Is brittle diabetes a myth?

According to some, it is. According to some of them, if you use pumps, CGMs, the right type of insulin, you can about do away with the brittleness.

Now I'll admit, I have dosed too much for food, and not had a chance to check , and it's messed me up.

But what some seem to be saying is like the eqivalent of if you live in a high crime area, but you wear body armour, carry weapons, and perhaps have Special Operations training, you won't become a crime statistic. Duh.

My body doesn't process artificial insulin as well as it did before I was diagnosed with T1D. Since I wasn't diagnosed until 27 years of age, I have a little experience with normalcy.

This brittle debate seems to play into the hands of those who want us to believe artificial insulin and all the technology your insurance will cover, is a cure. I'm happy so many are living better lives with CGMs and pumps, but they aren't cures.

I think the term is over-used, but I definitely think there is a spectrum, with some finding things much easier than others. All I can say is that eating virtually the same foods every day (including weighing and everything), testing 8-10x per day, using an insulin pump, and doing the same types of activities every day, I still have significant highs and lows every single day.

I was put on the pump with an A1C of 4.6, attributable to lows, when I read stories about the Dexcoms and other CGMs, it almost seems like they just give you an early warning more than helping stabilize blood glucose. I have a few highs, but mainly lows, living an active life and trying to follow DCCT guidelines.

I seem to either have too many highs or too many lows. And then there's days like today when I'm trying to find a balance and have both. I don't have a CGM yet, but I think it will help a lot when I get one. Not so much for warnings, but so I can see what my blood sugar is doing in between tests and overnight, and how certain foods affect it, etc.

I am one of those people who have been diagnosed with Brittle Type 1. Yes, I am a very unusual case. The diagnosed of Type2 by my original doctor because of my age and the absence of ketones was changed to LADA when I had my first appointment with an Endocrinologist. Within two years, I was classified as Brittle Type 1. I have been advised that a pump would not work for me because of my extreme and varied reactions to insulin.
All people with diabetes can relate to the saying WTF or call their meter” liar” at times, but is there such a thing of Brittle Diabetes? Like all people with diabetes, we are guided by our health professionals but we usually get things right and know what works best for us as individuals.
To achieve good control, I follow my own set of rules which work most of the time for me. These are the most important rules I have to follow if I am to achieve good BGL.
1. Always test before injecting or eating.
2. Make sure BGL are below 110 and falling before eating.
3. Of a morning make sure BGL have not risen 30 minutes after injecting NovoRapid.
4. When doing book work or having an inactive day have a very low GI breakfast.
5. On active days, a high GI breakfast is required but I have to start work straight after eating to prevent Hypers.
6. When at the Gym, tests have to be taken every 10 minutes if BGL start to fall.
7. When BGL reaches 80, all exercising has to be stopped. Eating high GI foods will not prevent BGL from falling more and will end up giving a massive Hyper one hour later.
8. When net fishing, do not use any insulin and inject Levemir when arriving home.
9. Change insulin dosages according to work load and type of work. (Insulin usage can change from 100 units on inactive days with good day time BGL and still having Hypers at night to under 24 units on active days with Hypos during the day and good control through the night.)
10. Test between 2am and 4am if BGL are not stable and change PM Levemir to correct overnight BGL.
11. Very important: BEE AWARE of HYPOS. DO NOT ignore the slightest symptoms. (Although my Hypo awareness is considered low at 50, it has not changed in the five years since I have had diabetes.)
12. Fluctuating BGL and levels in the Hyper zone for to long will causes sore feet. With tight control my feet are still healing after a few days. I still have good feeling even in my toes.
Do I believe there is such a thing as Brittle Diabetes? More to the point, I would say, I had chosen the wrong option when things go wrong. When my reading is 100 then three hours later it is over 400 even although I have made the correct calculations and injected the right amount of insulin, I can usually track down why this has occurred and change things the next time when a similar set of events occur. Knowing how and when to use the right option will give better BGL control and this can be only gained by experience.

My boss said two week ago Monday the "none of the diabetics I know has so many problems as you do, they are all stable.) I got up the nerve on Wednesday to ask him how many diabetics he actually knew - 4 - without knowledge if they are T1 or T2. I suggested that he was making an unfair generalisation and he said "well, it's a fact that the four I know have no problems - he's a bit stubborn. I have days when I can't get my BG's down inspire of several bolus corrections and others where I eat the same thing I eat everyday, take the same dose of insulin, and go immediately into hypo. Usually my BG's spike around 5:00 am but last night at 3:00 am I was at 40 and the pump stopped giving me basal injections - I woke up at over 400.

at least I have an accurate CGM site - I used to put it in my abdomen but the variance was too high and too often. Now I place it on the side of my upper thigh and the readings are almost 100% accurate as compared to BG levels. I do,however, still see the "predictive" levels of the CGM of about 30 minutes before my BG's fall and around a 30 minute lag in rising BG's (time to digest food) while glucose intake is almost immediate on both sides.

I do have some “What the hell is going on here? “ BG reading, but I can usually track down why it has happened. Unlike you LADA 2008, I am a MDI. These high readings usually occur for me after I have been inactive for a few days then have to do a few days of hard physical work. By the second day, I am finding it hard to keep BGL from falling into the hypo levels. If I have had more than one hypo that that falls to the 50 level, I will see higher than normal BGL through the night.
The last reading in excess of 400 occurred because of this scenario. I had reduced my insulin to low levels by the second day but I had to complete a job. By the afternoon of the second day I was eating excessive amounts of carbs to stop the hypos. That night although my level was about 100 (5.4 mmol/L), I injected both Levemir and NovoRapid at the active day rate for my meal. What I did next caused my problem. After my meal I fell asleep in front of the TV, only to wake up about three hour later at about 435 (24.2 mmol/L). What went wrong? My view is that my system, at times, has to pay catch up but gets itself out of whack. I see this scenario occurring regularly when I am at the gym. If my BGL start to fall while I am doing a work out and keep falling, I can not stop this progressing by eating more carbs, (I have even tried Gatoraid). I will stop the exercise when BGL reach 80 (4.5 mmol/L) inject NovoRapid, monitor BGL for the next hour and eat when BGL have fallen below 110 (6.0 mmol/L). I know from experience that when my glycogen reserves are depleted or at a lower level due to several days of hard work, I am extremely sensitive to insulin.
I will not and do not make a NovoRapid correction if I have working hard and then see an abnormally high reading when I have stopped work. I have caused too many hypos by seeing these high readings then injection 2 units of NovoRapid. If the next reading taken 30 minutes later has not fallen, I will do a correction but I will take readings for the next 3 hours to make sure BGL are stable.
Every one is different and it only by keeping good records that I have worked what works best for me.