visiting my family at the time of diagnosis, and was suffering DKA at the time, so got treated at a hospital in Lincolnshire and was prescribed both long-acting insulin (Levemir) and short-acting insulin (Novorapid). When I returned home to London I began attending the diabetic clinic weekly at my doctor's surgery. My readings were unstable, fluctuating between v.high (19/20) and hypos, and my nurse told me that she believed this meant I was a Type 2, not a Type 1, so took me off the Novorapid. I was put on tablets (Metformin and Actos) with slow-acting insulin, and my readings rocketed immediately. I told her how many high readings I was getting (my meter usually said HI and when it did give a numerical reading it was usually in the 20s) but she said it would take a while for the tablets to kick in, so I remained on this regime for several months. With my readings always high I felt tired, lethargic and not myself so I asked to have fast-acting insulin again. Although I still got many high readings, there were some good readings at least (5-12 was what I considered good really, compared to the teens and twenties). I was still on the Metformin and Actos tablets too, although they seemed to have no positive effect at all on my readings (a couple of days I forgot to take them and my readings were no higher than if I had taken them..) After several months, my readings were still unstable and usually high and I was beginning to wonder if there was any possible way to get good readings, when she suggested Byetta. I'd never heard of it, but the way she sold it to me was this "It's a new treatment that has stabilised people's readings brilliantly, you won't have to inject at mealtimes, it decreases appetite and because it's not insulin, you'll lose weight" She did confess it was really for Type 2s but told me it had been used on Type 1s with amazing results, so I agreed to try it. I was a bit worried about not having insulin, so I said "Is there anything I should look out for that means I should stop taking it?" and she said "No, it will make you feel sick but you won't actually be ill, it'll pass after a while."
So I took my first Byetta injection on Thursday morning - as predicted, I felt very sick for several hours, and again after the evening injection. I tested my blood sugar levels several times - the first reading was 25, and after that it just said 'HI'. Friday morning I had another injection, and was still feeling sick 6 hours afterwards. I'd been laid in bed, feeling v.tired and nauseous and initially put it down to the Byetta, until I realised how thirsty I was, and how completely weak I felt. I was sure it was DKA, having had the same symptoms upon first being diagnosed, so I rushed myself to the hospital, feeling weaker and iller by the second. I told A&E that I thought I had DKA and they rushed me through, and as I sat on a bed I started being sick and falling asleep, so knew before they'd even tested me what was wrong.
I was admitted straightaway, as my ketone and glucose levels were extremely high, and all the doctors asked me why on earth I'd stopped taking insulin. When I explained they were horrified, and told me that there was no reason whatsoever for me being on Byetta as I was a very unsuitable candidate, being quite obviously (to them, at least!) a Type 1. I was in hospital for 5 days, most of that spent on a drip, including my 21st birthday...spent in hospital feeling terrible.
I'm understandably angry and upset that I had to go through all this, and that someone who I trusted with my health and who is meant to be an expert made such a stupid and inexplicable decision (my readings were still high on insulin so taking away insulin alltogether is surely not a good idea?!) DKA is something I was hoping never to go through again, and yet I had to because of this woman's experiment! Although it is lucky I recognised the symptoms, as if I hadn't I would have simply put it down to the Byetta and continued my day, possibly ending up in a very dangerous position. I was alone and if I had become comatose it would have been several hours before my boyfriend came home to find me, which is worrying. Not only that, but since coming off the tablets (which the hospital instructed me to do) my readings have been much more 'normal' - they haven't been above 13 and I feel so much different. Before I felt so, so tired and weak all the time and it angers me to think that I've spent the past 6 months feeling like that when a competent professional could have brought my readings down and made me feel as well as I do now.
So basically what I want to know is what should I do to complain about my treatment? I am going to write a letter to the surgery, but is that enough or are there higher authorities that I can tell about this? I and everyone I know really want something done about this, as I feel so angry that this could happen.
Thanks in advance for any advice you have,
Natalie
