HI,
I and a type 1 brittle diabetic of 25 years I have insulin pump and a cgm both from Medtronic but the cgm those not work for me due the rapid changes in Bg. I would love to know how many brittle diabetics are in this website to talk about experiences, situations, suggestions for those of us who can not be put in a box to explain the unexplainable regarding our everyday bg fluctuations. Looking forward to hear from you guys.
Have a Great day!
-Ann
Ann I have a different perception, not quite philosophy, though an evolving view which in time I hope will change for the better, and improveā¦ I can hope anyway. Regardless, I offer a skeptical idea in response your question. Forgive me it is not entirely/well evolved as yet. I ask your.patience, I hope I will hone it better (and far more briefly)ā¦
I propose that the āBrittleā idea only works fundamentally on a series of wrong ideas
Fundamental among them that ācontrolā is in truth ārealā
That control is not a comfortable, if unfortunate āillusionā
Now before you break out the hot tar and the feathersā¦ consider if we are labeled whether ābrittleā or ānon-compliantā or some other negative labeling concerning our self-care, our diabetes management. Once labeled in that way, burned with the giant proverbial red hot branding ironā¦ nobody has to look any further than āā¦ohā¦ she doesnāt tryā¦ or heās not doing what he must to make āXā happenā¦ā. I ask how does one distinguish between either or those options and the possibility the given approach being used is actually garbage, and in fact simply does not work? [Gasp ātheyā could at times actually be wrong???]
There are basic concepts which do work in the generic picture, but when it becomes you or I personally, the generic gets tweaked awfully hard at times. The pretty dose formula has to be mutated beyond recognition.
If control were an absolute certainty āguaranteedā then why do any of us have lows?
If control were ārealā (a solid unchanging thing) then why do complications develop?
For ācontrolā to have any real meaning it must therefore be perfect control. ATI (Absolute Textbook Ideal) diabetes self management. Anything short of that literal ideal allows occasional lows, highs, some minor background problems of all kinds to evolve.
When they happen, even if randomly-rarely how do we then pretend that āreal controlā exists.? We are vigilant, doing the very best that each of us knows how.
I reject the label ābrittleā and say come up with better explanations,-approaches that will work.
Labels that do not brand me, and call me a failure. Doctor you too share my blameā¦
Hi guys! I appreciate your time and responding to my post!
I respect both your opinions, thank you for that. I does noot bother me to be labeled as brittle which to me it means: I follow tight control and even with that tight control I can not explain the bg changes that I experience everyday. I have read a lot and DO TRY TO CONTROL MY BGās VERY WELL. MY RECENT A1c WAS 6.1 In my page I explained that I have and insulin pump, the CGM from Medtronic does not work for me cause it can not keep up with the bg changes hr by hr. I DO TEST 10 TIMES A DAY faithfully due to those sudden changes, that is why my prescription for test strips is 300 strips per month. As a diabetic of 25 yrs I am PROUD TO SAY THAT IN OPTIMAL HEALTH THANKS TO MY TIGHT CONTROL.
.
An example of my āBrittlenessā of as you put it Not Good Control in a controlled environment: A couple of years ago when I was younger I was hospitalized due to keto-acidosis, 1 week in ICU and 2 months in the hospital. By the end of my 2 months I decided to signed myself out of the hospital for the following reason: been a control environment, control diet, control medication times etcā¦ the hospital required 3 continuous BG to be within a ānormalā range" to discharge me. Well, with all that monitored and control treatment 5 days passed all around the clock monitoring and they were not able to get those 3 readings. That is when I decide to get out of the hospital, go back to the real world and start a path to have even better control. Another example was 5 years ago when I got pregnant with our only son, having a insulin pump I was testing 14 to 18 times a day keep a 6.0 A1c but was never able to keep bgs controlled. And let me tell you that was TIGHT CONTROL and even when I was bed resting in the hospital due to complications with preeclampsia nothing changed the Bgās fluctuated a lot too.
I am not trying to convince people about what brittlenes is (not good control as you put it) or not, or even the question as diabetics: can we achieve ānormal rangesā? All I am seeking here is what we are doing now; bringing people together to talk about it. Not to condemn anybody or pass judgment; just exchange thought, opinions, experiences, ideas, advice or ways where people have found successful ways to deal with it and achieved better results. That is all!
Again, thanks for your input and your time!
Take care,
-Ann =D
Hi guys! I appreciate your time and responding to my post!
I respect both your opinions, thank you for that. I does noot bother me to be labeled as brittle which to me it means: I follow tight control and even with that tight control I can not explain the bg changes that I experience everyday. I have read a lot and DO TRY TO CONTROL MY BGās VERY WELL. MY RECENT A1c WAS 6.1 In my page I explained that I have and insulin pump, the CGM from Medtronic does not work for me cause it can not keep up with the bg changes hr by hr. I DO TEST 10 TIMES A DAY faithfully due to those sudden changes, that is why my prescription for test strips is 300 strips per month. As a diabetic of 25 yrs I am PROUD TO SAY THAT IN OPTIMAL HEALTH THANKS TO MY TIGHT CONTROL.
.
An example of my āBrittlenessā of as you put it Not Good Control in a controlled environment: A couple of years ago when I was younger I was hospitalized due to keto-acidosis, 1 week in ICU and 2 months in the hospital. By the end of my 2 months I decided to signed myself out of the hospital for the following reason: been a control environment, control diet, control medication times etcā¦ the hospital required 3 continuous BG to be within a ānormalā range" to discharge me. Well, with all that monitored and control treatment 5 days passed all around the clock monitoring and they were not able to get those 3 readings. That is when I decide to get out of the hospital, go back to the real world and start a path to have even better control. Another example was 5 years ago when I got pregnant with our only son, having a insulin pump I was testing 14 to 18 times a day keep a 6.0 A1c but was never able to keep bgs controlled. And let me tell you that was TIGHT CONTROL and even when I was bed resting in the hospital due to complications with preeclampsia nothing changed the Bgās fluctuated a lot too.
I am not trying to convince people about what brittlenes is (not good control as you put it) or not, or even the question as diabetics: can we achieve ānormal rangesā? All I am seeking here is what we are doing now; bringing people together to talk about it. Not to condemn anybody or pass judgment; just exchange thought, opinions, experiences, ideas, advice or ways where people have found successful ways to deal with it and achieved better results. That is all!
Again, thanks for your input and your time!
Take care,
-Ann =D
Ann-
Youāre diabetic. Plain and simple. You are under good control, obviously with an A1C of 6.1, no complications and a healthy birth. There is NO such thing as brittle.
T-1 37 years. 2 healthy births (6 lbs for one child and 6.8 lbs. for the second child). No complications. A1C 7.2
BG āswingsā¦ā This past month would make me the āBrittlestā if there were such a thing. Thursday 8/27 I was 22 at 5am and 485 at 5pmā¦ I had pneumonia and was on prednisone.
Drop the brittle - trust me!
Ann-
This topic ā¦ āBrittle Diabetesā has been discussed before.
Take a look at this link.
Ann, I think that youāre wrong about this-- even though, almost always, youāre ABSOLUTELY RIGHT with regard to persons making this claim. :))
There is such a thing. But, I agree that somewhere between 98% and 99.9% of PWDās who claim āIām Brittle!ā are only using it as an excuse for inattentiveness, lack of knowledge, lack of working CGMS equipment, or (most common) failure to execute and follow through on the things they DO know about controlling bG.
All PWDās are unlucky, no one deserves this disease. But PWDās who are even less āluckyā than you (such as I), sometimes develop un-fixable counter-regulation problems. Of various kinds. For example, my liver will sometimes start blasting glucose levels for no reason at all. (Not illness, Not with any Hypos during preceding days, no changes in living situation or feelings.)
Hereās another example: Although many Hypo-unaware people do recover their sensitivity by avoiding Hypos for a while (typically, in just a few weeks or months), a few people with lost awareness canāt bring it back to any significant degree.
āBrittleā, properly used, is short-hand for complications which make bG levels fly around, independent of well-known reasons (food, insulin, stress, rebound, illness, steroids, other drugs, and etc.) Most of the people who claim ābrittlenessā are not truly brittle, but it does exist. And, as mentioned by others in the Thread you mention below, such conditions appear to become more likely to Present with increasing age.
I am a lot older than you.
Aside from the philosophical discussion as to if someone should be labeled as ābrittleā or ānot brittleā, I have accepted the term because I frequently see myself varying throughout the day with no explanation at all. The first respondent indicated that he is only brittle when he eats wrong. I wish my life were so simple. The last respondent said that she had one ābrittleā episode on 8/27 when she had pneumonia. Being sick is another understandable reason for ābrittlenessā.
I feel as if I am being condemned for accepting a term that describes the majority of my diabetic experience, whether it describes me or not. I am not excusing modern medicine by stating that variation is my norm and that I desperately would like to be able to look back at my day and say, āoh yeah, that makes sense. my bad.ā As it is, even though I have a top notch Endo, who is well recognized in the field, he has taken the years of data that I have provided and said that I am in the top 25% of his patients as far as risk of complications, but there is no formula that can relate carb intake, insulin intake, and bg in my history. What I get is, āwell, your A1C is good, so be happyā. However, on most days, I am correcting throughout the day and varying widely and donāt know why. I have been told not to chase the bgs by nurses, but that has ended me in the hospital for dka or unconscience, and being revived by a relative or friend with glucogon injections or paramedics with a glucose push.
If this site has already placed a taboo on the word ābrittleā and probably run off anyone who disagreed, perhaps I could use the term āfrequently variantā and seek some support and advice from others that are still struggling to understand their diabetic experience. In my life, I canāt remember a day where I varied by 5 points across 6 checks. Is there anyone else that has no idea or explanation for why their bg readings fluctuate constantly to the point of personal endangerment?
I canāt take solace in my A1C because that is an average. That doesnāt express standard deviation. If every day I have 2 hours of hypo and 2 hours of hyper, then my average is perfect. However, that does nothing to express the feeling of frustration at being out of energy and unable to function every other day, regardless of what I eat or how healthy I am. Can anyone say they experience the same, or am I alone in this?
I think I am going to start an appropriate discussion that really helps me to find some people with similar experiences. The discussion is going to read as follows:Is there anyone else that has no idea or explanation for why their bg readings fluctuate constantly to the point of personal endangerment?
Looking forward to hear from you guys!
Take care,
-Ann
I have to agree with Erin, but I want you to know that we all support you regardless of your terminology. Your diabetes sounds better controlled than most of our members here, to be honest.
I put in the same amount of effort that it sounds like you do and currently have a similar A1c and test as often as you do, wear a pump, and a CGM, and I feel like I have the same outcome as you sound like you do. And Iām not any more brittle than the next diabetic. Dave is right in that control is never going to equal that of a non-diabeticās. Our blood sugars do fluctuate for wildly unknown reasons perhaps and sometimes for known ones we donāt understand - but thatās everyone. Those of us who at some point are saddled with ābrittleā often become those who feel like their efforts are in vain (read: me for over a decade). I personally donāt believe in brittle or labile diabetes.
I believe in what you say, Ann. The reason being that I am also brittle
like yourself. Itās not fun being Brittle, I can attest to that.
Maybe itās because our cells donāt absorb the insulin injected
in our bodyās the way others absorb the insulin. I believe we
have an extra component malfunctioning. Maybe we need a
Type 2 medication to make the Receptors more Responsive ?
I for one surely believe in the word, āBrittleā, as it relates to Diabetes.
Hi and thanks Melissa for your response and sharing this with me!
As I mentioned before I do not want to be caught up in the philosophy of brittleness or whatever everybody here choose to call it. As you can see, I am new to this site and did not know how wrong of me was to use the word brittle! It was just a post to find people who experience such drastic Bg deviations every dayā¦
Melissa, I can assure you that God has blessed me very much and I at no point think that my efforts are in vain. I work as hard as I do to see end results and those results help me to live a healthier longer life with my family. That is the bottom line.
Again being new at this site I was trying to find people with similar experiences to support each other. Which I am glad to say I already found someone that goes through exactly the same symptoms and experiences as I do and I just asked her about things that I saw on her profile that are working for her but not for me. I asked her how she achieves that, all thanks to my postings on this site. : Thank you Amy for understand where I am coming from!!!
Do not get me wrong thank you for taking the time and sharing your opinions with me, I truly appreciate. . Gosh, honestly if I new the short word to describe all what I experience everyday to make it precise and concise; I would have used it. Terminology just got on the driver seat on what should have been my need to find people who face day to day drastic changes on Bg though they keep a tight control.
My diabetic friends I have to emphasize that in a million years would I have imagined or expected to get bombarded/pounded by my use of the āterm brittleā?
I understand where you are coming from; not wanting to be boxed with that term but truly; I am not hooked on stereotyping people and for those who felt offended by my brittle reference I apologize but I will not apologize for trying to use the tools given to us by this website to reach others in my situation whatever the accepted term it might be; the result should be the same: to get to help and support each other.
Those who had known me for years know that I am very straight forward and I think that what does not break us, makes us stronger so I hope to be in other discussions with you guys in the future.
May you have a good night and a better tomorrow!
-Ann
Ann-
I apologize for jumping on you. After 37 years I have learned to live with my āconditionā. Diabetes to me is no different than brushing my teeth. I had one person jump on me months ago for having been diagnosed at the age of 2. I did not mean to jump on your āterminologyā.
Iāve lived an amazing life. Highs, lows and everything in between. Iāve educated MASSES in my travels and in my life. Including doctors and nurses along the way. We, as diabetics, have a rare advantage over the average ānon-diabeticā human. We are exposed to medical knowledge that most never have the privilege there of.
Iām here. If you need to chat, ask questions, discuss lifeās daily ups/downs, please feel free to reach out. My page does not do justice to what I am able to offer.
SIDE NOTE:
Amy - Thank you for the comment on my pageā¦ pneumonia is a major bummer! So glad to be on the mend from that!
My Drā¦a wonderful dr who himself has diabetes prefers labileā¦either wayā¦some of us depsite every effort made do not have well controlled BGāsā¦yes we keep tryingāand yes it is most probable that for some of us there are other things that the pancreas normally makes htat ours do not (Amalyn and Leptin come to mindābut they are not the only things besides insulin that can/do go awry.)
If the drs knew it all, there would not be so much trail and error to get it all to work right. It is very frustrating.
Ann, I was also teeād off by the presumption āA1C of 6.1 == great controlā. (A bunch of time below 50 mg/dL, killing millions of brain cells, combined with a bunch of time above 150, creating plaque and grunge in your arteries and body organs IS NOT GOOD CONTROL. Even though the resulting A1C test value would non-diabetic, in the 4ās.) Rather than a starting new discussion, letās just emphasize this:
This discussion is for those members NOW LIVING WITH with āBrittleā cases. What tactics do you use to get through the day? Others: Please DO NOT enter posts declaring that ābrittle diabetes does not existā, or āI donāt believe in itā, weāve heard that before.
ābrittleā == wild bG changes without explanation from food, insulin dosing, the menstrual cycle, illness, drugs, unusual activity, or unusual stress.
Well said. You announced that āIām TRULY brittleā, and you got a bunch of nasty replies from people saying that it doesnāt exist, because āI donāt have it.ā
Iām sorry that youāve got a lot of replies from āborn-againā types who used to be in that other 99%, recovered claimants of false brittleness. Iām glad that they have all taken control of their cases, with at least some success.
In particular, Dave, I think that your first reply (at the top) āā¦The reason why your bG flies up because you stuffed your face with 40 grams of uncounted carbsā is deeply offensive. Your follow-ups āIām living proof, so look no furtherā are even more uncalled for.
Maybe the reason why YOU āwouldnāt feel offendedā is because you the one with the shovel, slinging the mud (and doing it with pride). If you were on the receiving end, getting DUMPED ON, you might feel differently. Please DONāT reply here-- If you have to, take it to my personal page, or make me a āfriendā and weāll fight about it via email.
Havenāt any of you experts heard the phrase, āYour Diabetes May Varyā?
I too respect your impulse, Ann, to find others with similar experience and encourage you to persevere despite the negative reaction to the term. (I can see you are the sort of person who will do that!). Just as a side note, despite regretting the āshooting you downā aspect of the replies I also find it interesting. Iām currently reading a book about the history of diabetes treatment called āCheating Destinyā, Living with Diabetes, Americanās Biggest Epidemic by James S. Hirsch. I find it interesting enough Iām going to post it in a separate thread. But it speaks to these types of reactions. The history of our illness is fascinating with different opposing camps and philosophies and then other camps that react to those philosophies. We, the PWD are inevitably caught up in these ebbs and flows sometimes even without knowledge of what led to them. I think the history of ābrittle diabetesā is one of those. Someone coined the term to try and explain the case of diabetics whose blood sugar was unstable or labile despite all efforts at control. But it became a catch-all for both doctor irresponsibility and patient hopelessness. So many people so labeled resented the term and it fell out of fashion. Thereās probably more to it than that, but I think there is a lot of history to our emotional reactions to terms and ideas.
That having been said, I hope you persevere or start another thread and get back on track with the discussion of difficult to control blood sugars and unexplicable variations because itās a topic I think many struggle with.
Rickst29, please, no need for hostility. Itās a valid question to ask if those who have been labeled as brittle are mislabeled. I had doctors for years who claimed I must just have fluctuations they didnāt understand. Once I became better educated about my own diabetes, I became able to explain the variations in my control. I learned that thereās always a reason for my blood sugar even at its most temperamental.
No one would be responding here if they didnāt seek to help Ann feel welcome and supported. But, this is a discussion worth having. In any disease support forum, if someone claimed to have a worse kind or a less liveable form, Iām sure youād have people on either side of the argument debating it.
I am sure by many (outdated) medical definitions any T1 could be described as ābrittleā - I donāt personally like that label at all. To me it just demonstrates ignorance on behalf of the medpro that is using it. I think itās just as ignorant when a medpro asks me what my current BG is, and if itās a good #, they immediately assume āoh, youāre in good control thenā. Maybe I am, maybe Iām not, but ONE normal number certainly doesnāt signify that at all.
Every T1 has the potential for very wide and very quick fluctuations in BGā¦ thatās just how it isā¦ there are things we can do or use to make it easier to manage, but the potential always existsā¦ managing T1 is all about managing that variability.
I define ācontrolā as knowing what to do under a variety of situations to bring my BG back to normal rangesā¦ itās not so much having normal BG all the time, itās just knowing what to do to try to get there, and applying it in a way that is safe. I am realistic in my D managementā¦ I am not perfect, nor do I expect to be. Things happen, even under the best of circumstances.
I am currently doing a Dexcom trial, and itās somewhat eye opening for me. Since my #'s at one and two hours are always reasonably good, I figured I was doing fairly well. The Dexcom is showing me that Iām actually spiking MUCH higher after meals than I ever thought I wasā¦ itās kind of giving me some real-time feedback that maybe I need to make a better effort to pre-bolus than I have been.
about 20-30 minutes after eatingā¦ every meal now Iāve ended up well over 200. I do drop fairly steadily after that and am generally under 150 at an hour and under 120 at 2 hours, but I never really imagined I was getting āthatā high after eating. I try to pre-bolus by about 10-15 minutes, but I wonder if 30 minutes might work better.
Now, getting back to a few of the topics which Ann DID ask for. Hereās my situation, and what I do to try and handle it.
I have many occasions of inexplicable rising bG, but I do not have occurrences of inexplicable fallingbG. All of my āunpredictableā drop-offs occur as follow-up to the inexplicable increases-- when my liver quits pumping excessive, unwanted, unneeded glucose.
There are days when I need 3x of my normal daily dose (unrelated to any food, illness, other drugs, activity, blah-blah, as Iāve explained in other posts). The challenge is to accept this fact, and keep cranking in the insulin, even though it doesnāt make sense. 5 units every half hour, from +2 hours after the first correction for a bG jump which happened totally unrelated to food intake.
When I do such a correction, Iāll do it big-- at 175 lbs, Iāll do 15 units right off the bat, and if I donāt see any turnaround beginning to occur at +2 hours, Iāll stack on +5 units every half hour, indefinitely, until I begin to see at least some drop-off off in the rate of ācrazyā rise beginning to occur.
I have taken a break from my work to explain all this. I try to NEVER use pump-based basal adjustments. Like other men or women suffering from this kind of inexplicable rise, Iāll have pumped in as much as as 100 āextraā units of insulin, with with only the ālastā 20-30 units it turing out to have been a mistake. I watch the CGMS like a hawk, my MD wife present through the evening and night, with a few blood-based bG tests tests to calibrate the Dexcom at these extreme bG levels so that the the turn-around from high high bG can be seen. Of course, fingerstick bG to confirm the turnaround when Dexcxom āannouncesā it.
Iāll often have reached bG of 300+ before seeing any response to all of that extra āInsulin On Boardā. When the shape of the curve finally show a drop-off in the rise. When it does start, I backfill really big. Donāt get distracted from the need to keep backfilling! Typically, Iāll gobble 3 or 4 tabs when my bG finally reaches 140 or so (going downwards, plus a big lump of some slightly longer-acting bread. This should cause a bit of a spike, back above 150ā¦
If so, good! Carefully calculate the maximum possibly active IOB, from the all the corrections done at 4, 3, 2, and 1 hour previously. (This needs paper, itās not an in-your-head guess.)Watch the graph like a hawk, for the next downwards turnaround to begin. Backfill again, a bit more gently, using only fast-acting glucose. Donāt do too much at once, but try not to let yourself fall below about 110 mg/dL until all the ācorrection/adjustmentā IOB is gone. Yeah, you might be up until 3 AM, and youāll be stuffing your guts with back-fill. Itās not fun, but Iāve not reached bG 400+ in many years.
Insulin works slow, back-fill works fast. So, when bG starts flying UP with no explanation, my tactic is to ALWAYS āover-correctā aggressively, and back-fill when/if needed. Because, as Iāve explained, it nearly always turns out not to be āover-correctingā at all-- a calculated correction, using my normal correction factor, will not be remotely adequate for the overwhelming liver-dumps which I frequently experience.
Many people (e.g. me, and e.g. John Walsh, the famous CDE) have found Dexcom to be WAY quicker than Minimed for showing turnarounds into falling bG. (And at catching lows). Wearing two devices is more of a hassle than wearing one, of course, and the Sensors are way more expensive-- but maybe you should consider a ātrialā switch, running both at the same time, and seeing if Dex gives earlier warning of dangerous drop-offs in progress?