I had that same test done at the begging of the year it showed some slowness but nothing out of the normal ranges. So, there went the theory of why the unexplained changes!!!
I keep doing the best I can every single day, one day at a time and with many blessings I will keep living an amazing life!!!
Thanks soooo much for your encouraging words of support and sharing your experiences with me!!!
Have a blessed day!
-Ann
Tom, Iām brand new, not only here at tudiabetes, but to discussions with other diabetics. So there may be a lot Iām unfamiliar with. Iāve been T1 for 16 years, most of which I experienced wild, inexplicable fluctuations. Like you I experimented a lot trying to isolate variables.
Iām wondering if youāve read Dr. Bernsteinās Diabetes Solution, including chapter 22 on gastroparesis.
Iām considered brittle also. I try as hard as I can to stay within range, but I still experience wide swings in my blood sugar levels. Iām wearing a CGM, which seems to be helping.
Actually I met him about 3 years ago when I was hospitalized for DKA. Frankly, I knew nothing about him at the time, though we had interesting chats about the founding of the JDRF. He is really a very nice man. If Iām not mistaken, he is an advocate of a low carb diet, correct? It makes sense on an intuitive basis. I think it might be worth investigating.
Gastroparesis itself is a pain in the neck. It seems to be susceptible to control issues, along with being impacted by what I am eating. Then factor in the duration of the meal, the glycemic index and you can see why I get annoyed when doctors say āyou need to get tighter control.ā I think Iāve finally found a good one, and hopefully will stay associated with her for a few years.
Hi Jan and thanks sooo much for sharing your story and experiences with an inexplicable out whack bgs!
I am glad to say; I am very healthy too. Heart, circulatory system, stomach, eyes, etc., are in great shape. My left kidney filtrates a little but it has been like that for years; the endo prescribed Cozar 25mg to prevent further damage. The kidney damage was developed during my younger years when I used to be rebellious about my condition and did not take of care myself. I have high HDL levels too. ļ
Glucagon is our best friend in our home, never live home without it! We do not trust the emergency room that much. Last time there caused by a low bg; after 2 hrs with dextrose IV, had to call the nurses/doctor due to my high bg of 600. My hubby kept asking for them to stop the dextro but as you may know; they never listen to those who know better: us. Needless to say; they wanted to put me in ICU due to high bg, hubby and I keep working with the pump and regular IV(hydrate) and after 4 hrs I was in a ok range. We asked to be released from the ER at our own risk. I was OK after that. That is kind of my experience with ERās. ļ
No luck with Medtronic CGM either though the pump has been a blessing. I just try to test as much as possible and watch what I eat. I take supplements too.
I hope to keep in tough with you Jan.
Again, thanks for your message and have a blessed day!
-Ann
Hi Dave!
As I can remember the first person was my pediatric Endo when I was 16 yrs old.
Then again at 24 yrs when I had to be hospitalized for a mayor DKA, 900 BG due to a ER that forgot to live orders to unhook me from the dextro IV. I was transfer to another hospital by ambulance where I spent 1 week in ICU, 2 months in the hospital. At that time the Hospital policy was I needed 3 BG readings in a row to be within āthe normalā range to be released. In that controlled environment with around the clock attention by nurses and doctors, diets, medication, constant bg monitoring 24 hrs a day, etcā¦ 5 days passed and they could not achieve the 3 bg readings. I could not stand staying there any longer; so I made the decision to check out myself. And that was the next time I was called brittle.
Have a blessed day!
-Ann
(Sorry, I lost track of this thread because I didnāt click the āFOLLOWā link, part of being a newb.)
Have you ever had an R-R interval test? Performed on an ECG, it measures damage to the vagus nerve, is an easy, quantitative measure of damage and indicator of gastroparesis. Hereās a money quote from Dr. Bernstein ā totally relevant to a discussion of ābrittleā diabetes:
āā¦the digestive disorder of gastroparesis, which I mentioned above, can be and frequently is one of the most difficult barriers to blood sugar normalization, and can even make blood sugar control virtually impossible in some people who require insulin.ā
But the blood sugar control that Dr. Bernsteinās patients achieve have shown this damage to be REVERSIBLE.
āI consider this test (the R-R interval test) an important, reproducible, quantitative measure of an important diabetic complication and perform it onall of my new patients before blood sugars have been stabilized. I repeat it about every eighteen months, for several reasons. Itās a very good index of how, with aggressive blood sugar control, neurologic complications can and do reverse, and it gives both patient and doctor good, concrete evidence of the success of treatment, and encouragement to keep it up.
ā¦
A low heart rate variability on the initial test [what the R-R interval measures - Cash] can be a good indicator that the patient is likely to have a problem with delayed stomach-emptying. It can also give the doctor clues as to causes of other problems that a patient may be experiencing ā sexual dysfunction, fainting upon standing when arising from bed, and so on.ā
I think a reasonable expectation/goal is readings that reflect time spent : 5% low but aware of it, 75% normal, and 25% high. I think never passing out due to lowness is good control given an A1c less than 7.
I do not think that a type 1 w/ an A1c less than 6, who passes out at least once monthly, who checks and injects 12 times per day, and is underweight has good control. I think that person has an eating disorder, that is OUT of control.
The āmoderation in all thingsā is trickyāand realistic expectations. Having this thing is like having a 4 year oldāyour really need to keep track of them, feed them often, and do alot of well-child checkups. Having a pump is like having an infantāit takes even more time and trouble!
Tell me about it! =D
Have a good day tomorrow!
-Ann
Iām afraid that I havenāt had that one. Sadly, the chances are slim and none that I can get it done at my request. I donāt have insurance and get all my treatment from the Veterans Administration. They generally do not indulge patient suggestions (as an institution) though there are some doctors who work there on a consulting basis who take perverse pleasure in pushing the envelope. I currently have one of those, so when I see her again I will give it a try.
For what it is worth, Iāve had various vagus nerve issues - some transient and others (like diabetic dysmotility of the digestive tract as well as orthostatic hypotension) are more or less permanent.
Thanks for the heads up.
Guilty as charged, ā40 grams of uncounted carbsā corresponds to my own carb insulin ratio. Of course, the exact quote is,
"Other days I can jump 100 points in under 30 minutes. The cause? ME. eating the wrong things."I certainly MUST apologize to you for my unfair extension of your statement into a particular amount of food, and even worse, my totally fraudulent "stuffed your face" invention, creating added nastiness which YOU never put there.
I see that you do not protest the other quotation (because you canāt.) The phrase declaring that Itās a term I abhor because it doesnāt really convey the fact that no ONE is really ābrittleā in the old senseā¦ is certainly present as well, although I didnāt discuss it. First I was abhored, then a new post came back to pile on, accusing me of ādoing a disservice to oneselfā in tortured, neo-Elizabethan Englishā¦
I feel that thereās more than one despicable post in this Thread. NOT this new one of yours, perfectly appropriate in asking STRONGLY AND FAIRLY for an apology from my utterly fraudulent āquotationā. But the multiple predecessors which provoked me to attack back with all the viciousness I could muster, first saying that my case doesnāt exist, and then coming back to insult me a second time, ālook no furtherā, when in fact I often need 200+ units of correction on days without illness or changes in drug therapy (while eating less than 30 grams of carbs total, over the entire period of the problem.) Thatās 3x my total daily dose, over 8x my āstandardā basal.
I ignored the first post, but absolutely flew off the handle when you came back, even AFTER preceding shouting among others, to āpile onā again. Did you really have to?
Anyway, I apologize for MY post, and agree with you that the fraudulent first āquotationā was a horrid, truly BAD thing to do. Feel free to get me banned, if this sincere apology is not sufficient.
i get itā¦ i am ābrittleā and come from a long line of ābrittle diabeticsā i agree with some of the above though, that the term is often used as a cop out. i can have the same bg two mornings in a row, same time same stress and same breakfastā¦ all equalā¦ and one will send me to the moon, and the next will leave me drinking juiceā¦ i get it, i understand your question as well about trading ideas of how to deal with it, but i am fresh outā¦ i just do the best i can, and it sounds as though you are out ahead of me on that one.
To get it evened-out really well, youāll probably need to consider the specific foods a bit more carefully too. After you find a CGMS system which actually works with good reliability, (hoping, hoping hoping, !!!) thereās four different kinds of mealtime adjustments you can make to help levels stay consistent (not just one):
#1, Bolus lead-time, is already well-discussed by other posts.
#2, The Overall glycemic index of the food in the meal is a big deal. If your favorite breakfast consists of full-sized Raisin Bran and Orange Juice servings, for example, the situation is durn near hopeless: Most anything which you try to āhandleā such a strong peak will cause Hypos either before or after, because no existing insulin formula can both leap up and then go away fast enough to match such a carb-heavy meal. If you absolutely love that stuff, and wonāt (or CANāT, for other health reasons) add fat and protein in order to slow it down, then the ābestā of many poor choices is to probably to take the big dose and āback-fillā like crazy for the following hours, during which the insulin continues working stronglyā¦ but such a meal is pretty much impossible to ābalanceā by mere timing tricks, youāll have to nibble another āfix-upā meal/snack later. Which could be a danger, if your work can get wild and lead you into un-tested periods while IOB is still active.
#3 Best tool? Iāll say, although some other might disagree, āMix it upā with fat and protein to match the insulin curve. I personally do not like faked Basal levels which arenāt really doing āBasalā work at all, but are really cranked up to do sort of āBolus-likeā tricks while youāre still asleep, getting ready for a carb-heavy meal to follow. (I think that Basal levels should be set by totally skipping any meal or snack which would normally be affecting those particular hours, but my āthinkingā is NOT THAT OF A MEDICALLY QUALIFIED PROFESSIONAL.)
#4 Very closely related: If you eat a mixed meal, pay very close attention to what youāre eating first. High-Sugar drinking before the peanut butter which is intended to moderate it? That probably wonāt work very well, most people need to eat the āmoderatingā low-Glycemic-Index Foods first. (Hereās a great example: Dry red wine first, THEN the āempty caloriesā baked potato much later. (If you gotta have one.) Butter or Sour Cream all over the potato and eaten at the same time, usually doesnāt work as well as eating a smaller serving of appropriate āModeratorā food well before the carb-heavy item even begins to be consumed.
And of course, if youāve moderated āTOO muchā, as low-carb people always do, ON PURPOSE, then youāll need to use an extended basal to stretch out the fast-acting insulin activity. But this group of posts isnāt about that problem, itās about the insulin being too SLOW to handle a rapid peak from teh high-GI foods. Smaller servings of the āguiltyā high-GI foods, or āmoderatingā those items with preceding protein/fat/alcohol, dosing high and āback-fillingā later, or doing the already-discussed pre-bolus trick are your only options.
Of these, putting yourself into a āback-fillā requirement from overdosing, or digging a hole which wants to get āwiderā, even as youāre eating as fast as you can, from having pushed the pre-bolus timing just a bit to farā¦ these are both risks which the other options donāt have My choice is to both modify the meal for lower GI and smaller proportion of total carb calries, AND (if itās still going to be relatively āhigh-carbā to start the meal with the lower-carb āmoderatingā food items if overall meal will be carb heavy.
I never pre-bolus by more than 15 minutes, because it can get quite difficult to dig out of those āinsulin overwhelming the food!ā holes. If you think people look at you funny now, wellā¦ Your co-workers get really puzzled when youāre lunging for your SUGAR TABS while the conference table has 50 donuts and bagels lying there āfree for the takingā. And the poor Restaurant, when the waiter has already brought you your food but youāre lunging at tubes and bottles of ācandyā instead of the stuff their cook has just worked so hard to make. And youāre shaking and sweating like a dying leaf in a late October rainstormā¦
Before the "GI concept was invented, I did that a lot. Not good. All around, itās not good. (Just IMO, of course.) Use all your tools, not just pre-Bolus lead time.
A quick review before my reply: When it happens, my blood glucose becomes way out of normal range quickly, but even then , my liver keeps pumping out more glucose. For normal diabetics, this misbehavior only happens as Rebound from one (or more) Hypos, and itās not terribly severe: After the Hypo, YOUR T1 livers often do a āReboundā over-correction which targets an erronious bG of 400 mg/dL, or maybe 600 mg/dL, and you have to correct your way back into proper range from an āerrorā like that; but when MINE goes crazy, and itās not after a Hypo, it pumps out enough glucose to push me past 5000 mg/dL. (My correction is 1 unit per 25mg/dL; but a āliver gone wildā episode can need well over 200 extra units. Just do the mathā¦)
Almost immediately, my bG goes radically out of ānormal rangeā-- but some busted up-regulation hormone, from somewhere, keeps calling for āmore glucose, yes, I said MORE MORE GLUCOSEā¦ā Or the other possibility, my liver, without hormone input from anywhere outside, just takes off on itās own, on purely internal frenzy of glucose production, driven form nowhere else.
My insurance doesnāt pay for Research. Because the CNS problem (Dumb-as-a-brick STUPID at relatively high bG) developed at the same time, and I suspect that itās hormone related AND that it goes back past the Endocrine system and into the Hypothalmus, This is the āmaster glandā, the parent of both the Endocrine system (via the Pituitary), and many aspects of the CNS system. (Including just about everything ābrain to bodyā, like pulse rate, heart rate, etc.) My āDumb-as-a-brick-STUPIDā feels more like a breakdown of Sleep versus Awake than anything else, so my first inclination is to blame my Hypothalmus. I could be wrong, of course.
(My wife sees ānew issuesā during my sleep which concern her a lot, in these last few years, and weāll probably schedule a sleep study soon. Nothing physical has been seen via MRI or PET, yet, thank goodnessā¦ but all my MDās agree that something very strange is happening, they just donāt have a complete āsmoking gunā to point directly at the Hypothalmus without the sleep study in place.
One of my specialists did recommend that I try adding on a rather famous anti-narcoleptic agent to attack other aspects of mental function, and that drug gained about 10 mg/dL back on the ādumb as a brickā problem (yeah, it got as bad as 70 mg/dL before starting that drug). Although he recommended it to address for āoff-labelā issues, it might very well be treating the FDA-approved aspects of FDA sleep/versus wake trouble too, although my specific sleep disorder(s) have not yet been documented in an official medical record by a SLEEP specialist conducting a full overnight study.
Yeah itās grim. But life is a fatal game, just play the cards which your were dealt, as best as you can, and enjoy them game. Iāll TRY harder to remember being nice to ALL the other players, too 
gadzooks. Iāll happily accept a friend request to take it off-line, because I feel that you exactly HAVE exactly gone over it ālike a legal beagleā, totally ignoring the very detailed āliver gone wild, with weird and new brain damageā posts Iāve made elsewhere in this thread while re-re-re emphasizing that Iāve insulted you with my fraudulent quote.
āLittle else to be discussed?ā I feel like you keep kicking my own poor arse over and over. My bG keep pushes itself way past 5000 mg/dL, for no obvious reason (just READ and do the math). I say ābrittleā, capiche? You got more to say, take it off-line. NOW.
Lost, via a too-slow edit, were my special warnings about pre-loading with alcohol to serve as a spike āmoderatorā. Itās activity is extremely powerful, so the timing must be done with great care (just like pre-Bolus timing). But most drinks (including even ādryā wine) have a good deal of sugar in them, requiring some calculation; and alcohol piles on a new CNS āriskā which the other glucose management tools donāt haveā
Drunkeness. Even the first drink compromises your awareness, decision making, and physical control. Going Hypo creates exactly the same effects (in a different way), so they stack on each other: your risks of āhypo-relatedā problems are much greater than you would otherwise have from the bG alone; and your risks of āalcohol-relatedā problems are much greater than your blood-alcohol level would otherwise create.
Donāt become a statistic, this is (by far!) the most dangerous of your ātoolsā. Be CAREFUL. Hereās what I do:
Although I do have a glass of wine at nearly every evening restaurant meal, I never drive back (to the office, or to home) from an event or meal where I had a drinkā¦ not even with CGMS on board, and no matter how high my bG measures at the car. (Yes, a fingerstick measurement is always taken, while Iām sitting in a passenger seat.)
The āget together after workā event? I always just tip generously for water, I will NOT drive or wait for a ride with beer on board. (If DW is present, then she drives and I will have one, just like dinner out.)
But a second drink? Yikes, even I never, EVER do that, and Iām about as OCD-aware of my bG as anyone youāll ever meet.
Thatās great hypo-awareness, and youāve still got a nice margin (well over 10 points) between feeling the first signs, and later becoming so ādumb as brickā as to be incapable of doing anything (or worse, violently fighting your helpers). Your inclination to eat too much at āhigh 40āsā is a bit of a problem, but you do still have the sense do something in the right direction. Thatās good, and a bit āluckyā, but also great credit to your management success.
If I reach high 40s these days, Iām long since horizontal, with the decision skills and behavior of a large garden rock. Iām also likely to fight my helpers and hit my head on the floor, HARD, by accident if they didnāt remember to get a bunch of pillow underneath my head FIRST ā¦sadā¦
Wowā¦ I thought my rebound highs were nasty, but thatās just unreal 
Iām sorry your body does that to you!
The key word there is āunrealā. :-/
Yeah. Itās definitely not Alpha-cell-generated Glucagon from the Pancreas (a blood sample was sent to a University to test for that.)