Brittle Diabetes


(Jana M) #1

I have had T1 for 22 years now and never been able to achieve control for any extended amount of time, which is starting to take it's toll in a big way; I'm starting to have lots of complications.  I was wondering if anyone else here is brittle?  I read recently that a clinical study showed that people with brittle diabetes showed a greater hormonal response to stress and they think that might be the reason for no control, does anyone know anything more about it?


(system) #2

i hate the word "brittle" but myself and a friend of mine(whose been T1 for almost 20years now?) both consider ourselves "brittle" in the sense that the slightly change in insulin doses will cause one extreme or another. if i add one unit too much to my lantus, i'll start having lots of lows, if i take away one unit of lantus more than i need to, i am always high. with the pump it was the same. 0.25 of a unit would cause HUGE BG changes in me. she's similar as well. neither of us have "ideal" control, though I know her A1Cs are usually in the 7's, where as mine are usually in the 8's.


(TextingMyPancreas) #3

Batts,

I am the same way.  I don't use the term "brittle"... I'm actually unfamiliar with that term.... but I do attribute it to sensitivity.


(system) #4

my mom flips out when I use the word "brittle" to describe my diabetes(the few times i have). This is the description i got when i googled "brittle diabetes"

"Brittle diabetes, also called labile diabetes, is a term used to describe uncontrolled type 1 diabetes. People with brittle diabetes frequently experience large swings in blood sugar (glucose) levels. These cause either hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), which is more common and sometimes extreme."

"The person with brittle diabetes is frequently hospitalized, misses work and often has to contend with psychological problems."

I find the last description pretty offensive if I am actually a "brittle" diabetic. I think the term in general is offensive though...

 

It's suppose to be caused by hormone response..so it's most common in women.

From what I've read about it..having "brittle" diabetes is a huge extreme and you have to spend time in hospital to treat it..I don't think just having complications after so many years with D is something I would consider makes you a "brittle" diabetic....seems like it's more to refer to someone who needs supervision to control their diabetes.


(TextingMyPancreas) #5

Ooooh.  Then, I retract my "I am the same way" comment....  ha.  Thanks for looking that up!


(system) #6

i know some people use the term "brittle" diabetic to refer to someone who is highly sensitive to insulin and usually doesn't have "ideal" control(like i do..tho i try not to use that word)..but the actual meaning is pretty extreme lack of control..


(sarahslp) #7

I agree about the term! I can be sensitive to changes, so I have more BG fluxuations than is ideal. But, being "brittle" seems to have a negative connotation, esp the way doctors use it, like there's no hope for you. My "sensitivity" isn't extreme, but I HAVE been able to improve my control by testing more often.


(cptsales) #8

Brittle is a term my doctor does not want to use for me and my situation, but it does fit. I have huge swings in BG levels, and started having some complications in 2007 with my eyes. I still have wild swings, 70 and 80's to 300+ back down to 70's all in the same day and know it is not good for me, or is good on my general health and mental well being.

I have gotten OK control via the pump, 7.5-8.1 A1c's, and no new concerns with my eyes according to my ophthalmologist. I would like to get the number below 7.0, and am about 1-2 months away from buying a CGMS system.

Hang in there, reach out to your family, friends, and this network for support.


(akint) #9

Hi Jana......I have never been able to sustain control for long periods of time.  I have a hard time getting my A1C below 7......I never heard of brittle diabetes.  I am not missing work because of diabetes.......I feel like crap a lot because of the fluctuations in my blood sugars.  I inject since the pump doesn't work for me:(  I am starting to see some complications.....some beginning stages of retinopathy and I see a nephrologist (kidney doc).  My kidneys are functioning at 85% and I get blood work done yearly for it.  I am going to have to do a little bit of research on this term!


(cc_racer) #10

My endo regularly calls me "brittle" he says because I have been diabetic for so long (23 years) and have such awful control of my BG's.  I do not really take offense even though I used to think that doctors used to term to refer to patients who would not comply with doctors orders and therefore had no control.  Sometimes I wonder if my doc believes me when I tell him how hard I am trying and how little good it seems to do.  I have been seeing him for almost a year now and have gotten my A1c down from over 9 to 7.8.  I was very happy until he said that was probably as good as I would ever get :(  I hope to prove him wrong after I get my first CGM in the next few months.

 

It has also crossed my mind that doctors made up the term "brittle" just to have a place to put diabetics who do not respond well to whatever treatment the doctor thinks is best.  Many doctors like to think that they have all of the answers, and if you are not getting better on whatever regimen they put you on, it must be something wrong with you, not them or their science.


(Jana M) #11

[quote user="cc_racer"]

My endo regularly calls me "brittle" he says because I have been diabetic for so long (23 years) and have such awful control of my BG's.  I do not really take offense even though I used to think that doctors used to term to refer to patients who would not comply with doctors orders and therefore had no control.  Sometimes I wonder if my doc believes me when I tell him how hard I am trying and how little good it seems to do.  I have been seeing him for almost a year now and have gotten my A1c down from over 9 to 7.8.  I was very happy until he said that was probably as good as I would ever get :(  I hope to prove him wrong after I get my first CGM in the next few months.

 

It has also crossed my mind that doctors made up the term "brittle" just to have a place to put diabetics who do not respond well to whatever treatment the doctor thinks is best.  Many doctors like to think that they have all of the answers, and if you are not getting better on whatever regimen they put you on, it must be something wrong with you, not them or their science.

[/quote]

Doctors have used the term brittle to describe me in the past, but not lately.  I don't have frequent hospital visits because it doesn't help anything when I go to the hospital for blood sugars, every time I ever have I wait for a couple of hours for test results and by the time they come back everything is back to normal and they tell me to "keep doing what you're doing".  I have also been diabetic for 22 years and never had control and have those horrible swings.  The other day I was at 422 before bed so I did a correction injection then woke up a couple hours later at 41, so I had glucose tablets and in the morning I was back to 375, so I corrected less than my normal ratio and still ended up back down to 90 a couple of hours later....so frusterating.  I know 90 is not low, but because I came down from so high I felt low.  It's so nice to know that other people experience the same frusterations and that I'm not just crazy or something:)


(Dylan404) #12

I would consider myself brittle in the sense that my insulin needs can vary greatly from day to day based on stress and other factors like exercise - that being said it is still possible to maintain an A1C below 7 as someone who is 'brittle' 


(Maikuru) #13

     Like you i myself have also been fighting with diabetes for 22 years, 8 months and 13 days as of this post.  I myself dislike using the word brittle though sadly it does describe accurately how much harder it gets to control type one diabetes as a person who has it ages. A lot of people easily forget that the human body is not designed to last without the insulin that our pancreas once naturally produced. The insulin we inject ourselves with is at best a substitute much like a person who has had a kidney or heart transplant.  A bandaid treatment to a very serious health condition. 

         What most fail to realize is all that has really been done medically is to provide a way to prolong our lives and slow down the process of our bodies developing complications and breaking down.  We are treating the symptoms and trying slow the longterm effects of our diesease rather then cure it so naturally as we age our condition becomes more "brittle"  and our sugars become harder to control despite our best efforts.  Like machines and rust or the earth and erosion, the human body is no different given the wear and tear of our lifestyles, habits, diets and health conditions.

    Insulin and trying to maintain a certain A1C level is a war of attrition through constantly trying wrestle control over bloodsugars rather then find a cure that will allow our bodies to do what it was originally designed to do.  Everyone here knows that healthy and normal can be subjective words. However  a trully healthly and normal person does not have to compensate and calculate for factors like food, stress, excercise and medication. Not to mention dealing with the nasty disadvantages of experiencing the physical aftermaths of  low and high blood sugars and the side effects of facing the eventual development of complications. So the least thing we can do here is be realistic about our health and quit being naive about what we are all going to eventually deal with in another ten ,twenty, or thirty years if we are lucky. Remeber keeping a postive mental apporach while taking steps to prepare for eventual issues with complications will always be more effective then trying to tell yourself that controling your bloodsugars better will give you a "normal" and trouble free life of 70 plus years. Only an idiot believes that.  Be honest with yourself and pay attention to what your body is trying to tell you and you will be better for it in the long run.


(Jessica L) #14

Now this is new to me and worries me a little. Tho I am keeping in mind my daughter is 9 and she is going through puberty. So it might just be that. Her numbers are all over the place. She eats the same thing for breakfast everyday and the same thing for snack (free food) everyday. I give her the same amount of insulin normally she doesnt need a correction in the mornings. She does have PE 3 days a week at school 2 of those days is in the morning. On those two days doing the same activity in PE by lunch time she can be in the low 100's or she could be in the mid 200's. So all the factors remain the same and there is a big difference in her numbers. Its the same way at home on weekends. I have also seen her BG go from 120 to over 300 in about 15 from stress alone. Just yesterday she was all upset and flipping out over well nothing. She checked her BG and was at 212. She wanted a frosted store brand cupcake. I had a hard time finding carbs for it so I guessed it was at least 30 tho I saw some that said as high as 46. I gave her 3 units by dinner time 2 hours later she was at 109. I know good and well the 212 was because she was flipping out and came down so well because she chilled out.


(paulg765) #15

I have noticed an increasing number of adult Type 1's joining Juvenation lately and I'm reasonably sure that like me, most of them would agree with Michael's post regarding Type 1 becoming more difficult to control as you get older.  There is both a physical and mental toll Type 1 takes on you after struggling with it for multiple decades.  It's not that you can't lead a reasonably happy and productive life, but that there will be times when you have to "cut yourself a break" and realize that there will be some days when your Type 1 will cause you to you feel bad, make you very frustrated and unhappy, and limit what you are able to or want to do.  But, keep the faith that tomorrow will very likely be a better day and you'll do fine.


(sarah0322) #16

I have the same problem with getting my blood sugars in the normal range. It seems like at least once a day, my blood sugars are in the 300s. My doctor put me on the Symlin pen a couple of months ago, and I lost weight and my blood sugars were getting back to normal. Now it's like it doesn't have the same effect, and I am back to battling my high blood sugars. I watch everything I eat and work out about 4 times a week, so I am so frustrated! I've tried adjusting my insulin doses, and that just leads to a roller coaster effect: it's too high, then too low, too high, too low....If anyone has any tips that could help me, I would really appreciate it!!


(courtcap8) #17

Dear Michael,

I just wanted to let you know tht your post really bothered me. I am sure that everyone on this website already knows  that insulin is NOT a cure, but it is medically proven that with good control that a diabetic can live a happy and HEALTHY life WITHOUT  complications !! Everyone on this website very much wants a cure !! But unfortunately it is not available right now. If I thought about it the way you did instead of thinking of it as you said "like an idiot" I would think of diabetes as a DEATH SENTENCE ! Now granted, I have my down days where I think that I am going to die miserable and no matter how hard I try I am going to get complications but if I lived everyday thinking that way I would not get very far ! Diabetes is a horrible life threatening disease, but there are many people who live happy lives with out complications at ages of 70, 80 years old !! There are even some on this website. It definitely is hard to controll BG levels and insulin dosages but it is definitely doable. My T1 is a obstacle but it is NOT a death sentence ............


(system) #18

[quote user="Courtney"]

Dear Michael,

I just wanted to let you know tht your post really bothered me. I am sure that everyone on this website already knows  that insulin is NOT a cure, but it is medically proven that with good control that a diabetic can live a happy and HEALTHY life WITHOUT  complications !! Everyone on this website very much wants a cure !! But unfortunately it is not available right now. If I thought about it the way you did instead of thinking of it as you said "like an idiot" I would think of diabetes as a DEATH SENTENCE ! Now granted, I have my down days where I think that I am going to die miserable and no matter how hard I try I am going to get complications but if I lived everyday thinking that way I would not get very far ! Diabetes is a horrible life threatening disease, but there are many people who live happy lives with out complications at ages of 70, 80 years old !! There are even some on this website. It definitely is hard to controll BG levels and insulin dosages but it is definitely doable. My T1 is a obstacle but it is NOT a death sentence ............

[/quote]

thanks Courtney :) I was bothered by Michael's post as well, but was unable to think of a way to respond(which isn't like me at all..so you KNOW i was extremely bothered about it! ha ha). I may not have the best control, but I hardly think of this as a death sentence. I honestly believe I'm gonna live til I'm at least 85..with or without complications, with or without a cure..i don't think about that stuff! I think that focusing on what may or may not happen in 10, 20 years from now is morbid and doesn't help someone deal with this day to day. if that's what we should focus on..we might as well give up taking care of ourselves the best we can now! stop wasting money on supplies, and just "give into what's going to happen".


(LStevenson41) #19

Ditto to Courtney and Batts! I completely agree with you both.


(cptsales) #20

I agree with Michael's response. I thought I saw at one time a statistic where about 80% of type 1 diabetics will develop some complications due to the disease sometime in their life. Yes better control can help reduce complications, but I don't believe good control will ever eliminate complications. The longer you have D, the more chances of you having even brief highs, will increase vascular problems which are the root cause of most of our complications; kidney, eye, and appendage problems. 

I don't like looking thru filtered glasses when I am looking at life, tell me how it is, and deal with it.