• Guest - w'd love to know what you think about the forum! Take the 2026 Survey »

Long term poor diabetic control

D

dtutt

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
Hi folks.
I don't know how rare I might be but I have had poor control for best part of 20 years. As you can imagine this has not been good for me. I wish I could say that I know exactly what the problem is or that I ignore it but nothing could be further from the truth. My HB's have been consistently around the 9 and 10 mark and show no sign of improving. My blood sugar tests show deviation in my results from 2 up to 27 and for no clear reason. If I was a binge eater I would understand it but I avoid food for best part of 10 hours a day between breakfast and an evening meal. I don't lunch at all any more as I just cannot cope with the uncontrolled highs that eating at this time of day causes.
I have now been diabetic type 1 for about 35 years and was one of the first people on Human Actrapid at Guys Hospital in London. At the time the diet advise was to eat a high fibre diet and I have been eating almost the same meals for that whole time. On my rare good days my sugars rarely go above 10 and will hover around the 6-7 mark all day. However, mostly my sugars either surge to the low 20's within 10 minutes of getting up and stay there all day no matter how much I inject or they drop to 2 and I have to keep up a continuous stream of sugar all day to compensate. This unpredictability means that working away from home can be tricky. You never know if you are going to need to inject or scoff! Fortunately I work from home and keep active so I can at least keep an eye on things. On high days I can walk 20 miles doing my call outs to customers carrying tools etc (I don't drive) and still return home with blood sugar levels in the high teens.
With 20 years of experience of this problem I can say there doesn't seem to be an answer. GP's, diabetic specialists and the whole of the NHS and the internet seem to have absolutely no answer. I have found a few quirks that occasionally help such as vitamin E that seem to work for a few days but seem then to have horrible side effects such as water retention and weight gain which is almost as bad. I have tried every Insulin on the market and have settled on my current option of Novorapid, Actrapid and Insulatard but have proven that no other combination is any better. When I know that highs can mean I can inject twice my dose and it just doesn't work proves there is something else going on!
With some Insulins having some nasty side effects too such as the nightmares with Humalog for example are really far to bad to make them a good solution and when they obviously don't work that well either means this is one I will never try again.
So has anyone else have the same problem? The last thing I want is a pump fitted but given that my problem is totally random I somehow feel that a pump is not going to help me anyway!

Dave
 
Hi Dave,

I've had my share of poor control over the years. I'm glad to report continuous improvement over the years to the point where my blood sugar is generally within limits, my HbA1c is around 6 and although my blood sugar is sometimes low it doesn't cause problems. It's not possible for me to suggest an improvement since I don't know how you're handling things. And I don't at this stage want to list all the things I do because it would take ages. Maybe the best thing is to pick what I think are the most important steps first. If you consider these things might improve. If not, I'll add suggestions and hopefully others will too. Solutions have to be available! So, my top of the list suggestions are:

1 Make sure you know the carb value of each meal. Inject a matching amount of insulin without fail. also, inrease your dose to cater for any excess blood sugar before the meal. You can get an individual glycaemic predictor to help in all this; the one I use is called Pathfinder and it works very well

2 Look at yourself carefully during the hour following the meal for signs of a hypo and deal with it if necessary. Make sure you do this because this is the danger period for a hypo.

3 Get into a routine with your meals and injections. I inject just before I eat, just after is safer in case you miss the meal for any reason. I space the meals by >= 4 hours: this means that my pre-meal bg test is done when my last bolus and food are no longer affecting my bg. So my calculation of required bolus from Pathfinder is more likely to be accurate.

There's much more that I could say but let's leave it at that for now. Please get back if you need any more.
 
Hi there

Since I eat more or less exactly the same as I have done for 35 years I don't think it makes a whole lot of difference. Especially since my breakfast has been identical for over 50 years I somehow think what I eat is rather spurious in the way my sugars go. Some days I could eat nothing and my sugars would still climb to the point where I would need more insulin. Other days I cannot eat enough to stop them dropping to the point where I cannot do much at all except eat. There is no real pattern to it, its not injection site related nor is it related to sleep patterns or exercise. Something in me stops insulin working or alternatively pushes up my blood sugars which stops me having good control. I am in a regular pattern as far as my methods are concerned but it makes absolutely no difference. After 20 years or so by now, as an engineer I have to analyse everything I do and reverse engineer everything that I see you can maybe understand that I have been around all the possible scenario's!

I can inject 3 hours before I eat some days with no change in my blood sugar. Other days I almost think I don't need to inject at all.

I have a little over a fifth of my thyroid removed when I was first diagnosed which although the function of what is left according to tests says it is working fine I wonder if this has some effect.
 
Hi. Are you sure you haven't had a Hypo when your Blood Sugars suddenly rise eventhough you haven't eaten. Do try and eat regularly this might help. I wish you well and hope you soon resolve your situation. The best thing I have recently. Done is going on a Pump after 52 years of being Type 1.
 
Dave,

OK I see you're able to work things out. I'm an engineer too. That makes things very strange because it suggests that maybe you're doing all the right things without any success. What do the medical professionals say about it all?
 
Hi Dave, looking at your profile and the different types of insulin you are using it doesn't surprise me you have major problems.

I used to swing from 0 - 30 within an hour when on synthetic insulin's and even pork insulin had the same affect. It worked out to be the additives in the insulin that were causing the problems. I only use bovine neutral now.

Pumping is fantastic and you do not notice a pump when wearing it. Once I started to pump I had t keep checking the pump was still there, so just shows how noticeable it is to the wearer. :)
 
dtutt said:
Hi there

Since I eat more or less exactly the same as I have done for 35 years I don't think it makes a whole lot of difference. Especially since my breakfast has been identical for over 50 years I somehow think what I eat is rather spurious in the way my sugars go. Some days I could eat nothing and my sugars would still climb to the point where I would need more insulin. Other days I cannot eat enough to stop them dropping to the point where I cannot do much at all except eat. There is no real pattern to it, its not injection site related nor is it related to sleep patterns or exercise. Something in me stops insulin working or alternatively pushes up my blood sugars which stops me having good control. I am in a regular pattern as far as my methods are concerned but it makes absolutely no difference. After 20 years or so by now, as an engineer I have to analyse everything I do and reverse engineer everything that I see you can maybe understand that I have been around all the possible scenario's!

I can inject 3 hours before I eat some days with no change in my blood sugar. Other days I almost think I don't need to inject at all.

I have a little over a fifth of my thyroid removed when I was first diagnosed which although the function of what is left according to tests says it is working fine I wonder if this has some effect.
Click to expand...

Have you ever used a cgm to track your bloods, more than finger prick testing really can?

You mention you don't eat after breakfast because of the unpredictability of your sugars. What do you actually have for breakfast, and is it the same thing every day?
 
I wonder - have you had a chance to use CGM for a while?
It might be irrelevant but one of the existing explanations for all-day highs was the following: too much basal at night --> an unnoticed night-time low --> a release of stress hormones, leading to high blood sugars for the next 10 hours or so. A possible explanation that I have in mind: the basal might be set too high, and its peak action is inconsistent for some reason, producing low blood sugar in some cases, or all-day highs in other cases (because of the unnoticed low). I don't know much about action of these particular insulins, though.
 
Dave,

You said
There is no real pattern to it, its not injection site related nor is it related to sleep patterns or exercise. Something in me stops insulin working or alternatively pushes up my blood sugars which stops me having good control. I am in a regular pattern as far as my methods are concerned but it makes absolutely no difference. After 20 years or so by now, as an engineer I have to analyse everything I do and reverse engineer everything that I see you can maybe understand that I have been around all the possible scenario's

Then clearly something else is needed. I would suggest it's no good doing the same things everyday, we need to change our approach to cater for changes that we see. As an engineer you'll know about the maxim "plan, do check
 
, review, replan, repeat. The planning and doing is straight forward - do a bg test, is it too high and needs corrective insulin? decide the carbs in your proposed meal, decide how much insulin is needed for both these, eat, inject. Checking is a simple look at yourself or another bg test; in your case a test is probably best as this would reveal whether your bg level is still too high. Watch out for hypos all the time. Review - is the test result too high or too low and if it is how much more insulin or carbs do you need. Replan and act based on this and then do what needs to be done. Continue the cycle and things should improve. Really this should sort things out although it might take a while. I firmly believe (from experience) that a T1 needs to adapt to changes continually throughout every day. Nothing goes according to plan all the time.

Let me repeat something I said in my earlier post. I use an individual glycaemic predictor called Pathinder. It makes all of what I've proposed very easy. You still have to do the blood tests but it tells you what to make of the results, rather than just giving a snapshot of where you are. It tells you what needs to be eaten or injected next, to get your bg to stabilise at 5mmol/l.

I'm starting to go on too much. Last few words ... I knocked together for myself ideas on how to follow a reliable routine to get through each day with OK blood sugars. It's a Word document that I think should help. Not sure if I'm able to upload it to this thread, maybe someone in admin might advise. If I can I'll convert it to pdf and ship it up.

I'm certain it's possible to sort this problem for you and I'll help where I can.
 
Back
Top