We all know its totally unrealistic to regulate glucose levels in the normal 80 pre-120 post non diabetic fashion the majority of the time. In fact I’d bet most of us are rarely in that range despite good management and efforts. Some diabetics feel awful with lows yet not too many I’ve corresponded notice elevated levels unless they are really high. Unfortunately for me my body just can’t seem to handle either the lows or even slightly elevated sugars. I took a morning sugar the other morning and was 106 after eating a few pieces of melon from a slightly morning low and was irritable beyond belief. I quickly dosed some Humalog and after about 30 min I started feeling a little better. I really feel doomed. A good percentage of the day I feel awful even sometimes in somewhat normal range levels. Every once in a while I feel fantastic (not sure why?) but its rare. I just don’t no where to turn or who to speak to. With the sensitivity I have I doubt there is anything anyone can do. It’s kind of like saying I can only feel comfortable at exactly 75 degrees but 74 way is too cold and 76 is much too hot. I think for me the key glucose level is 90 and that even 100 could be too high. What’s strange is as a Kid I just don’t remember feeling this way. I’m getting to the point where I can rarely go out in public without major anxiety. Overall my health after 35 years of diabetes is relatively good but my quality of life is completely ruined. Unless one of these potential treatments gets too commercialization I have doubts I’m going to make it.
My advice, is that it’s very possible to feel out of whack (suspecting a high or a low) and then you test and discover that you’re not out of whack.
I think maybe we get so accustomed to all of our problems being blamed on bg’s, that we think any slight unease or funny feeling must have something to do with bg.
In your example (106 after eating to correct a hypo) maybe the problem wasn’t really the 106 being too high for you, but feeling out of whack after the hypo, or maybe something having nothing to do with bg’s at all?
Usually I can just bounce back from a hypo but sometimes there’s a lingering unease even after my bg is back in range.
I’m not saying the anxiety isn’t there - I’ve experienced it too - just that after a certain point in fine-tuning control (and certainly I can’t tell you 95 is any different for me than 105 in terms of absolute bg control) that it really is an anxiety issue, and not a bg control issue. e.g. in my case I don’t think more bg corrections are the answer to the anxiety. In fact maybe backing off just a little in terms of bg regulation effort may help emotionally. That some technologies like a CGM might be reassuring emotionally and that has a higher value than any medical improvement they might bring. Just thoughts off the top of my head, because I do identify with your anxieties. (Even though I’m a “newbie” compared to you, with only 29 years of T1!)
Of course it happens the other way around too: I was in the 290’s-350’s all last night but felt just fine (and my bg’s did eventually come back down after many many correction doses.)
Your real variation within one day is surely greater than these very narrow margins. Your A1c is an indicator that you might experience greater fluctuations than you might expect. I would recommend to ask your endo for one or two weeks of CGMS monitoring - even out of the pocket if necessary. This way you will now for sure what makes you feel bad…and exchange your glucose meter to make sure your numbers are correct.
Another example is I woke up yesterday feeling awful/buzzy/irritable and was 165 yet about 2 months back I woke up feeling absolutely fine and would have bet I was in that 85 to 95 range and to my shock I was around 175 from what I remember. I think part of the problem above and beyond my sensitivity is the fact that our bodies don’t have the opportunity to ever get used to any level because we are all over the map. I’ve had even some experiences eating sugar free hard candy with no carbs at all and felt what seemed like a spike after eating it. I went from feeling fine to irritable. Its horrible. To me its like going through chemotherapy everyday. What also kills me is the medical industry sees Hypoglycemia as the main problem with diabetes and I am not saying it isn’t a big problem for some people but they never seem to make a big deal out of how difficult it is to have a quality of life living with diabetes. My guess is the people that don’t feel the sugar swings are the only ones getting away with still having a decent quality of life.
I have to have my thyroid test re-done …seem to be going through similar stuff as you Gary …I don’t think think it is "always " the food we consume or not consume .
I really don’t know what to think anymore. It’s baffling to me how often I feel awful. Though I have no idea what goes on in some ones mind that is Bi-polar the sugar swings (at least I think thats what is causing it) cause major Bi-Polar like symptoms. There is clearly physical distress along with emotional. The elevated sugars most of the time have me bouncing off the walls. I don’t know if I’ve ever had my Thyroid checked but that sounds like a good idea. My dad is also Insulin dependent but got it as an adult. He rarely feels anything unless he gets real low. I’ve met a few others that have claimed the same thing. Meanwhile as we speak today there is nothing that I am aware of that can be done for my problem. I am praying to god Smart Insulin goes into human trials soon. I need a light at the end of the tunnel to keep wanting to fight.
Hang in there, Gary, don’t lose it! I too am going through a period where I wonder why I should keep up with the ritual: wake up, test, take a pill (thyroid), go back to bed, wake up, take more pills (antidepressants), test, dose, eat breakfast, test 2 hours later, adjust, go low, test, eat, test, adjust, eat, dose, eat lunch, take vitamins, test 2 hours later, go low, test, eat, nap, wake up, test, adjust, make dinner, test, eat dinner, test 2 hours later, adjust, have a snack, test, go to bed. Repeat tomorrow. I’m so tired. Something needs to change. My A1C is slowly climbing from 5.9 last year to 6.3 now. I can’t lose weight, can’t work full time, can’t even find a job part time. #$%^&! You aren’t alone in your struggles, Gary. I’ve had T1 for over 45 years, and it’s getting old. I recently did a Real Age test and my body is actually 65, but I’m 50! No wonder I’m tired…remember though, don’t go by how you feel when it comes to eating. There very possibly could be something else going on, maybe thyroid, or depression, both common with long-term diabetics. Get checked out!
Yeah if I were the poster child for type 1 diabetes there would be a big frown with bold print suggesting your life is ruined if you develope this. The people in charge of airing those meter commercials of people on the go, smiling should be hung.
You know, I’ve gone through the “the ritual is taking up my whole life” phase several times in my life. I did come out the other side of the phase.
When I was in the phase the problems of bg control and shots and all the pills and dealing with hypos etc. seemed absolutely overwhelming and occasionally impossible. And it seemed very hard to impossible, to do anything else.other than the ritual.
When I came out the other side, yeah the ritual was still there, but I could see that life was more than that ritual.
I’ve gone through that kind of dark phase several times, but I just want to reassure you guys, there is light at the end of the tunnel! We are much more than our bg’s and A1C’s. Maybe sometimes it is good to not spend all our time worrying about bg’s and A1C’s, and actually enjoy life for a change. That doesn’t mean we ignore our diabetes, just that we don’t let it preoccupy every waking moment. Been there, done that!!!
FWIW when I was diagnosed back in 75 there was no testing and carb counting. It was 1 shot a day, stay away from sugar and do the best you can. To be honest if I couldn’t feel my sugar swings as much as I’d still be concerned about the long term effects of this mother I would not let it be destroying my life. I don’t see how when one feels physically and emotionally drained from the nasty effects of sugar swings one could enjoy life to any extent.
Gary of course it makes sense that when you feel terrible, and it seems that no matter what you do you can’t feel better, life seems out of control. I can’t counsel as I’m not in your shoes, but I do understand the mind/body connection – most people talk about this in terms of getting happier, but don’t always acknowledge that it also has a great deal to do with feeling unhappy. (Don’t get me wrong I don’t believe happiness is a sustainable emotion as in finding nirvana on earth. I just mean a sense of peace, at the very least).
The only thing is, our bodies are so complex and because we have a sort of solution to managing diabetes, it is easy to blame what you are feeling on BG. I agree with others that you should have some other things checked out.
Also, are there some happy days/moments sprinkled in there with the tough ones? If so, maybe you can cling to those as a way to pull yourself out of the dark periods, when possible…
Oh yeah one more thing. All drug ads are ridiculously bucolic and somewhat hallucinogenic, if you ask me. The thing is to make fun of them. I’m half convinced that the people who make them want us to feel high to buy their product. Either that, or they are as cynical as I can be.
I see from your profile that you are doing shots. You should probably consider moving to a pump. If you can manage the CGM, run don’t walk. With those two items you should be able to flatten some of the peaks and valleys. I avoided the pump for a good 33 years and now I’m wondering what the heck was wrong with me. I had an issue with tubing in my defense.
If it is impacting your life so strongly, you should keep your doctor in the loop to see if there’s a fix for this. It also might help to speak with a counselor. Long-term diabetes can do a job on you and really bring you down. Depression doesn’t just make you sad, it can manifest in a number of ways.
LOL!
I was diagnosed in the stone knives and bearskins days too, started with boiling a glass syringe and luer (sp?) needles, but at least they taught me to do urine testing.
But I do want to reassure you, yes there is more to life than bg’s and insulin, and you will come out of the other side of this, because I’ve been there and come out too. I’m not saying I never get bothered by my bg swings, obviously I do. Just that there is more to life than bg swings.
Somehow I got out of those phases without professional help, but if I found myself back there again I think I might try to take advantage of it. Still, my doc doesn’t know what living with 30+ years of diabetes is like, that CDE’s only been at it for a couple years too, and a psychologist probably wouldn’t get it all. So I’m not sure who would be there to help me. Still, someone might be able to help.
I’m sorry - maybe I’m missing something…but I looked at your profile and your profile says your last A1c was 8.5. That roughly equates to a day-to-day average of a BG reading around 197…nowhere near the ‘90’ you cite as your key glucose level. As an average that means that half the time you are OVER 197, so it doesn’t seem shocking to me that you don’t feel well. All I can suggest is that you test more often, correct when needed, and just keep trying! It’s a hard routine to deal with everyday, but it’s one we have to deal with!
Result of thyroid test came back 2 days ago ; GP called…it’s in the normal range this time . So I have those days : unexplainable lows and highs ( frustrating to say the least ) …seems everything ( food , exercise )is same as usual …my bod just wants to do it’s own thing .
Hang in Gary; I will too !!
lab norms DO NOT mean its normal for you. where in the normal range are you? high normal? low normal? are your actual thyroid hormones (not pituitary tsh hormone) within range?
i would ask more questions.
I would get a copy of the labs and find out what tests were run and where you fell within those lab ranges. A lot of doctors only look at TSH and that means nothing. Since you are T1, chances are good you have Hashimotos. With Hashimotos, TSH is even more useless. You want to have Free T4 and Free T3 tested. Your Free T4 should be about mid-range of the lab range and the Free T3 in the upper 2/3rds. I had a PCP tell me that my thyroid was fine because she was looking at a TSH (which I might add was even considered high by people that only look at TSH). I was sitting with copies of labs she had done 2 weeks prior that showed my Free T4 was so low it was not even registering a number at that point. I took the same labs to an endo that specialized in thyroid and was told my numbers were horrible. No matter what the test, never accept “it is fine” from a doctor. Get copies of the labs, look at the numbers yourself and find out what optimal should be for that particular test.
I’ve often noticed that as a diabetic I attribute every “weird” feeling to BG issues. When I’m hungry I assume I’m low and after eating a high carb meal or a piece of candy I get sluggish and assume I’m high. I started on a CGMS about 5 months ago and I quickly realized that sometimes these feelings are actually independent of BG. Sometimes I am hungry or sluggish when my BG is level at 95. Knowing these things doesn’t always make the feeling of anxiety go away but with the help of the Dexcom I know that if there is an issue I will be warned enough in advance before it becomes a real problem.
Maybe a CGMS could give you the piece of mind you need to shed some of the BG anxiety and start to feel better more often…