Brittle Diabetes

Has anyone found a way of coping with brittle diabetes. I've had it for 54 years. I used to have lots of bad hypos, so I did the DAFNE course and then, a nearly five years ago, I got a Medtronic 512 pump and last week the new Medtronic Veo replacement through Dr Darko at Central Middlesex. The pump reduced my hypos very considerably, but even though I calculate my food and relate my bolus (quick acting) and basal (background) rates to food and exercise, I have no way of anticipating what my blood glucose is. Eating exactly the same every morning, the same bolus and exercise and given the same pre-breakfast BG, the BG at 11.00 can be 2.5 or 16mm/l. I have to test my blood 8 times a day to avoid extreme hypos and hypers. The results defy the rules of DAFNE, so, though I follow them carefully, I still have no way to anticipate my BG readings.
Last night, after a very light meal (two toasts and salad) at 8.00pm, I was 9.0mmol/l at 11.30pm which is usually OK for me through the night, but at 4.00am I was over 16mmol/l. I took 4.5U of bolus which only brought my BG down to 11.5mmol/l at 8.00am. I had no breakfast but had another bolus of 2.4 which brought the BG down to 7.0mmol/l by lunchtime. I changed the insulin two days ago and was fine on the first day. I'm not ill, I have no sign of infection. Other days can be the opposite. Nothing is ever regular.
I am in pretty good health, at just over 6ft and 176lbs, about 10lb heavier than 20 years ago. My eyes and feet are OK. I'm fairly active. There is no regular pattern to my BG readings. My HbA1c are always between 7 and 8.4 which isn't good but not too bad.
What distresses me is that I try really hard to control my diabetes, but I can't find any way to regulate the metabolism of my diabetes. I never cheat and have a secret biscuit on the side and forget to put in in, there's no point. Anyone else with the same sort of problem?

I'm having a hard time finding a clear definition of what "brittle diabetes" is. It's got too much mix in with general statements about poorly controlled type 1 diabetes. I've been diabetic for 21 years and I've never heard of it.

With this, what advice have your DAFNE team given you since you've had this type of diabetes for so long?

If you take the same thing every day, have you tried the ratio adjustments to prevent post meal hypos? With you now being on a pump, my understanding of your regime is restricted because I inject manually.

Do you still have your DAFNE guidebook to help you? Five years is a long time to be doing DAFNE...

Best of luck with figuring it all out.

unfortunately I think the only answer to brittle diabetes is an islet transplant. A little while ago we were fortunate enough to have Richard Lane the president of Diabetes UK attend a DAFNE User Action Group meeting and he is/was a 'brittle' diabetic who had an islet transplant. It is not a 'cure' as such as it doesn't last forever, but apparently it made a huge difference to him. Another thing that helps, but at the moment is still expensive, is continuous glucose monitoring. These devices give you a BG reading every 10 mins or so and apparently also help greatly in managing BG as you can keep track of the effects of everything you eat.
All I can say is keep trying to control your diabetes, its not easy. We all have days when our BG's don't make sense, but to be in that situation all the time must be very frustrating. Hopefully there are others on here who can offer more practical advice based on experience.

I was told I had "brittle" diabetes 54 years ago and also again a few months ago. For me it means having no idea or way of anticipating how I will react to insulin or food or exercise in terms of blood glucose levels. I try fairly desperately hard to control my Type 1 diabetes, but to control it my body must have a consistent response to insulin, carbo intake and exercise, which it doesn't. I think that is described as "brittle" diabetes. Some diabetic doctors say 7% of their patients are brittle and some say 10%. I have just been issued with a Medtronic Veo with continuous BG monitoring which I will start to use when I receive training next week.

As my BG results are so chaotic, diabetic doctors always look at any pattern that lasts for 2 days and seem to give advice on raising or lowering insulin dosage on the basis of those two days ignoring the highs and lows of all the other days at those times. It must be nearly impossible to avoid giving this advice because it works for people with regular diabetes. You are seriously lost without patterns. To repeat, I weigh most of my food and relate the insulin boluses and basal dosage to the food and the amount of anticipated exercise. If my diabetes was regular, I would be a DAFNE star patient, but it isn't and I'm not.

I can't go down the transplant route because I grow most of my veg and fruit and the transplant drugs increase your skin cancer likelihood by 26 times and I cant or wont work the ground in a hat, long sleeves and gloves. I am hoping that the continuous interstitial glucose monitoring (plus frequent blood glucose tests) will find some patterns reliable enough to make intelligent changes and better control, though I am not advised to be confident in this.

It is disheartening to have "brittle" diabetes and so little possible control. With the pump and blood glucose testing 8 times a day, I can limit the worst hypos and hypers, but it is always living on the edge. On the other hand, 54 years of it with only one episode of a hypo leading to emergency treatment at hospital, no serious eye or foot problems, no ketone bad results, can't be considered too bad for normal diabetic let alone a brittle one.
Regards

Dear adamrit
When I was on injections I to was suffering the same problems as you. No patterns with my blood sugars and having a lot of hypos. Then 3 years ago I was given a medtronic paradigm 522 insulin pump and it has made a vast improvement with my blood sugars. My last Hba1c was 6.8 the best i've ever been. I have had diabetes for 42 years and having the pump was the best decision I have ever made, I would recommend if given the chance of having a pump to take advantage and give it a try. Hope you have the same success as I did, all the best

Dear Broady
I've been on the pump (medtronic 512 and now the Veo) for nearly 5 years. It has reduced my bad hypos very considerably but my Hba1Cs are a little bit higher than before the pump and DAFNE (at between 7-. I test my blood about 8 times a day with an Ascensia Breeze II (very quick and handy) and I think that if I didn't test so much, the hypos would be much more severe, so the pump may not be the reason for fewer hypos, just the extra testing. On the other hand, I love the pump for one canula injection every 3-4 days instead of 4 injections a day and now not having to get out an insulin pen all the time.

I just don't understand why, following DAFNE carefully and having a pump and using it carefully, my diabetes doesn't follow the rules. My insulin sensitivity alters from hour to hour, sometimes 3 units of QA (via pump) brings my bloodsugar down by 2-3 mm m'l and sometimes 1 unit brings it down 5 mm m'l. This is a huge difference in sensitivity and for no reason I can see.

Is there any research into this sort of irregular diabetes? I will be trying continuous glucose monitoring from next week for a while to see if it reveals more accurately the relationship between insulin, food and exercise in me as you can record all three factors on the pump. There may be some pointers to better control.

Regards

Hi adamrit
I was put on a continuous glucose monitor last year, when I had the results the specialist nurse and myself went through them and altered my basal rates to suit. With a bit of tweaking and a lot of hard work it paid off and my bloods have been very good since the alterations. I hope everything works out for you and let me know how you get on

This might sound like a dumb question as you might test for it all the time, but I noted in your example day's readings (and I realise it's only an example), that you said you'd gone to bed fine - then at 4am it was at 16, and then it was difficult to get down after that. Is it possible that you've suffered from the dawn phenomenon, which I'm given to understand produces exactly those effects? Again I realise it was just an example and could have been a coincidence but from reading in forums elsewhere, if that's what's causing you trouble it tends to make problems for you throughout the day due to the effect of everything your body does to counter the hypo during the night and the other hormones it releases to wake you up. I don't get it because of the times I work and sleep so I'm lucky. Do you test between 2-3am to see if you're having hypos?

I test most nights at times between 3.00 and 6.00am and I have never noticed the "dawn effect", though told to expect and beware of it. I do tend normally to go up 1 or 2 points between 6.00 and 8.00am, but that night starvation where your bloodsugar registers very high after a sleeping hypo, doesn't seem to happen to me. I am looking forward to doing continuous bloodsugar monitoring with the Veo pump and sensor which will reveal the reality, because you have to be careful not to get fixed ideas about how your diabetes works. I blame everything on "brittle diabetes, though it may be that my estimation of carbohydrate may not be as accurate as I think and I my background insulin could be fine-tuned with better continuous glucose monitoring.
My view of my diabetes is that my insulin sensitivity just goes up and down by a factor of four or five without warning. Today I tested 8.0 mm m/l at 8.30am, had 45gms carbohydrate (porridge) for breakfast but didn't take a bolus of 4.2units until 9.00 (Very unusual; I almost always have it 10 minutes before eating). At 11.00 I was up to 16mm m/l in spite of an hour and a half of hard work in my allotment. After more work, a cup of coffee and half an apple, I was still 13mm m/l before late lunch at 13.30. Every episode of irregular sensitivity can be ascribed to one cause or another but there seems little consistency ever.
I will try Broady's advice above and fine-tune the basals with a diabetic nurse after a few weeks of continuous blood glucose monitoring. I'll report back on the results.
Adam