I don't have great control, what does the future hold? (T1)

[jeanpaul]

I've been a T1 diabetic for about 20 years. For the first fifteen of those my control was really poor, frequent low and high (20+) blood sugar, no monitoring, just taking insulin before meals and going on gut feel for what to inject. (There's a sad story behind this, but that's not what I'm looking to share in this question).

About five years ago I really turned it around. 4-8 tests each day, did a DAFNE course, pro-actively managing my diet, blood sugar and routines. Now my control is only "ok" though. 7.8 HBA1C, several hypos and blood sugars of 13-16 most days. But this is substantially better than I've ever managed before.

I'd really like to get a frank assessment of what my future looks like. How long I might have until complications form, and how long I might have left. I realise these things vary a lot between individuals, but there must be statistics that could give me guidelines.

It would help me make some major life decisions, and I would really like to know.

Does anyone here have any ideas?

 

[mo1905]

Re: I don't have great control, what does the future hold? (

I guess I'll tell you what you probably want ( and need ) to hear. First, you'll go blind, off with your toes then death ! This will happen Tues !
Seriously though, I think you already know the answer to your own question. It's never too late to start turning things around. The very fact you've posted here is a good sign. Do you/can you exercise ? This will certainly help with BG control and future complications. You could also take a closer look at your diet, you don't have to give everything up, maybe just cut things down a little. Diabetes can be a very nasty condition, a lot depends on how you deal with it, not the other way around. Good luck !


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[jeanpaul]

Re: I don't have great control, what does the future hold? (

I guess I'll tell you what you probably want ( and need ) to hear. First, you'll go blind, off with your toes then death ! This will happen Tues !

I like your sense of humour I do know this is pretty much how it goes. But I'd like to get a sense of when things might happen.

I'm 35 now (diabetic since 14). Would blindness to be likely to happen soon, in the next year or two, or in another fifteen? Could I have a stroke any day now, or in twenty years?

Knowing when things might happen would help me prepare for the future.

 

[mo1905]

Re: I don't have great control, what does the future hold? (

This would be impossible for anyone to answer. Do you have any complications now ? If not, and you take hold of your diabetes, you will lead a pretty normal life. I still get the sense that you want to be "scared" into making a few lifestyle changes for yourself but I'd only be making times frames up if I tried. Basically, if you keep going with poor control, it will eventually get you. Can't say when. You can chNge this though. Good luck !


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[jeanpaul]

Re: I don't have great control, what does the future hold? (

This would be impossible for anyone to answer.

For a precise answer, yes, but there must be general patterns here. I'd like to know what those patterns are.

To put it in perspective, if someone wanted to know when they might die then no-one could give them a precise answer. But we do know that UK life expectancy is 80.75 years (thanks google), and there must be other statistics out there about how smoking, healthy eating etc. affect that. So they could get a rough idea, and a rough is what I'm looking for here.

Do we know when blindness, strokes etc. usually happen - 10, 30, 50 years after diagnosis? Or even where these kind of statistics would be published?

 

[mo1905]

Re: I don't have great control, what does the future hold? (

Well, I've never seen them. Too many variables. Let me know if you do find them. Mind you, not sure I'd want to know. I may get run over by a bus next week. Even if you could get the information for blindness, say for arguments sake the average is 35 yrs after diagnosis, this still doesn't really help as it could happen to you anywhere from 1yr to never happening !


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[iHs]

Re: I don't have great control, what does the future hold? (

Hi jeanpaul

Ive been type 1 for nearly 50 years and since using a bg meter years ago, most of my hba1c's have all been 7.0 - 7.2% on average. The only problem Ive encountered is a touch of background retinopathy which usually comes when my a1c is slightly above 7.2%. But once my a1c goes down to around 6.8 - 7.1%, it goes again. The background retinopathy only affected me after 45 years of being troublefree and with an average a1c and was when it reached 7.3%

Its difficult to make assumptions on any year that you might develop complications as you may not develop any, but for the sake of being ok, try to get your carb ratios a bit more accurate so that you are not going really high after a meal, needing to do a correction which may not be calculated correctly and then your bg drops too much. Bg testing and probably eating carb on a more of little and often should help to even you out. Try to get the swings between when you eat food and then 2.5hrs later to be a bit more even and then you should be able to get an a1c somewhere around 7.2% for your next blood test and then 6months later try to aim for 7%.

Hope this helps you a bit........... start testing your bg a bit more and then things will all get better once you get your carb calculations ok and correction factor....

 

[Elc1112]

Re: I don't have great control, what does the future hold? (

You know what, the complications may hit next week, next month, next year, ten years time. You've raised your chances by not having good control but it doesn't mean that you will definitely lose your sight etc. There are examples of people who have had good control but still fallen victim to retinopathy. Equally, there are some with very poor control who have lived complication-free for decades.

Complications are, sadly, a possibility for us all. All you, and any of us, can do is keep your levels as close to normal as possible, stay healthy, make sure go to check ups so that any potential problems are caught as early as possible.

There are no rules that say 'you have had poor control therefore you will get xyz complication in x years time'. Just make sure you maintain good control going forwards and go to your check ups

Em


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[Daibell]

Re: I don't have great control, what does the future hold? (

HI. Yes, look at your diet and see if you can reduce and smooth your carbs as one poster has suggested. If you can get the carbs lower and smoother then you may be able to reduce your insulin units and hence reduce swings. An Hba1C of 7.8% is too high. I assume you have got you basal balance right and then the bolus?

 

[jeanpaul]

Re: I don't have great control, what does the future hold? (

I don't mean to be ungrateful for your advice, but I'm looking for statistics and general patterns of how diabetes progresses rather than lifestyle suggestions.

 

[Andy12345]

Re: I don't have great control, what does the future hold? (

...ok amazing advice here, so if this isn't what your looking for ill have a go....DONT BE DAFT! if you found what your looking for it will be bs and if your deciding weather or not to have kids, buy a house or become a bank robber 6 months before you die so it don't matter if you get caught forget it! live for today, try to leave a positive mark on the world, and hope to hell when you go it will be painless and as far in the future as possible

Good Luck!

 

[SamJB]

Re: I don't have great control, what does the future hold? (

Here's a graph of a large scale study on HbA1c and complications:

It shows risk compared to someone with a normal HbA1c. I.e. a non-diabetic. With an HbA1c of 7.8% your risk of retinopathy is 3 times that of a non-diabetic, kidney disease 2 times, nerve problems 2 times and cardiovascular disease is around 4 times, as shown here: