Does anyone have Brittle diabetes?

Hi, I have Brittle Type 1 Diabetes. I am on an insulin pump and I still have problems with my glucose levels. It is either extremely high or really low. I don't have any answers for you right now I am still struggling with mine and trying to educate myself. I was diagnosed about a year and half ago so all of this is still new to me and a little bit scary. I'm not as terrified as I was in the begining, but it still worries me. I wasn't diagnosed with Type 1 until I turned 61, so this is all new to me.

Yes I was 12 years old at diagnosis and was told I was brittle. My blood sugars especially when I am hospitalized go from 800+ to 30 and I no longer can feel the low coming on. On the pump I simply passed out so I went back to Humalog x4 a day and Novolog both am and pm. On the pump it was like once a week I woke up to paramedics looking for a vein. One paramedic told me that he would not look for veins just simply gave me glucagon. The only symptoim I recognize is nauseau and or hittting the floor and unable to walk. I read a statistic and <5% of diabetics are brittle and it really angers me that most people and doctors treat the probllem as a control issue. If even they can not control blood sugars how can they expect me to do so.

Hi Jupton1. This is pennycent01. I was diagnosed with type 1 at the age of 12, 30 yrs. ago. I have brittle diabetes. For the last about 10-15 yrs. I can't even drink any sugar free sodas because my pancreas reads it as the same as sugar. I mainly drink water because of this. For my low blood sugars I can drink a diet soda or having some candy will work the same.

Day…I have had brittle diabetes for past 30 yrs. If your nephew took a fast acting shot, drank water and an hour later it still is going higher he might need to see a Dr. with my own diabetes this could be a sign of infection.

I don't believe that "brittle" is a scientific term, but a reference to a lack of control of diabetes.

I have a nephew 11 yrs old and is a brittle diabetic. I was working tonight and they called me with bs of 472 I had them adjust with small ketones some water. One hour later he is 579 with very large ketones His target range is about 140 so since they had just gave a adjustment for the high one hour ago I just adjusted 20 percent of his total daily dose for the ketones. Any ideas or has anyone had this out of control situation at nights when you know the child has not got into anything he wasnt supposed to.

yes I have been a brittle diabetic for almost 35 years and the only time i wasn't was during my pregnancys backwards I know. I have tried everything inder the sun I just have to test my sugar way more often.

Good golly yes and it is NO fun at all!! Have struggled with being brittle my entire life. Yuck! It is unbelievably frustrating!

I do. And it's hard to handle. To high, to low. And everything disturbs it…from nerves to illness.

ive brittle diabetic!

my bg can go high/low/norm as it wants

wether i ate good-food/bad, sometimes i eat according to wht i shud eat yet my bg will b high, sometimes, i eat terribly, n i get good bg

SOMETIMESSS, I get too lazy to control it~

and i just eat what i want, n i change the dose myself,

=)

I understand that the high bs is from probably what you ate yesteday except for the immediate response from carbs, which in turn woud give you ketones in your urine (sugar spilling over into your bloodstream) right? As ketones are a results of high blood sugars. Which in turn give us high Hgb A1C? Do you agree?

I am a "brittle" diabetic. The pump has helped, but I still suffer from "unexplained" highs and lows.

This is good to know as I am about to give my nephew a pump providing insurance approves it. Although your are still having highs and lows has this overall improved? And has your Hgb A1C improved?

thought i would bring this one up again, since someone asked.

here, i brought it up again.

Hi I am also a Brittle Diabetic. have been one for nearly 30 years. It can be a real pain because the powers that be constantly accuse us of cheating and eating what we shouldn't. I assured them that I wasn't cheating and needless to say ,they didn't believe me. I was quite astonished. I am very careful about my diet and monitoring etc. But I still have wide swings. Never know when they are going to happen.I have just learned to live with them. I am also a Registered Nurse with extra course work in Diabetes Managment.I guess none of us are immune to criticism. I just mush on. HUGS

I remember my father telling me about the problem my grandmother had about the problems with wide swings in blood sugar. They (the dotors I think) didn't believe what she described until once it happened right in front of them. (I think it went from high to low very quickly but I'm not sure on the details and neither my father or grandmother are still alive to fill me in on it).

yes i have brittle diabtes. my sugars are to high to register on the meter thats during the day and ealy morining my sugars have been as low as 23 my 8 yr old has saved me many times ive been in and out of the hospital icu alot during the summer i also take up to 8-10 shots a day

I AM 44 YEARS OLD AND I HAVE HAD TYP 1 DIABETES SINCE THE AGE OF TWO,I AM AN EXTREAMLY BRITTLE TYP 1.I WAS ON FIVE SHOTS A DAY AND STILL HAD VERY LITTLE CONTROL,EVEN WITH A DIABETIC DIET.I FELT LIKE IT WAS A LOST CAUSE BECAUSE NO MATTER HOW HARD I TOOK CARE OF MYSELFE THE DIABETES WAS IN CONTROLL.I KNOW HAVE A INSULIN PUMP AND IT HAS GREATLY IMPROVED MY HIGHS,AND LOWS.HAVING TYP1 REQIRES A FULL TIME JOB.JUDY REDINBO

yess i do hve!

my BG can change as it wants, from 3.5mmol/l to sometimes… 16.0mmol/l.. i know that i cnt eat such carbs as cakes, biscuits larger than the adviced portion, but sometimes the inner me really wants it, and its hard to resist it. i kno its bad, but it cant b help, unless ive my doctor whos going to scold me everytime i did wrong!

i had never heard of this before,it is amazing all rhe information i've been getting on this site.

I'm about as brittle as they come. I've been this way all 46 years that I've had this disease. Most doctors don't believe I stay on my diet. I'm on a pump now which has made a significant difference (better) but still have fluctuations - swings or whatever you want to call them. Any suggestions would be appreciated! Paula

Kudos to all the people who so bravely deal with this condition. This has been a really enlightning discussion for me. I work hard on trying to control my BG but I can't even imagine working as hard as many of you are required to do.

All my best…Misty

never heard of this.. however I'm type 2 insulin dependent.. and have had readings jumping around a lot.. been in exceess of 500 as this is only as high as meter reads to lows 30 to 40 in the past.. sometimes jumping from one extreme to the next.. and always checked my meter afterward but found it to be acurate.. I seldom have low problems though.. mostly run high. lately 200 to 300 avg… getting another A1C tomorrow and expecting more than likely an adjustment on my insulin comming as usuall.

My son is a brittle diabetic. We have had to call the parametics many times to take him to the hospital. Once his bs was below 10. Once it was as high as 1900. The hospital staff were amazed that he survived. However, as a result, he has many complications. We have finally stabilized his BS somewhat now. The hi's and lows are not as deadly now.

I am sorry to hear you son has that type of diabeties. I dont know much about that type and I am glad he is doing better.

It must be hard on you has a parent. Your son is lucky to have someone to care so much about him to get on this site to learn about people dealing with diabeties.

This is interesting!! I was a brittle diabetic . I couldn't get control any how. I am type 1 and now that I have the pump, I'm doing great. I wish pumps were here 40 plus years ago.

I have been trying soooo hard to manage my blood sugars and for now I am doing very well. months ago my A1C was 10.5, two weeks ago it was 7.2. I started writing down everything that goes into my mouth and checking BS 8-10 times a day. I know it is a pain but I sure do feel and think better.

Yes I have diabeties. I actually have type two. Why are you interested in learning about diabeties? Do you have it or does afriend or family have it?

I had never heard of this until I read this article.

This is what I admire about this group.There is always something to learn. They are always up todate.

i too am what is called a "brittle diabetic" and find it hard to controll my diabetes

I too am a brittle Diabetic with wild swings in my sugar on a daily basis. It puts me in a rough position with my endo people. They know I'm a medical prof and assume that I'm causing this due to non compliance. After several months they then realize that its the nature of my illness. I began my diabetes this way and it hasn't changed in 30 years. I'm on the pump and this seems to be of benefit. We've tried lots of other methods to control my sugars but the pump seems to work the best. I developed an ocular bleed 5 years ago and with a lazer tx it was handled well by my docs. Any neuropathy that I have is dealt with by B12 and anti depressents. My kidneys "Thank God" are well. So I just keep plugging along and do the best I can. About once a month it does wear me down and I sleep one day for about 12-16 hours.After that I'm good to go. Keep a positive attitude, there are diseases far worse and I'm blessed that I don't have them. Blessings Maggie

Well just last week my dr called me brittle, but I already knew that. My BS can go from 400 to 40 in 2hrs and then go back to 400 2 hrs laters.

Yeah, it really sucks the swings come and go but the lows really sneak up on me. I have to react quickly, I get the shakes really bad blurred vision and ofcourse the headaches. When mine is high it's just like having a fever you can feel the heat coming out of your ears. I also have tempiture changes I don't know if anyone else experiences that or not but I get real hot. my sugars are doing a little better now taking FOUR SHOTS a day though. My bgs range from 300s to 50s

I also am what is called a Brittle diabetic. The ups and downs were driving me crazy. I changed Drs and my new one put me on a new insulin regime. I now take Humalog before I eat, along with an injection of Byetta before breakfast and before dinner. At night I take an injection of Lantus. For the most part my diabetes is now in control. The Byetta helped me so much. Ask your Dr about it. Good luck.

I have several low bs's but not due to "brittle". Mine is my diet where as everyone counts carbs I give myself injections based on my bs's. I eat 6 small meals a day and 2-3 snacks. I have severe food allergies so my diet is limited and most of my carbs comes from fruit. I drop to 20 and dont even feel it. until it is too late. The last time it dropped I was driving, I had to pull over and call 911. Now I carry a 6-pack cooler with me at all times when I drive. But my endo has never called me "brittle" but have heard of it before. I am on my 6th endo, in almost 15 years. And each one of them has told me something different on my diet and eating habits and excersize. So Im still looking for one that is more knowledgeable than the one I have now.

I think my son who is 15 has brittle diabetes. He has never been in control and his blood sugars go high to low in a heart beat. It scares me to death, and I am not sure what to do…I think his Dr. is getting frustrated as well as I am.I am letting him take care of his diabetes by him self at this time, because he tells me I get mad at him about it.He eats all the time, and I do not think that he is taking his meds like he should, but i am trying to keep quiet, so that he can deal with it..

My doctor has called me brittle. I have been uncontrolled Type 1 for 17 years. My bs will range from the 2-300's down to the 40's and 50's all in a day. I watch my diet and take my insulin trying to control it. I take Humalog when I eat and when my bs is high and that usually brings it down. I take Lantus at night. It is the extreme swings in bs that cause the problem with brittle diabetics. The best my A1c has ever been was 9.6. The worst it has been was 12.

my 4 year old son has it. it sugar can be fine and out of the blue shoot up to 600. we just have to check him more often.

yes I have brittle diabetes. It goes from 414 to 23 in a given day. The lows come with none of the usual warnings anymore, now when its low my vision is poor and sometimes I cannot even figure out where I am. Thurs. I had to have laser done on my left eye as it was "leaking" badly.It scared me to death. I have fought getting the pump, but I am giving it serious thought.Please if anyone uses the pump can you please let me know about it? thanks

Brittle diabetes characterized by large swings I think falls into two classes.

The first I believe is due to both elevated insulin resistance and absorption issues which often seem to go hand-in-hand.

Second there are those with wavy rythms. I'm one of those. I crash in the night, have a DP from hell, run low all afternoon, then take a long high run in the evening.

The first can be addressed by diet, controlling weight, and increasing exercise levels - very tough for most to do.

The second is finding the insulin regimen that fits you. Start out by basal testing. Find the gaps in coverage and your tendancies. Apply fixes and test. Then proflie all meals and find the right mix of insulin, timing, and food quantity that will keep your numbers good.

For pumpers this is fairly easy to do, but it does take knowledge and work. It's much tougher for MDIers, but it can be done.

For me pumping has been a God-send! My brittleness is gone, history, part of the past! I now understand how I behave every hour of the day and feel totally confident with my control.

A1C's of 6.4, 6.3, 6.1, 6.0, and 6.0 since pumping down from 7.3 on MDI. Hypos are now infrequent.

I have been a Type 1 diabetic since age 5, and was told many times that I was a "brittle diabetic". Diabetes has "come a long way" in the almost 40 years I have been dealing with it. When I was younger, the only time I got BG readings was when I was hospitalized or on rare occasions. I had 2 children, and that is when I started testing my own blood sugars, however, I basically quit once I had the baby. I lost the vision in one eye shortly after the birth of my second child following the failure of 2 surgeries to repair a detached retina. I had laser treatment on my other eye almost 20 years ago followed by cataract surgery a year ago. I am still struggling to adjust from near-sighted to far-sighted. I am now on an insulin pump and love it! It sure beats the 4 shots a day I was taking! I also don't have to eat when I am not hungry just because I took a shot several hours ago. My last A1c was 5.7 and my endocrinologist is concerned that I may be having lows I am unaware of. My vision is my first clue to a low or high. I would really encourage you to give it a try. Although it is one more "constant" in our already busy lives, it is also a convenience.

I have had brittle diabetes for 32 yrs. and I am using the pumb now and I have so much better control of my b/s now . My a1c has gone down also and I feel like a new person.

My six year old is brittle and recently got the pump. We have the medtronic pump, it definitly has help with his independence and fine tuning. It isn't perfect though there are a lot of site failers and airbubbles in the line, and he just recently had his first seizure he was only 58 and 4 hours prior was 155 and had no insulin (before brkfast). So I personally think it is a nice convience but if you brittle your brittle and just need to test test test (i test my son every 2 hours and 3 hour at bedtime)

I am a brittle diabetic and have been on a pump for about 20 years. It DEFINITELY has helped. I still have the occassional jump in BG levels… and the occassional drop to near nothing, but not NEAR as often as I used to.

I HIGHLY recommend pump therapy!

It has been suggested that this is what I have with my fluctuating between highs and lows so frequently. I'm still producing insulin though so they can't classify me as a type 1 (YET) I just don't get the same amount all the time, sometimes too much (lows) and sometimes too little (high's). It's been suggested that I'm in a very long 'honeymoon phase', I'm sure the Type 1's on here have heard that term. Personally, I think my pancreas is just 'challenged'.. lol (I know not funny but I've had this for almost 45 years… it's getting to be a joke to me now) there is another word I use besides 'challenged' but it's not very nice so I don't want to offend anyone by using it here… :)

*Judy (JP)

Thanks for the info,I wanted to understand this condition a bit more.John

just curious JP what advise have you received about your physical activity in relation to your sugar hi & lo swings

JP - I love your term "challanged pancreas" that's the best definition I've ever heard. Fits me too! Paula

My grandmother was a brittle diabetic. Her blood sugars could change very quickly. I was aware of the term long ago.

While at one point my endocrinologist suggested that I may have brittle diabetes, I'm not sure that I would agree with him. (This was before I started on the pump though; once I was on the pump I could pretty well account for all the highs and lows).

As far as I know, brittle term only applies to type 1. I hadn't heard the term labile before a couple of weeks ago.

You know what John, my sister-in-law has not been diagnosed as a diabetic, but she often has bout of low blood sugar. She was bad enough once to call 911 and be transported to the hospital. I bet that that's what she is, a brittle diabetic.

I had never even heard of it till today.I just thought it would make a good topic because it hadnt been brought up before..JU

No she is just hypoglacemic