Hello, My son has been a diabetic for over 30 years. We are having a lot of trouble controlling his blood sugar count.

[Wee Barney]

My son has been a diabetic for over 30 years. We are having a lot of trouble controlling his blood sugar count, we follow the doctor's instructions to the letter but his sugars are all over the place, sometimes when he takes his insulin his blood count goes up. What can we do to help.

 

[Thebearcametoo]

I’m sorry he’s struggling with his BG

What insulins is he on? Has he done a course that explains carb counting etc? Sometimes when someone was diagnosed decades ago they don’t get up to date training so it can be useful to do a refresher and take a DAFNE course or similar.

 

[rebrascora]

Hi and welcome from me too.

Knowing more about which insulins he uses and when he takes them and if he carb counts and adjusts his doses to match his meals..... and if he has a Libre sensor on his arm to monitor BG levels or if he is still relying on finger prick tests to manage his BG will all be helpful in enabling us to give more appropriate advice. If he does have Libre, then perhaps posting a photo/screenshot of a typical 24hr graph might help us understand the challenges he is facing.

The most important thing is getting his basal insulin dose right. If that isn't holding his levels reasonably steady in the absence of food, then nothing else will make sense. Contrary to popular belief, basal insulin doses change over time and seasons, so it may be that his basal insulin is the place to look first and perhaps do some basal testing. If you/he don't/doesn't understand how to do that, just ask and we can post a link. It involves skipping a meal here and there to see how stable his levels are in the absence of food and meal time insulin. Diabetes can be incredibly frustrating if your basal insulin dose(s) are not holding you steady and basically won't follow the rules or make sense, not that diabetes follows the rules all the time anyway, but once basal insulin is near enough right, it makes a lot more sense.

 

[Pumper_Sue]

My son has been a diabetic for over 30 years. We are having a lot of trouble controlling his blood sugar count, we follow the doctor's instructions to the letter but his sugars are all over the place, sometimes when he takes his insulin his blood count goes up. What can we do to help.

Hello and welcome to the forum.
Perhaps your son would like to join the forum and explain what insulin he is taking as this would help no end with replies 🙂

 

[Proud to be erratic]

Hello @Wee Barney,

@rebrascora is right, it's much easier to offer suggestions knowing a little more detail and as @Pumper_Sue says, even better if your son were able or willing to speak for himself on this forum.

My son has been a diabetic for over 30 years.

Looking at your age and your son's 30 years as T1, you must already have acquired a great deal of knowledge about managing diabetes on his behalf from him as a young child. Albeit from a time when the treatment for T1 has moved on a great deal today.

We are having a lot of trouble controlling his blood sugar count, we follow the doctor's instructions to the letter but his sugars are all over the place, sometimes when he takes his insulin his blood count goes up. What can we do to help.

When you say you follow the Doctor's instructions to the letter, is that his GP or a Consultant specialising in diabetes?

This is important to know, since most GPs usually don't really know much about the oddities of T1 and if you and your son are following a GP's instructions, which aren't working, then the GP should be requested to urgently refer your son to a Hospital based Specialist Clinic. Such Clinics have Diabetes Specialist Nurses (DSNs) who deal with insulin diabetics all the time, who understand many of the unusual characteristics of diabetes and have good techniques for analysing what is going on and finding solutions.

 

[Wee Barney]

I’m sorry he’s struggling with his BG

What insulins is he on? Has he done a course that explains carb counting etc? Sometimes when someone was diagnosed decades ago they don’t get up to date training so it can be useful to do a refresher and take a DAFNE course or similar.

Yes, he had done a course on carb counting, etc a number of years ago and repeated it again last year. He also attended a DAFNE course with his son who also is a Diabetic.
He is on Novarapid (20 years) and Tresiva insulin ( app one year).

 

[Wee Barney]

Hello @Wee Barney,

@rebrascora is right, it's much easier to offer suggestions knowing a little more detail and as @Pumper_Sue says, even better if your son were able or willing to speak for himself on this forum.

Looking at your age and your son's 30 years as T1, you must already have acquired a great deal of knowledge about managing diabetes on his behalf from him as a young child. Albeit from a time when the treatment for T1 has moved on a great deal today.

When you say you follow the Doctor's instructions to the letter, is that his GP or a Consultant specialising in diabetes?

This is important to know, since most GPs usually don't really know much about the oddities of T1 and if you and your son are following a GP's instructions, which aren't working, then the GP should be requested to urgently refer your son to a Hospital based Specialist Clinic. Such Clinics have Diabetes Specialist Nurses (DSNs) who deal with insulin diabetics all the time, who understand many of the unusual characteristics of diabetes and have good techniques for analysing what is going on and finding solutions.

He has followed both his GP and a Consultant specialising in diabetes he has also been in hospital
a number of times trying to sort this issue out, he had to be treated for high Keytones on three occasions. Donald is blind in his left eye and can see very little with his right eye, so he can't use his phone and or a computer.

 

[rebrascora]

Does he have Freestyle Libre sensors or some other system for monitoring his levels. If so, are you able to post a photo/screen shot of a couple of typical days graphs illustrating the problem?

How far in advance of eating does he inject his NovoRapid?
If his basal insulin is Tresiba then it is unlikely to be running out as that is a very long acting insulin, but it doesn't suit everyone for that reason, so perhaps that is the problem. Seeing his graphs might give us a clue.

Has he always had problems managing his levels or is it a recent problem?

 

[Thebearcametoo]

It sounds like he would benefit massively from having a pump

 

[Proud to be erratic]

Thanks @Wee Barney for the extra information. Donald must find his T1 alongside his very limited sight extremely challenging.

I understand @rebrascora's observation about Donald's change to Tresiba, in that it is a very different basal to whatever Donald was previously on. I've been on Tresiba for about 2 years and its longevity in profile is exceptional, with the daily dose lasting about 40 hours. So today's dose is simply topping up yesterday's dose. This means it needs a very different mindset from what Donald has perhaps been accustomed to for the 29 years or so until the change to Tresiba.

My firm understanding is that you cannot use the basal insulin Tresiba to help regulate and correct daily swings from lows to highs (or vice-versa); this is probably different from what Donald has been used to. Tresiba changes take 3 days to become effective and so It is important (and of course this applies to all basal insulins, but possibly even more so for Tresiba) to get the basal insulin sorted first. This can take a little while to achieve, but once optimised it is not frequently changed and Tresiba's strength or benefit is the certainty that one's basal is pretty much right. With one clear caveat: most people's background insulin needs are not absolutely constant through any 24 hour period. So I have optimised my Tresiba to give me steady, hypo free, nights at c. 6.0 mmol/L. This means that I use ONLY my NovoRapid bolus insulin for all other needs, particularly in daytime; ie food, corrections for unexpected highs, and adjusting for exercise and activity (as necessary).

Here is a link for the process of conducting basal testing. I think it might have been written before long lasting Tresiba was available, but the principles definitely apply:

http://diatribe.org/issues/26/thinking-like-a-pancreas

I do change my Tresiba doses periodically; certainly I need less Tresiba in summer rather than winter and generally (as I'm sure you already know) nothing to do with Diabetes is fixed permanently! I'm on the cusp of reducing my Tresiba by 1/2 a unit now - just waiting for a couple more nights to confirm it is a little bit too much right now.

Only with a good steady and optimised background basal insulin can bolus give best results. So before reviewing or adjusting long term bolus insulin ratios, etc, try to get the Tresiba right first. I wonder if Donald's GP, Consultant, or whoever instructed for the change to Tresiba, has made clear how important this is and provided guidance on how to arrive at an optimised basal insulin specifically with Tresiba. I raise this last observation simply because it is easy for Health Care Professionals to assume that after 30 years T1 the patient has already got a firm grasp on these things ... even though the evidence is that they might not have! Given Donald's eyesight difficulties it is bound to be harder for him to keep himself up to date with diabetes management "tips and tricks".

 

[everydayupsanddowns]

Sorry to heat odvthe additional challenges your son is facing in managing his diabetes @Wee Barney

It certainly can be a relentless and thankless task

Hope that he is able to use the principles of his DAFNE refresher alongside some of the ‘lived experience’ suggestions from members here to begin to reduce his glucose instability and variation.

Must be very worrying for you as parents