Whereas some who don’t really manage their condition can achieve an ‘OK’ HbA1c there are those who count and weigh everything and struggle to achieve good figures. It couldn’t be done with a simple numerical line in the sand.
Not least because HbA1c is a flawed way of judging ‘good control’.
But, should the ‘expensive’ drugs be available to those who don’t really give a toss? <--- This isn't an opinion just a question!
But you could have, for example, your pump taken away. BUT this depends on having someone (the taker-away) who knows the user better than they know themselves – for example, my DSN has occasionally said to me ‘I can see this is happening – you need to do x.’ To which my response is ‘If I do x, they I will go hypo/hyper/be even more screwed up.’ Because I know how I react to small changes, and she only has second hand knowledge, and can only work on the ‘average’.
In summary, it wouldn’t work for diabetics on insulin. And I wouldnt suggest it for anyone else, of any clinical need.
I am shocked! There may be a whole 2 hospitals in Hungary whit proper diabetic training, but I have to say they are far from ideal. At age 10 they put the pressure on me to be the ‘all-time-perfect-controll’ diabetic, I could carb count from that time. The doctor-patient relationship is hierarchic, sometimes even humiliating, with zero empathy. My doctor (who didn’t like girls, thinking we all get lazy and and eat sweets all the time) put me on 30 units Lantus when I was about 14 years old, and 54 kg (I should have been on 0.8-0.9 unit/kg, including bolus.) It kind of decreased my dawn effect to 12ish, but from 10am to 3-4 pm I ;
The hierarchic attitude roots in education from the age of 3-4, and it affects relationships with any kind of health care staff. You don’t get paid much as a doctor in Hungary, and there is never enough money in the healthcare, which I suppose makes the health care team frustrated. Most people go to be doctors for the prestige. But I have to admit, My diabetologist was one rare unemphatic, with a wide reputation for it. But they were all well trained and more knowledgeable than the patients.
When I left Hungary, there was still a different attitude about rapid analoges, like they are rewards for those who carb count well, not like here, where they are almost the only ones in use. I suppose if they think the patient doesn’t carb count any more, than they put them back on the old insulin regime. I don’t know how could I work shifts on the old ones, I struggle to get my Lantus adjusted for busy shifts within 3 days, a human insulin only treatment could even make me unemployed, at least until I would find a job to suit my insulin. I remember, I had to beg for years for Novorapid, and when I got it at the age of 14, I just had my snacks officially skipped (had to keep eating midday to keep my glucose on 4 anyway, which I never told my very ‘kind’ diabetologist.) I was 19 and about to leave the country, when I had my first carb to insulin unit ratio until than, it was just my ‘snack-free Actrapid.’
Pumps are a half or non funded rare thing, and CGMs are a hospital thing to prove, that the patient can have good glucose for three days laying in a hospital bed, so it must be the patient overeating from 3am to 8-9am messing up the rest of the day (I had that particular humiliation in front of my entire medical team.)
I still have a sort of white coat fear, last time I was in the waiting room a nurse assumed I was a newbie, because I get so nervous like before an exam.
But there are some things I am not sure about in UK diabetic care, like do you take your readings to the appointment, or you just explain the main patterns? Last time I was at the western the diabetologist looked like I gave her too many numbers. I thought it’s better to check more before going, to have something to work with.
Hello… long time no log in, but here I am again with my views on this.. I had a pump clinic appointment recently, and found out my HbA1c has shot up (ok, followed a regular pattern) to 11ish (arrgh!!) Yes, I’m not feeling great, and I need to do more testing to have some info to work on rather than correct blind, but basically, I was gently “reminded” that the reason I was given the pump in the first place was because I fitted the criteria for having one, and was a deserving case.. However, with this latest continual rise in average bg’s, I would no longer fit the criteria for having a pump, and that unless I get my arse in gear and use it to my advantage, that they may have to consider whether I should still have it (OMG – please don’t take it away!!)
So yes, I need to sort myself out (in oh so many ways) and get back on track with single figure bg’s as a regular occurrence.. Although it wasn’t exactly a “threat” – I can see where they’re coming from, and it has given me a wake-up call to make a renewed effort to get back in control.. So I can sort of see where the Hungarians are coming from, in reality though, it’s not that simple to refuse all the fancy stuff/drugs and go back to basics, because in my case, that would completely work the other way, and I’d end up going out on a “high” with death by chocolate..!
When I last been to the diabetologist, she said I should try an extra 2 units of Lantus. To me it was evident to try it and it failed, and I wouldn’t waste the doctors time unless I have tried everything I can with the tools I have. I did Google what could be a solution, and than I’ve checked it in some reputable books. But the diabetologist didn’t seem to understand what I was talking about, so I showed her on my Kindle. It turned out she’s never even heard of it, that’s why she didn’t get what I was talking about.
Why did the diabetologist think I need her ‘permission’ for 1-2 extra units of Lantus? Should I make it clear next time, that I am sitting there if such things failed? Do I need to tell them, that I know how to do slight adjustments to doses, spot patterns, etc. She’s even asked if I carb count, I thought it’s evident.
Also, I am a little worried, cause she said she never tried this combinations of insulins for dawn effect (or for anything,) and it seems the rest of the team has not heard of it either. (It’s on Diabetes Support Forum UK, so it shouldn’t be such an alien.)
I am going to see my nurse next week, who gave great advice so far, but I don’t want to have a bad hypo instead of a dawn effect while I am asleep. I wonder if I should just ask at DSF who exactly had this treatment, and rather go by there advice?
I know I’ve gone off topic a little, but as this appointment is coming up I am getting more worried, just don’t want to be labeled as ‘pain in the **** patient’ and don’t get any more proper advice.