• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Brittle Diabetes

T

Tracey167

Well-Known Member
Messages
309
Location
Essex
Type of diabetes
Type 1
Treatment type
Insulin
Hi All

Is anyone familar with the term BRITTLE DIABETES? Apparently i was told a few years ago by a diabetic nurse this can happen if you have been diabetic for many years but at the time none of the medical proffession would use this term. But i have read about it in a few books and also an article on the internet (can't remember what they are called). I have even mentioned it to my diabetic consultant a few months back and he agrees that there is a term called brittle diabetes, BUT the diabetic nurses i see won't hear of it. To be honest i am very wary of what my diabetics nurses tell me because they don't seem to come across very proffessional , lets face it i have been type 1 for 30 years proabably alot longer than they have been trained to be diabetic nurses and they have the cheek to talk to me as if i'm stupid and don't know what i'm doing and write on my reports that they have explained in great length to me how to prevent having HYPOS, like my hubby said if they have this great information why don't they share it with us all because not any 2 diabetics are the same our bodies work differently if we were all the same we would all use the same insulin and same strenghs. But this nurse did not explain nothing in great length to me, to be honest she was a right scatter brain. Anyway that's enough of me moaning its just some of these nurses can be a right jobs worth and sometimes annoy me by talking to us diabetics as if we are stupid.

tracey167
 
Well I counter that by talking to them as though they are stupid. They may well not be, but if I feel as though I am being talked down to or talked at, my schools marms voice comes out, and the look I used to give my kids when they were little and mis-behaving. Can't stand being treated like an idiot and nor should you. However they may well have no idea what you are talking about and don't actually want to appear stupid.
As to your problem I'm sorry I cant help.
 
http://www.diabetes.co.uk/brittle-diabetes.html

I found this link on diabetes.co.uk as I was curious to find out more about Brittle Diabetes and had never heard of it until I saw this thread!

I know how you feel about being spoken to like you are stupid! Drives me mad. The fact is no one knows their body and your diabetes like we do! Makes me so cross though being patronised and lectured! So you are not moaning you only speak the truth :) I am not intrigued to find read more about brittle diabetes :)


Sent from the Diabetes Forum App
 
Tracey

I am baffled as to why your D consultant and dsn havent advised you on having an insulin pump. Pumps are for anyone really but due to cost most diabetics have to meet the NICE TA151 criteria for funding but you more than meet it. Although they can appear to be hard work at times, they do curb lots of nightime hypos and highs as the basal rate of insulin can be tailored hour by hour to deliver an amount of insulin that people need so preventing third party assistance.
 
I've just looked back through Tracey's older posts, I gather that she was on one for a very short time but gave it back.

Tracey, you talked about going on the list for a DAFNE course some time ago. Have you been able to do that yet?
 
Never heard of brittle diabetes before but while at my podiatrist last week we were talking about diabetes & she was saying there is over 60 types of diabetes.because i asked her had she heard of type 3 diabetes which i had not heard of until i came on this forum.
 
Hi Tracey,
I would class myself as having brittle diabetes, although it's not an actual medical term, so some people might not like using it. Basically to me it means that control is very hard to get even when you do everything by the book, you would also get a lot of large swings and unexplained hypos and hypers. The pump has really helped me loads hence the user name. Although I do still struggle with unexplained things I'm hoping I can reign in my control even better when I get a cgm this summer.
When it comes to people treating me like I'm stupid I get it quite a bit in my job being a younger female working around the oil industry. I find that being the bigger person always works the best If I keep calm and together and then can correct the other person by showing them I know what I'm talking about they are usually the ones feeling stupid. When it comes to HCP's I always try to go over all the points I want to make before I see them so I'm prepared and don't get flustered.
The best place to come for a rant is always here though, whenever that fails.
 
Hi All

Thanks for all your replies, yes it frustrates me that these diabetic nurses seem to think they have the right to speak to us diabetics as if we are stupid and they know more than us, the thing is they had to be trained to know what they know we have had no choice but to learn and read about diabetes so i think that gives us a head start. like my hubby said you are more inclined to listen to a consultant than a nurse cos of obvious reasons. I explained how unhappy i was with these diabetic nurses yesterday at the hospital when i went to see the dietrian she was abit shocked. I am also going to tell the consultant when i next see him, nothing gets done unless you speak up and these nurses i see are under the consultant so if he don't do nothing about it my faith in the medical proffession as been lowered even more than it was before.

tracey167
 
I've head the term, but not reecently. I don't know if it's a particular twist of diabetes, or simply poorly controlled diabetes. My gut says the latter is more likely.
Hana
PS there's no reference to it in my copy of Bernstein!
 
Hi Tracey167

I have heard about it and it is quite commonly used in Australia and NZ. It is, as Pumppimp says, a term to describe diabetes that does not confirm to normal scenarios when injecting insulin or eating carbs etc. It seems to show large erratic swings in BSL's that can't be explained. I don't know whether it is actually regarded as a medical condition or if HCP's like to ignore it because they can't control it or can't prove it exists. Many HCP's may consider it to just be bad control with the person who is suffering for it.
 
Brittle Diabetes is a term I've heard a lot as in reference to my situation (pancreas removal) I do everything by the book, super-disciplined but....!!
Have so far refused a pump as in my job (I teach yoga) I just imagine I would keep dislodging it.
There are so many variation of diabetes isn't there & for many different reasons, but we are all on the same journey,

Really enjoying this forum,
Thank you to all contributors,
J
 
Hi Tracy,

Yes brittle diabetes is not only possible (sadly) but has been a term used for quite a long time now. I've had brittle diabetes ever since I was diagnosed about 32yrs ago. It's just a way of saying you will never have perfect control of the blood sugar levels no matter how hard you try to control them, something will always cause them to rise or fall and go into what can seem chaotic patterns.

I think these days it's easier to manage than it used to be in the past. A lot of this brittle quality of diabetes is also caused by hormones, but that depends a lot on how your own body responds. For instance, when I get stressed I go through hell with it (due to the cortisol release), when I skip my testosteron it goes all high and I have to inject extra units... other times it just seems to go on a 'rampage' for no obvious reason.

Having said that don't despair even after all this time I still to date (touch wood) have no complications, so it is managable even if it doesn't seem so. Just try to avoid the very high sugars (13+ mmol) and very low hypos (less than 2.0) you'll be just fine :)

Hope that helps,
Frankie
 
This is a very interesting post and yes brittle diabetes is real but also very rare. I was diagnosed diabetic in 1984 and my local hospital could not control my BG. My parents discovered the top diabetic clinic at the time was down the road at the John Radcliffe and got me referred. Thank god they did!! I was very fortunate to be treated by one of the top diabetic proffessors in the world. He understood brittle diabetes and had written medical papers on it. He fully believed it was genuine but that less than 2% of diabetics (at the time at least) had it. The others were poor control due to lack of their own diligence. I was admitted to hospital for several days and attached to a drip where, under controlled conditions, my BG proved it was wild and erratic. At that point I was formally diagnosed as brittle and my parents were given the devastating news that I would not escape major diabetic complications, I would never have children and my life expectancy was at best around 40 :shock: Interestingly diabetes runs in both my parents families and it was often debated whether this led to me being brittle.

The issue that began to arise was that most diabetic doctors were not aware of brittle diabetes and some that believed that it was just poor self control. I have faced this over the years but my medical records do speak for themselves and I refuse to deal with any doctors too stupid to acknowledge the proof in front of them. I am on an insulin pump and it has helped hugely but I still fight a neverending daily battle with my BG. At least on the pump though I am not doing 13+ daily injections when ill and always ending up in hospital on a drip!!
 
Back
Top