Just Call Me Your Highness

It’s happening again. The unexplained highs. Going to bed at 84, and waking up at 184 a few hours later — even after eating two buffalo burger patties with cheese and salad for dinner. WtF?Craft_crown

I MUST be fighting off a cold, although I don’t feel any symptoms. I’m using my PMS temp basal to offset this latest bout of SUS — Sudden Unexplained {blood sugar} Surge. But I am baffled and furious at the same time.

One runs through the mental checklist:

- Is the insulin too old? i.e. ineffective?
- Am I having “absorption problems” at my pump infusion site? (How do I confirm this without yanking it out?)
- Am I taking any other meds that might effect my BG levels?
- Am I fighting off some sort of infection? (my eyes were feeling kind of itchy!)
- Has my carb-counting simply gone to hell?

Too many variables!!

I check so often, and attempt to be so careful about tracking carbs (I do eat them, but in moderation, and with a lot of mathematics involved). This is just so unfair. THIS is what makes diabetes miserable for me personally, if you really want to know. I don’t spend a lot of time grieving over my “lost health” or dreading the long-term complications. I work pretty darn hard at “getting it right,” yet too much of the time, I just don’t. And that drives me crazy.

My endo says she worries about every minute her patients spend over 180 — the definition of hyperglycemia, and the point at which your body can start to release ketones into the blood, which is very bad news indeed. So I suppose I ought to be scared. But on the face of it, I’m just pissed off. Really!

Just to make myself smile, I insisted that my family call me “Your Highness” for a day. What the heck? I’ll never have a better excuse.

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40 Responses

  1. Marsha
    Marsha January 18, 2008 at 7:17 am | | Reply

    Dear Amy,
    I feel your frustration, I hate working so hard to achieve what seems to be impossible, staying within the “normal range”! This damn disease is a full time job with no vacation time or perks.

  2. Dina
    Dina January 18, 2008 at 7:24 am | | Reply

    I have to say, I don’t think our Endos understand how difficult it actually is for insulin dependent diabetics to maintain good control day to day, hour to hour. Time and again, I read blog entries about regular everyday spiking, chasing blood sugars and scary reactions from super compliant patients. Perfect control is not realistic. I myself try very hard to stay in the prescribed zone and it is SO FRUSTRATING to hear your doctor say that you need to do better. I mean, a badly-timed cup of coffee can send me into the 200s! It’s time to educate our medical care teams about what’s possible vs what’s prescribed so that the guilting can stop and we can work towards the best control we can manage!

  3. Mark
    Mark January 18, 2008 at 7:29 am | | Reply

    I spent my 4-day “vacation” in the hospital last week due to chest pains. This is someone who has an A1C of 6.1 etc, etc.

  4. Ali
    Ali January 18, 2008 at 7:41 am | | Reply

    Amy, you’re so right, that is exactly what’s so frustrating about diabetes, no matter how well you manage it at times it still seems to be completely random. I’ve had it for 24 years, diagnosed aged 4 and while I have good control, it still baffles me at times!

    I can’t help thinking that your endo must spend a lot of time worrying if she’s concerned everytime someone goes over 180. If you were habitually up there for days on end, I’d be worried too. It doesn’t sound like thats the case, so I’d take a pinch of (non BG affecting) salt with your endo’s advice – its perfect for a text book but not very helpful in the real world.

    I’ve only just discovered your site and its fantastic. Thanks so much for the effort you put into it.

    Ali

  5. Jo
    Jo January 18, 2008 at 8:21 am | | Reply

    I’m confused — does “every minute over 180″ cause so much damage that it’s eroding your years left on this planet? What if you’re only over 180 for say, a half hour? Does that take 10 years off your life? I was 200 the other day an hour after I ate, then was back under a 100 within the next hour — did I just loose 5 years of my life for that time period?

  6. Raymond
    Raymond January 18, 2008 at 8:59 am | | Reply

    Just found your blog … have you ever tried any of the supposedly natural supplements or have any recommendations?

  7. carol
    carol January 18, 2008 at 9:05 am | | Reply

    I understand your frustration. Been logging lately (after a long haitus), and watching my graph go bouncy, bouncy some days, as if the range of numbers I’d like to stay in is putting off some sort of repulsive magnetic field. One thing you might want to add to your list of possibilities is that your dinner was high in protein and low in carbs. In the absence of carbs, your body can convert some of that protein to glucose. That might help to explain the delayed highs.

  8. Stu Davidson
    Stu Davidson January 18, 2008 at 9:07 am | | Reply

    Oh do I feel your pain and frustration! However, I do not think you’re going to be a happy camper if you are a perfectionist Amy. Despite all of the hard work and consciousness on your behalf, our bodies don’t always react to the mathmatical rules, ratios, carbs, peak times, etc., etc. We do our best with the technology and medical information we have based on empirical data, but it’s not always a 100% fit.

    Take it easy on yourself (the more you stress about not being in control, the less you’ll be in control – Catch 22)and be glad that we now have accurate glucose meters, stable insulins, new methods of warding off death, and are not being starved to death (starving was one of the old theories to treat Diabetes Mellitus.)

  9. Titos
    Titos January 18, 2008 at 9:10 am | | Reply

    SUS in my experience always have a cause, to be found usually in the food intake (notwithstanding infections, absorption issues, insulin quality, BG meter accuracy, cleanliness of fingers during fingerstick, infusion set issues, rebounds from lows during sleep, stress and adrenalin releases / bad dreams, other hormonal effects & dawn phenomenon, late digestion of food from previous meals, temperature/season etc, etc), particularly in the effect of fats (and also proteins) being converted into carbs or delaying the digestion in such a way that a bolus of fast acting insulin does not cover the intake because of too early peak. The quantity of food also plays a role as it stimulates sugar release from the liver. Note also that in some cases indications on food re carbs, fats etc are not necessarily correct, particularly where sauces are concerned.
    .

  10. Anne
    Anne January 18, 2008 at 9:18 am | | Reply

    Amy,
    Are you eating more protein/fat at dinner? As others have suggested, it can make a difference especially longer after a meal.

    Sometimes when I get frustrated, I try to look things more as a scientist doing an interesting experiment, and try to take the emotion out of it. I’ve had diabetes 19 years, have had *plenty* of minutes over 180 and have no complications. I do eat well and exercise daily and I think that has played a huge role. Your A1c’s are better than mine ever have been as far as I can recall. :)

    Anne

  11. Chelle
    Chelle January 18, 2008 at 9:20 am | | Reply

    I hear your frustration! And I don’t want to pretend to have the solution, but I do have an idea…

    For myself (Type 1 since 1993), I have noticed some “weird” highs after super low-carb meals (e.g meat, cheese, and salad), and I’ve concluded that some of the protein is converting to sugar, but at a much slower rate than carbs digest. (That thought is courtesy of Dr. Bernstein.) It makes sense to me for this reason:

    *** If you don’t eat enough food, your body will break down muscle and/or fat for energy.
    *** The way the body uses energy is from sugar in the blood.
    *** So some of this broken-down muscle (protein) and/or fat must convert to sugar somewhere along the line.
    *** From that, I’m figuring that some of the protein we eat gets converted to glucose as well, though it takes much more protein (in terms of grams) to raise the blood sugar than it does carbs.

    So perhaps your highs are not immediately evident (as they would be with too many carbs & not enough insulin), but they’re delayed, because there’s not enough insulin for the protein. Does that make any sense? Traditionally-trained dietitians would call that idea crazy; but I’ve seen that pattern happen so many times, I can’t deny that something is going on here.

  12. Karen S.
    Karen S. January 18, 2008 at 9:36 am | | Reply

    “My endo says she worries about every minute her patients spend over 180″

    Ummm….r i g t. So, let’s get your Endo to try the whole “balancing” act. I have an A1C of 5.8 and I still see sugars over 180…I’m a diabetic for crying out loud it’s gonna happen. Rarely do I see a number in the 200′s but it still happens and I’m not so “shocked” b/c I am a type I diabetic…it’s more than possible!

    I don’t understand why your Endo would say that to a patient…maybe another doctor but a patient? I mean that just causes more stress. We’re already working our butts off trying to deal with this and maintain good blood sugars. Good Golly Geeze! Give us some encouragement for crying out loud.

    You are doing great Amy. I know it’s a pain in the @ss but remember it will get better and you will figure it out. I always say the way the wind blows can affect my blood sugar!

    Have a great weekend!
    ~Karen

  13. EmilyS
    EmilyS January 18, 2008 at 10:01 am | | Reply

    Urgh, I have the exact same problem! I have my alarm set to 2 a.m. to test my blood sugar, and about half the time I wake up about a hundred point higher than when I went to bed four hours earlier. But only some of the time, and I have not been able to find a pattern in my activity that would explain it. The only thing someone did suggest to me is the protein thing…nearly half of the protein you eat can be converted to carbohydrates over several hours after eating. I don’t know if that’s my problem, but I’m going to start keeping a record of my protein intake too so that I can figure this thing out.

  14. felix
    felix January 18, 2008 at 10:12 am | | Reply

    I agree with the other commenters that your endo has unrealistic expectations. At some point you have to accept that you cannot have perfect control over your levels (unless you want to live like a monk and have exactly the same food and exercise regimen every day).

  15. WC
    WC January 18, 2008 at 10:16 am | | Reply

    I woke up to a 27 at about 2am last night, and this morning was over 200. Hurray for overdoing it with the glucose tabs. When I get that low I just panic, and can’t stop eating. I told my wife when I went back to bed that I knew I overdid it and it would be super high in the morning. It’s actually a very comforting thought at times like that.

  16. Lyrehca
    Lyrehca January 18, 2008 at 10:26 am | | Reply

    Sounds like the high fat in your meal was the cause of the high–this happens to me frequently because I often eat high fat meals for dinner, sometimes without much carb (and your salad likely had a few carbs in it as well—three cups of lettuce is about 10 carbs, I believe.)

    Live and learn. And honestly, I wouldn’t stress over what your doc says that muc–as another poster wrote above, we’re diabetic, and highs happen. Just correct them, try to learn from the experience, and move on.

  17. christmasx2
    christmasx2 January 18, 2008 at 11:09 am | | Reply

    Amy, I find that whenever I eat beef, I get a very delayed surge in blood sugar levels. It may be the fat content of the beef that delays the rise of blood sugar levels, as I have the same reaction to Pizza and other high fat foods.

  18. AmyT
    AmyT January 18, 2008 at 12:00 pm | | Reply

    Actually Guys, I love my endo. And she may have said something more general, like worrying about “all the time” her patients spend over 180. But it stuck. Because I’m working so hard not to spend so much time there.

    Thanks for the tip on protein absorption, btw!

  19. Jayne
    Jayne January 18, 2008 at 2:39 pm | | Reply

    Hi Amy ~ Your site is a goldmine, indeed. And, I have a gem to share. Milk allergy has been effecting my sugars for a long time and I just found out. For me, it’s HUGE. I always had milk products for the protein and what I thought would be a stabilizing effect, but my sugars remained, most often, unpredictable. Now my sugars are most often in the normal range (going on 8 weeks) after years of being a “severely brittle type 1″ with elevating a1c’s. It was my general doc that had me cut milk because of an itchy mouth just recently. Little did I know it would improve my blood sugars! It has been genuinely, a very dramatic change. Of interest, milk allergy did not show on my skin tests at the allergist. However, Mayo clinic writes at it’s site, that milk allergy does not always show in skin testing.
    Perhaps, perhaps, perhaps others can be helped in this way too. Oh, wouldn’t that be loverly?

  20. Karen
    Karen January 18, 2008 at 3:28 pm | | Reply

    I have been pmsing for 2 weeks and the week before that my numbers were close to perfect then bam, I am lost for two weeks with bad numbers and how to fix them. Just when I figure it out a bit, then no more hormones and I am having big time lows, because takes me a few days to believe I can drop back my boluses again. Month after month you would think I would get it, but like with everything with diabetes, every day is different and it is not an exact science. What drives me crazy crazy is when my meal is so healthy and I get the same bad bgs as if I had a hamburger and fries, ahhhhh!!!!

  21. Tom
    Tom January 18, 2008 at 4:41 pm | | Reply

    I try to check in fairly frequently and usually find something of value(here comes the), “but” I really find it unprofessional of you to use the expression “Wtf” as often as you do. If you were in my home speaking like that in front of my children I ask you to stop, if you didn’t I wouldn’t invite you back.

  22. Adam Becker Sr
    Adam Becker Sr January 18, 2008 at 6:30 pm | | Reply

    I’m curious — what does ‘carbs in moderation’ work out to?

  23. baddecisionmaker
    baddecisionmaker January 18, 2008 at 7:18 pm | | Reply

    I’m right there with you (except my unexplained highs have been 280 and even 380, I wish they were only 180). I also am especially frustrated by the fact that the only way I can tell if I’m having pump absorbtion problems is to yank the site out or get really really high blood sugar and/or ketones. That sucks, there needs to be a better system that doesn’t involve me being the guinea pig.

    Also, since my SUS problem has been going on for soo long, and suddenly, inexplicably got better when I started on the first bottle of insulin from a new shipment, I’m toying with the idea that the whole last SHIPMENT of insulin, all 8 bottles, were ineffective. They arrived in early Sept. during a late summer heat wave, and the mail-order pharmacy said it was over a week from the time they left the warehouse til they arrived at my house.

    Do you use a mail order pharmacy? Anyone else worry about this? I’m thinking about switching my prescription to the local pharmacy even though it will cost significantly more.

  24. me
    me January 18, 2008 at 7:23 pm | | Reply

    As a non-diabetic, you might be interested in my little cgms experiment. I am a generally healthy male, 42 yrs old, 170lbs, 5’9″, and very curious. I’m not as active as I used to be. So, that is all a lead-in to the fact that even pwd without diabetes have excursions of high blood sugars relatively speaking. My high so far (lots of meter calibrations to for verification) is 167 with lots of bg’s in the 150s. I can stay above 130 for several hours and often don’t drop below 100 post meal for 4 to 5 hours. I have also experienced unexplained lows in the 50s in the middle of the night. What does this mean? I have no idea. However, my A1c was 5.3 indicating that I have a higher risk for heart attack than I would like. My next episode of intensive monitoring is coming up soon as my plan is to increase my activity levels and a focus on better health. I’ll check back and let you know what that looks like. I think the message here is that we all have unexplained highs and lows and its what we do about them over the long haul that makes the difference.

  25. Cheryl Harrell
    Cheryl Harrell January 19, 2008 at 2:22 am | | Reply

    I am a T2 diabetic married to a T1 diabetic. Your blog has some informative stuff. I can feel your frustration. There have been somes when I ate healthy stuff that shouldn’t have raised me & yet when I tested I was 300. Yikes. Good luck with your diabetes

  26. Auntly H
    Auntly H January 19, 2008 at 4:26 am | | Reply

    “too many variables”
    I typed exactly that in an email to a friend (and my best D-support) just yesterday. I often wonder what I could accomplish if so many of my brain cells weren’t busy juggling those D variables.

  27. Sean Kelley
    Sean Kelley January 19, 2008 at 8:27 am | | Reply

    Nothing more frustrating than feeding your body the right things and doing the right things and then getting unexpected results. My blood sugar spikes at the strangest times, then will bottom out without explanation. Hormones, stress, the cycle of the moon—who knows why it goes wonky!

    I went through one day last week checking my blood sugar 10 times, just out of paranoia. Costly and bloody.

    Good luck and great blog.

    Sean

  28. Karen
    Karen January 19, 2008 at 12:23 pm | | Reply

    Me,

    You are seeing numbers like that and you are not a diabetic?

    Why are you testing and how do you know what to do?

    You are using the CGM??

    I am very curious and hope you respond.

  29. Sarah
    Sarah January 19, 2008 at 5:41 pm | | Reply

    Amy, as a Type 1 diabetic, you will NEVER be able to do the work of a pancreas. Period. You will always have “unexplained” highs and lows. Always. The sooner your doctor understands that you have Type 1 diabetes and not Type 2, the less stress and guilt you will feel. If I were you, I’d make HER feel guilty about not being able to cure you and leaving you with such crude tools in place of a pancreas.

    Second, protein raises blood sugar. In a Type 2 who has insulin and resistance but still makes insulin, this is not a problem. For a Type 1 diabetic, who makes NO insulin, the slow conversion of protein to glucose (some studies think as much as 70%) will result in a blood sugar rise or spike hours later. Simple as that. Everything you eat will affect your blood sugar as a Type 1.

    For me, protein causes severe highs. I take insulin for protein just as a do for carbs. I use my extended bolus. Some people convert more protein to glucose than others.

  30. jadesr
    jadesr January 20, 2008 at 2:17 am | | Reply

    I am frustrated, too. No matter what I do, I wake up at 250. Eat a whole cake? 250. Eat nothing? 250. Shoot tons of insulin? Nighttime low, then 250 in the morning. Shoot nothing? 250.
    Apparently, my body has decided I must wake up at 250. I don’t know what to do about this.
    Has anyone else had a simillar experience? What did you do to combat it?

  31. jadesr
    jadesr January 20, 2008 at 2:19 am | | Reply

    And, thank you Sarah. That is exactly how I feel.

  32. Jan
    Jan January 20, 2008 at 10:59 am | | Reply

    SUS, great post. Sudden Unexpected Surges are only acknowledged by our endo regarding growth spurts. But it is good to have a warning that this is, indeed, possible. We have had six to eight hour surges sometimes of high blood sugars that won’t budge with corrections, but need a hefty 50 percent temp basal increase to bring them down. I am always looking for a reason. Would not be high protein, as she will not eat a lot of protein or meat. Bubbles in the tubing could be hidden somewhere. However, I also noticed we might have a SUS after a few days of couch potato TV computer behavior. Which is to be expected. We also have had a few instances where we put her to bed on a perfect night time basal and between our last 2am check and 6am she has gone into the 200s. Since that is the one time we can’t check it’s frustrating. We now have a cgms which helps a lot but there are some nights even that fails us because we sleep through the alarms.

  33. Linda B.
    Linda B. January 20, 2008 at 8:37 pm | | Reply

    First off I would just like to tell Tom who posted above about the WTF, Aren’t there more important things going on in your diabetic world than concern over 3 letters that I am sure you have uttered at least once in your lifetime? The highs the lows, the counting the injections, the food the supplies, etc. you do what you are supposed to do and something goes wrong I would utter the same phrase, It’s getting it off your chest and voicing your frustration. I am positive that Amy is not standing in the middle of the room with her kids around shouting WTF although I must say a good vent in private or in the shower can help relieve the stress of all the junk we all deal with everyday.
    Now that I have that off my chest I would like ro say that over the past 12 years Diabetic for 30) I have found thet certain foods do shoot me up there. I also have found that my gastroparesis delays my absorption of food quite a bit. I do not know if your celiac has this same sort of affect. I do know that stuff happens and we cannot control what are body does with the food we consume once we swallow it. I would not commence on a total freak out yet. As with everything there are a lot of variables we need to deal with. Stress, work, meds, the thought of running out of supplies, kids, husbands, other family things, your blog, d-life articles, writing books, there is a lot going on in your life. My advice, keep a check on the sugar, try to meditate, pray, stick a pin in a doll!!, whatever you do to destress. Stress is my biggest downfall, well that and carrot cake!! But anyway I find when I take the time to RELAX, I am then able to focus more clearly on what the culprit might be. I have found out that the less stress I have the less my gastroparesis seems to be, thus my food absorption tends to be a little better.
    Good Luck and take a little you time, you deserve it!!!

  34. AmyT
    AmyT January 20, 2008 at 10:13 pm | | Reply

    Thanks for that, Linda — all of it.

    I wanted to remind Tom that this site is, after all, a personal web property, akin if anything to MY living room — a place where we can be completely candid “among friends.”

    Besides, using the initials is a nice way of disguising what I really feel like shouting, I think :0

  35. Bernard Farrell
    Bernard Farrell January 21, 2008 at 6:29 am | | Reply

    Amy

    I feel your frustration. What you’re describing is pretty much an everyday experience with me – even with a CGMS.

    I’m curious about your endo’s talk about being over 180. It makes this sounds horrible, when for someone with type 1 you’re probably going be over 180 at some stage on many days. What is it with endo’s and setting unrealistic expectations? I think there are better ways to express the same idea.

  36. ken fried
    ken fried January 21, 2008 at 8:14 pm | | Reply

    I’m 24 and have had diabetes since I was one year old. I have the same problem with the unexplainable highs yet it never phases me. 3 months ago I got an insulin pump and things have been going great but I still have this sort of apathy towards highs. For instance it’s not uncommon for my blood to go into the 200′s, 300′s and sometimes 400′s (much less frequently since the insulin pump). Hopefully one day I’ll start to care, and realize that a number above 120 isn’t good. Unfortunately I’ve lived my entire life with always seeing numbers above 120, it’s so hard to change my perspective at this age.
    Ken

  37. Dan Fahey
    Dan Fahey January 22, 2008 at 7:47 am | | Reply

    The comment by Ali is right on.
    It’s helpful to know the numbers above which one starts to get in trouble, othewise we wouldn’t know when to react. However the issue isn’t so much IF we’re over a particular number but how often, and for how long.
    Very frequent testing allows for the kind of feedback that permits us to “fix” the problem [until the next time].
    I probably test once per waking hour, so I feel pretty confident that I’m heading off problems before they go too far.
    Even so, I’d love to see the CGM become accurate enough so that the every 5 minute routine can be counted on [since it's an automatic]

  38. Dan Fahey
    Dan Fahey January 22, 2008 at 8:43 am | | Reply

    I was reading Sarah’s comments about counting protein and fat calories.
    I don’t yet use a pump but I gather that you mostly count carb calories to determine bolus doses.
    I don’t understand that inasmuch as using insulin/needles I’m always estimating the whole package of calories [which is I think Sarah's point].
    Taking protein along with carbs helps to lengthen the time over which carbs get assimilated [a good thing].
    How DO insulin pumpers make that calculation?

  39. d2
    d2 January 22, 2008 at 6:26 pm | | Reply

    Amy
    I hear and read your pain and challenges. The size and the volumn of the data is large. With 10 blood glucose reading a day time 30 days the result is 300 readings with a date and time. It would take a person 5 minutes to “look at” all the readings. It is interesting that this is a more recent item. There was a time when some of us were faced with dealing with NO numbers. It was a real challenge when one attempts to define a “feeling”. I would suggest that you examine the list of the specifics that you review to respond to the unplanned movement in glucose levels. All are external factors with no indication as to what is taking place within the body. What is the brain, kidney, liver, etc and their specific interactions of biochemical reactions within the blood stream of the body? What has helped me is to: Learn from yesterday, live for today and hope for tomorrow. When many individual photos (blood glucose readings) are reviewed in a quick pattern, they become a moving picture. It becomes a movie of the transport of glucose through the body for usage, storage, retrival, processing and removal. Does one need to add a bolus or consume some juice to bring a glucose level back to a normal range. Hope this helps.

    D2

  40. t1d
    t1d April 18, 2008 at 11:33 am | | Reply

    Karen
    I thought the reason protein causes sugar highs was because the amino acids in meat (arginine? I think) cause the alpha cells of the pancreas to release glucagon, which tells the liver to let go of stored sugar.
    I think sugar accounts for just 4% of the mass of a muscle, so there is some sugar in all meat.
    Arginine can cause beta cells to release insulin, too, but if you don’t have any you only get a spike of glucagon.

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