First hospital check-up in over ten years tomorrow Not looking forward to the response to my last double-figure HbA1c which led to my newfound testing and improved control regime. Average bs over last 3 months is officially 7.6 – which, for me anyway, is outstanding
I think his probable response will be “and how the flip have you got through 32 years of poor control with no obvious complications (yet)?”
I’m hoping for a referral to DAFNE and a shot with a CGM – but will most likely end up with appointments with dietician etc
So the big question is (hoping for advice from someone who’s had a hospital appointment in a year starting in 2):
What’s the crack with test results nowadays? What is the preferred format for presentation and do they download from my Nano or do I need to print three months of tests in a not so easy to read format?
@seasiderdave – results presentations depends on your hospital/nurse/doctor. Some like stuff on paper, some prefer computer files (such as excel spreadsheets), others download results from meters (although I’ve yet to hear of one over here that does that – anyone? It does seem to be more a US thing).
I’d say, present them in the way that you keep them. If they want you to change, they’ll ask you to. If you write them down, present the paper copy. If you keep them on excel/mac equivalent, take along a memory stick. If you dont record them, shame on you ( ), download the results and give them that. I’d also say that my own experience is that they only look at the last month, so there’s no point in going back further than that.
And good luck. Tell them what you want, and dont take no for an answer. If you want DAFNE, ask if they do DAFNE. (And I’ve yet to find a dietitan who’s given me any kind of valid advice at all. Sorry to all dietitians out there reading this. Come work in Warwickshire and prove me wrong. Please.)
Aside from my very early days on MDI and the pump I’ve never been asked for results of my BG tests, so I never bring them along. I’ve certainly never heard of anyone doing something as advanced as downloading the details from my meter!
We just have a nice chat about this and that and I mention any problems or issues I’ve been having in general terms but we don’t go into masses of detail. Essentially I say something like “I’ve been having lots of morning hypos” and they say “why not try reducing your early AM basals” and stuff like that.
I don’t think your average BS will match up with your A1C as they measure different things. My average BG on my meter is always out of goose because if I get a very high or low reading I’ll check it again, skewing the averages! Anyway, this page apparently converts average BS to A1C: http://www.diabetes.co.uk/hba1c-to-blood-sugar-level-converter.html. According to it your average BG of 7.6 equals an A1c of 6.7. Let us know what you do actually get!
My dietician is lovely, but not much use as I always eat pretty well anyway.
As Annette says, be assertive – if you think DAFNE would be good for you then ask for it!
I take my netbook along and connect to my account at Glucosurfer…doctors express admiration for some of the graphs, but you can’t ask them about fine tuning your carb:insulin ratios – I guess that would be the job of a DNS (a non-existent breed here in SA).
@seasiderdave: You mention CGM…what about asking for the pump (or haven’t you converted the wife to pumphood yet? )
I’m quite possessive when it comes to my data, I don’t like to share it so rarely take anything in. I simply take a list of any issues I want to discuss, anything I want and any relevant research. eg when I wanted a pump and CGM I looked up the NICE criteria and went in with the a list of how I met it.
I guess it depends on what you’re looking for from your consultant. I mostly use mine as a second opinion to check my thinking. If I wanted some help identifying issues, I’d take graphs in from my meter, or if I knew the issues but wanted help solving them eg I’m always low in a morning, I’d present them with the issue and ask for advice. Or if I wanted something eg DAFNE, I’d go in with data on why I was appropriate for it eg I know I’m not carb counting accurately, I’m hit and miss when adjusting dosages which causes lots of highs/lows.
@annette Too true!! I have never come across a dietician who is worth my time of day. I know what I’m eating & if I don’t, I read the handy label which is printed on just about everything.
Of course, this may be due to be told at age three, by a dietician, that I could have half of one Jaffa Cake for my afternoon snack. Both my brothers were necking them by the handful. That & the fact my current incumbent looks like a before picture from a liposuction ad. You really expect me to take ANYTHING you say about food seriously?
@Dave Good luck tomorrow! Don’t take any brow beating. It is your health not theirs. They are paid to help you not guilt trip you. Alison’s got a good grip on it. Find out what you think might help & ask for it. As Caesar probably said “Ne te illegitimi confundant”
After the initial sharp intakes of breath and pointless “what’s your dosage at lunchtime?” type questions we pushed on with what I wanted to get out of the meeting.
There was agreement on shock at lack of ‘complications’ and agreement I would donate about half of my blood for ;
Ah, glad it all went well Dave! Sounds like a good plan to monitor anything and everything – it’s a complete chore, but I find that without data it’s impossible to tell what the hell’s going on. When my control goes pear-shaped I spend a week logging everything and usually after looking at the data a wee lightbulb appears – “ahha, *that’s* why I#m having all those hypos!” and the problem is solved!
I wouldn’t discount the 3 day CGM – it’s better than nothing and you could use it perhaps to see what your BG does when you eat pizza or something. You might find – for example – that it takes forever for your insulin to kick in, so injecting 20 minutes before eating might work better for you. Who knows?
I’ve heard good things about Carbs & Cals – at £8.67 on Amazon.co.uk (http://goo.gl/Z1hhM) it seems rude not to buy it – but I don’t have a copy myself. I’ve also got a set of those carb scales (these ones in fact http://goo.gl/o5T9K) which give you super accurate guestimates of your carb input at dinner time.
And there’s nothing sad about being excited about good control! I like having good control so my diabetes remains relatively tamed meaning I don’t feel crap and I can get on with doing more interesting things (like drinking wine!)
Given my lack of experience at hospital clinics, my responses are obviously based on a very limited sample but as far as test results go, I took a selection of paper copies of my Excel-based graphs (I find lists of numbers meaningless unless you have hours to spend on them!) and then just pulled out the relevant ones if we got to an appropriate point in the discussion and there was a point to make that would be illustrated by a specific graph. Based on my graphs it took the registrar (not consultant) about five minutes to say “have you thought about an insulin pump?”
I didn’t go looking for a pump, but I did think there was a distinct possibility that my data would suggest that I was a suitable candidate for one. So while I agree with @alison that if you know what you want you should go prepared with the evidence and be prepared to argue your case, at the same time, if your evidence is robust enough, and your medic is good enough, then an alternative approach is to let them use their professional skill and judgement and see what their diagnosis is based on the evidence you have provided. If their answer is not what you expected, then challenge it, but it seems foolish to not let your doctor exercise his/her brain/skills/training in the first instance. Of course they don’t know you (or your life or your family or your job or your bizzarre hobbies or…) so you need to help them reach the right conclusion and manage their expectations, and if they are really too busy, too entrenched, too dogmatic to see that you have your own ideas about your own illness then you need to let them have both barrels (refer to @alison‘s many posts on getting what you want from your medics )
Anyway, this is all too late for your return to the clinic, but I am pleased it went well for you.
Regarding the actual outcomes of your visit I would make the following observations:
-Why on earth would they bother testing you for Addison’s if your A1C is in double digits? Frequent unexplained hypos may provoke questions of Addison’s but not consistent raised BGs!
-When I met the dietician at the clinic it turned out that she was trained in the 1970’s (when you and I were diagnosed) “when they did carb-counting properly before they pretended it didn’t matter in the eighties” and a quick chat was all it took for her to decide that I probably knew more than enough. She did show me a copy of that book and I have to say it looked appalling to me.
Fascinating how every hospital is different. I have a diabetes consultant and a pump consultant. The diabetes one does all the blood pressure, testing of feet, urine, blood etc and any issues I want to talk about. I can request dietician etc if i would like to see one. Pump I see more often, and as often as i want… I see pump with DSN in attendance and she takes note of everything said. And sees through any advice necessary to be seen through with me. Sets up any CGM etc and also writes down anything complicated for me. Sometimes the dietician is there too. Pump info AND blood testing machine info are downloaded and looked at and any adjustments suggested. They discus anything that has come up in the other Consultant’s room. And i can also bring up any health problems here – ie I had strange lumps in my hand, I asked are they anything to do with my diabetes, I was sent down for an x-ray immediately and the consultant saw me after and looked at the X-ray with me and said what he thought and it was sent to be looked at by the expert and the results sent to me. Ditto when I was worried about my memory – sent for a CT scan by normal consultant I said to pump consultant I wasn’t happy with that as too much radiation and he changed it to an MRI. Results sent to me. I simply cannot fault the care I receive.
Too right @lizz – it might make things easier if there was at least some consistency between clinics! Although I think I might get a bit cross if I had my DSN in when I see my consultant – because the last time I went, there was a new guy, who was being trained in pump stuff (he was a fully trained/experienced endo), and my DSN decided she would see me with him (as I’m a rarity at my clinic – a pump user who does her own thing rather than expecting the DSN to work it all out for me) – and it turned into a show and tell. Show him your pump, Annette. Tell him about how it works, Annette. Show him your results file, Annette. I didnt get chance to ask/discuss anything, because I was then hustled out of the door. She rather takes over at times – so I’d rather see the Dr on my own. She does all the stuff about discussing doses etc (although she freely admits I know more about how to work it than she does – doesnt fill me with amazing joy).
OK. Update time (I really should start a blog – but at least here I know voices are listening, even if they are mocking; yes, I’m looking at you Tim ).
Thanks for all the replies they’ve been really useful and reassuring.
The CGM campaign is ongoing but it’s a slow burner whilst I build a relationship with the DSN. My key question is: “So there are no MDIers with a CGM in this health authority?” If there’s even one, I’ll fight like a dog. If not then I shall try my hardest to become the first.
Carbs & Cals is working well for me and, after taking time to put faith in a huge plate of pie being much lower than I thought, it’s helping.
Went back to see the dietician this week. At this stage (and I know it’s only one meeting) I thought he was fantastic. He looked at my figures and suggested that although my HbAic was high that was because I was having too many hypos therefore needed to reduce the insulin to carb ratio to 1:15 from the 1:10 that everyone he seems to see picks as being ‘correct’. Yes I may run high (9 to 12) for a few weeks but if we can get the hypos sorted now bringing down the background level will be much easier. This logic would have baffled my GP nurse so much her head might have exploded.
Where he got my faith was when I asked questions, he answered them confidently and in a way that made me believe he understood what I meant – i.e. I get a pre-bed reading of 4.0 what’s my food action at that point, knowing that a glucose solution would spike me and maybe drop me lower before morning.
He also repeatedly said that one size cannot fit all and to find answers to all my questions eg. effect of alcohol, will take time but we’ll get there.
Back in three weeks after following the new ratio (and I’ve brushed up on my 15 times table) for another analysis.
I’m feeling the most positive about the D as I have done in 30 years at the moment; so all is good. At the same time I’m feeling a little guilty that others obviously aren’t getting the care they need and this has shown me that if we want something, we have to start demanding it and stop being the submissive patient and become the controller. Obviously only two appointments in, I’m starting to sound like a reformed smoker but I’ve got genuine belief (hope) that my team can help me take control again.
HbA1c results back. I’ll preface this by saying that my previous was 10.1 and the past five years have seen nothing under 8.6. Now I know the figure I’m about to give you would cause many in this group to cry and stay awake through the night staring at test results shouting “Why? What can I do to improve this? How can I get you below 6.5 if you won’t even give me a clue?”. However, for me, this is the first step in my journey towards diabetic godliness so am quite happy to take my time – it has taken 32 years to get this far so another few months won’t affect my toes survival chances too much.
There you go, that’s it. Nothing to get excited about but for me it’s huge to get under the mmol/l equivalent of 10. I know the next will be higher whilst I’m currently averaging double figures daily to try and flatten the roller-coaster. But for now I’ll bask in the glory before being brought strongly back to earth.
Well done @seasiderdave that’s a great step forward and not an easy thing to achieve. My best ever was 5.6!!!!! God knows how as I’d been dreading the appointment due to not ever recording or testing my blood. The consultant gave me the “talk” about good control needed before baby planning (I’d just got married) and I thought oh God here we go. When told the result I couldn’t believe it and have never ever achieved that result again.
As we all know diabetes is effected by everything, just look for patterns which may be good or bad.
@annette – I am the official site tortoise. @mustard – I feel I may be basking in the glory a little early, but I now appreciate that making a real effort with testing and carb counting does make a difference in the long run. @tim – Indeed. All improvement is a movement in the right way. Not sure about feeling any better but with the help of here and my team I certainly feel more confident of being in control. The previous daily test lottery is less of a surprise as I’m now starting to make decent estimates of where I’m at. Things like this morning’s 4.6 after a 12 at breakfast threw me slightly though. Such is the human body though.
The thing that’s struck me is that if you don’t ask the questions you don’t get told. I used to play around with my basal value quite a lot but it’s only since sitting down and thinking about it that, of course, that won’t help me judge the next day’s bolus (or quick-acting) if the background (as it used to be called) is at different levels each day.
It’s a bit weird, but me and the body are now at a friendly daily war to get tests in the golden zone for a decent amount of time. At the moment I’m starting to win again.
@seasiderdave – 7.9 is a fantastic achievement! Don’t underestimate it. Having had 22 years of HbA1c’s over 10 I got down to the 8 point somethings last year and it took an immense amount of hard work.
My latest HbA1c is 6.4! (blows own trumpet! ) Hang in there – a bit of hard work working things out now will be well worth it. I’m so pleased for you that you feel like you have a hold on your diabetes – I finally feel like that too. My BG’s still bump up and down but I can normally see the reasons for most of the bumps and I can deal with them and learn from them – there’s still a random 12 here and 2 there but I don’t feel guilty or frustrated like I used to because I can see the bigger picture now and I’m confident they are just caused by ‘life’!
You mentioned Carbs & Cals – I don’t have the book but if you have an iPhone I’d recommend the app – it’s only a few quid and much handier than the book when eating out!
@bellebe Thanks. I have both book and app. Now wish I’d held off on the book purchase as the app does everything I need. Always good to have a paper backup though for when the i dies.
You mention 12 and 2. The big thing for me is bringing the highs down from the high teens to below 13. My chart now resembles a kiddie-friendly rollercoaster instead of the Pepsi Max Big One it used to be.
Well done on your 6.4; I bow at your feet for your fantastic control