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Hello Here

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Brian Gold

Brian Gold

New Member
Relationship to Diabetes
Type 1
Am new to the site so saying "Hello here" as advised.

I'm a young 57 and been a type 1 for 37 years. First serious incident happened before Christmas when I had a hypo seizure which resulted in dislocating a shoulder. It's now in a brace after an operation which involved installing pins. Fun Christmas 😉.
Joined this forum to see what the gen is on technology for monitoring and 'better' ways of doing things. I finger-prick regularly and it's starting to **** me off so that along with considering alarms to prevent the pre-Christmas incident and the like has brought me here.

Happy new year 🙄
 
Part of the answer is probably a Libre Brian, if you can afford it and can't get your CCG to fund it.

However - do you know for what reason you didn't recognise and treat your hypo in time to prevent the seizure?
 
Hi "TrophyWench" ( 😱 ??)

Yes I know why it occurred. I think you've written on another thread somewhere that the best way to prevent hypos is to learn from mistakes and amend behaviour. Of course that's perfectly true but the first organ affected by low blood sugar is the head and brain, resulting in making objective (subjective) self-diagnoses and taking corrective action difficult if not impossible. It's a paradox I suspect and most times I manage to correct things before it gets too bad. Sometimes I have to be told by my wife or whomever I'm with.

On the night in question I played badminton seriously for the first time in 20+ years and before going to bed noticed my BM was 2.5 so I had a cup of tea and two slices of cheese on toast and then went to sleep. I failed to realise that my BM would continue to fall through the night still (even though it was several hours hours since the physical exercise) and I was eventually revived by paramedics and my wife at around 05:00 as I was unconscious and convulsing. I then spent several days in hospital, which is never fun.

Everyone on here understands that maintaining healthy BM levels is our continuous challenge while trying to live as normal a life as possible. My fingers are now prick-numb (like most of us I imagine) so I am just looking for a better and perhaps more accurate if not quicker way of doing it. I'm actually surprised that there isn't more competition in the marketplace for devices, particularly with smart phones being as mature as they are now (note I said the phones are mature - not the users!) 🙂

Have a good Sunday
BRIAN
 
I can honestly say it has been at least 10+ years since I had an 'incapable' hypo, I get symptoms in plenty of time to sort myself out and learned to adjust my insulin far far better than I ever dreamt was possible for the previous 30+ years - plus if I start to lose timely symptoms, I know how to get em back again by running slightly higher for 6-8 weeks until they re-establish themselves. Night-time lows always used to wake me up and presumably still would if I had one.

I have to ask you two questions - have you been on a carb counting and dose adjustment course - eg DAFNE or one of the local ones run in different areas? The carb counting is old news, but the dose adjustment might not be! Have you ever been encourages to undertake a 'basal test'? - see http://www.diabetes-support.org.uk/info/?page_id=120 for an explanation. After the latter we can fine tune our doses to get em more in tune with our bodies, and this is on ongoing process all our lives cos our needs differ with just time, let alone outside influences.
 
Oh PS LOL

Our surname is Chapman and we bought a Triumph Trophy whereupon my husband joined the Trophy forum, using Trophychap as his handle therefore I bagged Trophywench - though I've certainly never won one of the usual kind, just the pillion seat and foot pegs of his!
 
Wow thanks for the info... a lot to digest (no pun). I have not done carb counting nor DAFNE but the details are interesting. I have an appointment with a specialist coming up and will mention to them. Never done a Basal test either.
 
If there isn't a suitable local course you can go on - and I do recommend that if you can - it takes a week so it's a commitment (some are 1 day a week for 4 or 5 weeks, others a whole week all at once) but goodness me! - I learned such a lot, and you suddenly find you have all these Type 1 mates, all of you singing from the same hymnsheet and all of you having different 'normal' problems so you not only learn how to solve your own ones, but also theirs too (obviously if some of em are very personal they don't get publicised - everyone gets as much 'personal' time with the nurses/dieticians/consultants as they need as well) - there is also an 'online' version which we can give you a link to should you need it.

When are you seeing the diabetologist?
 
Thanks again TW for great info. I don't have a date for seeing someone yet. I saw the diabetic nurse at my local surgery last Thursday and she said she would request and urgent appointment. It's now a week later and I understand NHS pressures may be too much for prioritising out-patient care. trying to locate a DAFNE course now...
 
Hello Brian, and welcome 🙂

Sorry to hear about the hypo seizure - hope the shoulder is healing rapidly.

Since you ask about better ways of doing things, my thought is that I wouldn't treat a hypo with a cup of tea and cheese on toast - even if you have sugar in your tea, the heat of the tea and the fat in the cheese will slow down the effect of the carbs, and if your blood sugar is 2.5 you need carbs which will act really quickly to get it up again. I'd have some fruit juice or glucose gel - but glucose tablets or jelly babies would be just as good - then wait 15 minutes, then test and make sure my blood sugar's over 4 before eating the toast or whatever.

Having said that, I know what you mean about the brain not functioning properly when you are hypo, I've had at least one hypo when I thought "I feel a bit hypo but I'm really tired so I'll just have a rest now and then I'll test to see if I'm hypo afterwards", and I was lucky not to wake up in hospital on that occasion.

A Libre would help to keep an eye on your levels without doing too much more testing (though you do still have to test a bit as well), and there are some other new tech devices being developed, if you hunt around the forum a bit you should find some threads about them. But like you say, it is surprising there aren't more, and the full CGMs which have alarms if you hypo are ridiculously expensive.

This is an online carb counting programme if you can't find a local one: https://www.bertieonline.org.uk/
 
No - you ARE urgent, pal - so if you haven't heard anything by the end of this week - ring that nurse to ensure the referral has gone and if possible - get her to remind !
 
Update for the kind people who have responded and offered advice here... we saw a consultant on Tuesday evening (I was able to go private as NHS couldn't fit me in before March) and am encouraged and less stressed now. He was brilliant and has made several proposals, the first of which is to change my BASAL insulin to a more stable and consistent one. He's going to write to my GP with his summary and advice. DAFNE, Pumps, Monitors, etc all discussed and covered. Feel much more positive and more importantly, so does my wife!
Cheers for now
BRIAN
 
Brian Gold said:
Update for the kind people who have responded and offered advice here... we saw a consultant on Tuesday evening (I was able to go private as NHS couldn't fit me in before March) and am encouraged and less stressed now. He was brilliant and has made several proposals, the first of which is to change my BASAL insulin to a more stable and consistent one. He's going to write to my GP with his summary and advice. DAFNE, Pumps, Monitors, etc all discussed and covered. Feel much more positive and more importantly, so does my wife!
Cheers for now
BRIAN
Click to expand...
You and your wife must be very relieved, glad you finally got the support and help but shocking how long the wait would have been with the NHS. I hope your shoulder is better now.
 
Shoulder still in brace/sling but hoping to get it taken away next week and then starts months of serious physio and pain no doubt but rather that than the alternative 🙂
 
Brian Gold said:
Shoulder still in brace/sling but hoping to get it taken away next week and then starts months of serious physio and pain no doubt but rather that than the alternative 🙂
Click to expand...
It's a bit of a journey then to recovery, but as you say better than the alternative. I hope with the physio and exercises you get full moment back, are you planning to get back to badminton?
 
Glad you are further forward Brian - my mind is currently wondering what on earth 'unstable' basal insulin you were on before? It's not a word I've ever heard used about insulin before.

None of the past offerings of course have released equally, they've all had peaks and troughs. But there again - the normal human body (nor indeed the body with diabetes) doesn't use the same amount of insulin every hour of the day so it's in the lap of the Gods whether we happen to get an insulin that more or less matches what our body needs! You do have to kiss a lot of frogs sometimes.
 
Unstable probably wrong, should have said inconsistent and more typical of a peak and fade effect. It is Insulatard and the consultant has said there are newer ones now which can maintain a flat line basal level throughout 24 hours. Sound better than worrying about peaks and troughs of basal as well as rapid insulin.
 
Yes - but a flat insulin profile won't match a real human body's needs anyway!

I have at least 8 different hourly base rates programed into my pump at the moment and that's the norm. There is one time of late evening where I leap from 0.25u per hour, to 0.57u per hour, then back again after 2 hours. Yes of course I've tried increasing one, reducing another, we all have to do that fairly often when we have a pump if we want to maintain good control.

I have to wonder out loud what sort of a 'specialist' was the person you saw, if he doesn't know that about Type I diabetic human bodies?
 
trophywench said:
Yes - but a flat insulin profile won't match a real human body's needs anyway!
Click to expand...
Yeah but...for those of us not on pumps, that's all we've got to work with, and it's much easier trying to tweak basal to fit in with our peaks and troughs if you at least know what it's supposed to be doing in the first place. Even Lantus, which is supposed to be flat, had too many peaks and troughs for me ever to find a 'best fit' with what my body was doing. I'm doing much better on Levemir twice a day, which at least does what it says on the tin - stays reasonably flat for twelve hours.
 
That's why Levemir worked better for me than Lantus, which builds to a sharp peak after 4-5 hours then carries on at medium pace but doesn't disappear for at least 36 hours - so you never know whether it's the last dose that's affecting you or an earlier one or what level either of em is proceeding at. Levemir proceeds exactly as the graph shows it's supposed to proceed at, dependent on dose per kg of body weight, and the increases and reductions are far more gradual - so 'kinder' to the body. Yes you do have to have 2 jabs a day of it, but for me and most people on it - it's well worth any minor inconvenience of on extra a day to escape the unpredictable surprises (and that stinging!) that Lantus causes so many people.

It's also worth bearing in mind that though all extraneous insulins (well, I dunno about animal insulins) can form 'pockets' which sit there and may release at any time for up to 12 years - FAR more people who have used Lantus have reported this than those who never have.

As I said - sometimes - in fact very often! - you need to kiss a lot of frogs before you eventually find your Prince!
 
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