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Risk of hypo vs risk of hypers

Discussion in 'Type 1 Diabetes' started by catapillar, Feb 19, 2016.

  1. catapillar

    catapillar Type 1 · Well-Known Member

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    I've just finished my DAFNE course & I have been left with the distinct impression that i need some sense talked into me. Although, usually when I have this feeling I can at least follow the logic of the sense, but I'm struggling and I hoping someone might be able to explain...?

    I was diagnosed 5 years ago. I have no hypo awareness. I am hypo on average about twice a day. I have had about half a dozen incidents of severe hypoglycaemia - all at night, so essentially I don't wake up & once I rouse I am able to treat myself (I live alone). I have had one episode of hypoglycaemic hemiplegia - I woke up at about 2pm unable to move my right arm or leg - luckily when I fell out of bed the packet of dextrose tablets fell off my bedside table & (once I managed to open the packet) it resolved within about 30 minutes.

    The hypoglycaemic hemiplegia did scare the living sh*t out of me, because I figure if my brain was so deprived of sugar it forgot I have a right side it's probably not that big of leap to think it might forget to do breathing next time. So, I bought a dexcom and since then I haven't had any severe hypos, because it alarms before it gets to that stage.

    I am however still very frequently hypo. I feel like I can either manage the highs or the lows but not both together - to avoid the hypos I would need to run at 9-16. I'm not willing to do that - I feel like the risk of running high are much worse and much more unmanageable than the risks of running low. I know full well I can manage the hypos, because that is what I am doing every day. & I feel like I have mitigated the significant risk of the hypos by surrendering my driving licence and getting the Dexcom. I don't think I could manage the complications that would result from running in double figures all the time, for a start it makes me feel awful, I feel terrible when I'm hyper (whereas I completely do not notice hypos), I like all of my toes, I do need to be able to see and I've heard dialysis is a great way to meet people, but I'm not convinced.

    I just... I don't see the problem with the hypos. Obviously it's a pain in the bum and I want to avoid it, but not at the expense of running super high. I am aware this is a poor decision, I just don't understand why it is. Help?

    There is also the issue that running high does make me feel like a big fat failure - as in I do really feel like that is my fault, whereas I don't feel the same sort of responsibility for the hypos at all.
     
  2. steve_p6

    steve_p6 Type 1 · Well-Known Member

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    We are all trying to work to a comfortable range where we can avoid both hypo and hyper, I am not getting from your post what it is that is causing you to be fighting to avoid the extremes.
     
  3. Natalie1974

    Natalie1974 Type 1 · Well-Known Member

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    May be worth doing some basal testing...if you're going hypo in the night it would imply that your insulin might need some tweaking.
     
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  4. catapillar

    catapillar Type 1 · Well-Known Member

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    Thanks @Natalie1974 , I have dramatically reduced by basal since that incident and night time hypos aren't so much of an issue - I'll get 2 or 3 a month, usually after exercise, and they aren't severe because get woken up by dexcom to treat them.

    No, me either, i guess if I did it would be much easier to fix it :) . To be honest I think I've just reached a tipping point where one unit more or less makes all the difference - with the same 80g carb breakfast, same activity, same basal, similar waking levels: on Monday I take 6'u and it peaks at 8 but drops to 2.2 2 hours later, I bring it back up to 6 with dextrose, it falls again and I treat again; on Tuesday I take 5u and it peaks at 14 and hangs around at 11 till lunch. If these are my options, I feel like I'm better off with Monday, both from an immediate functioning point of view (with the hypos I can't feel it and I eat some sugar, with the hyper I feel like death, I can't think and I feel guilty) and the long term risk point of view.
     
  5. Blackers183

    Blackers183 Type 1 · Well-Known Member

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    Unfortunately Catapillar we need to manage our BGL within a range to prevent or minimise complications. Frequent lows are known to cause longer term cognitive problems in addition to the immediate issues of loss of awareness, confusion, etc. I was surprised at how high some people were running at post DAFNE to raise their hypo awareness but it seemed to work, for most. Something that perhaps you need to get agreement from your health care team and I assume that you can contact the DAFNE people, they continued to provide advice and support for 12 months post course to us.
     
  6. catapillar

    catapillar Type 1 · Well-Known Member

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    Thanks @Blackers183 I think it is the risks of the hypos that I need more information on to make it make sense to me. At the moment all I see is I have to eat some sugar, which is no big deal. I did ask on the course about the risks of hypos and cognitive impairment was mentioned, but with no real detail on what that actually meant in terms of how much impairment, what level of hypos made the difference and what long term meant in this context.

    If anyone has any more information on the risks of hypos, or can point me in the right direction of where to find it, I'd be grateful.
     
  7. noblehead

    noblehead Type 1 · Guru
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    @catapillar, has the term Brittle Diabetes been mentioned to you, people with BD can have huge and unpredictable swings in bg levels such as those that you are experiencing:

    http://www.healthline.com/health/what-brittle-diabetes#RiskFactors2

    Either way probably the best solution for you would be a insulin pump, you'd certainly meet the criteria so perhaps mention it to your diabetes care team.
     
  8. catapillar

    catapillar Type 1 · Well-Known Member

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    Thanks @noblehead my diabetic team are pretty un-engaged to be honest, so no one has mentioned brittle diabetes. Part of me wants to say it makes sense - my insulin sensitivity varies pretty wildly according to my menstrual cycle - but then, it's just giving a name to it. I don't think it makes any difference to treatment, does it?

    I think I'm on the waiting list for a pump now I've completed DAFNE. But, as it took over 6 months to get on the course (which I had to go out of area for, because my CCG hates diabetics) I'm not holding my breath!
     
  9. noblehead

    noblehead Type 1 · Guru
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    The DAFNE course, or the ability to prove that you have good carb counting skills is a prerequisite before moving to a insulin pump @catapillar .

    It can't be easy having so many hypo episodes and I really do feel for you, just a week or two ago there was a member on here called @yingtong who changed to a insulin pump last year, he had lost his hypo awareness symptoms in recent years but they have recently returned thanks to being on a pump and not experiencing as many hypoglycaemic episodes.

    The beauty of.being on a pump is the ability to have multiple basal rates, deliver bolus doses in smaller increments (and over extended periods if necessary) and the option to use TBR's (temporary basal rates) in times of illness/stress or when exercising, I really do think you'd reap the benefits of using one.
     
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  10. catapillar

    catapillar Type 1 · Well-Known Member

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    @noblehead you are preaching to the choir, I would love a pump!
     
  11. noblehead

    noblehead Type 1 · Guru
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    Just keep pushing them :)
     
  12. dancer

    dancer Type 1 · Well-Known Member

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    Have you tried a half unit pen? You say that 1 unit makes a big difference to your blood sugars, so why not try increasing/decreasing by half a unit instead. This made a difference to my control before going on the pump.
     
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  13. catapillar

    catapillar Type 1 · Well-Known Member

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    Thanks @dancer I've not considered a half unit pen before, but it does sound like it might be worth a try - thank you.
     
  14. DunePlodder

    DunePlodder Type 1 · Well-Known Member

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    Hi Catapillar. I know from past experiece how tiring big bg swings are, you must be exhausted all the time. The CGM was a good move.
    Your basal may still be a bit high - what does your Dexcom graph look like overnight?

    Looking at your post breakfast experiences it strikes me that 80gm is quite a large amount of carbs. I don't "low carb" but normally none of my meals would be that high - typical breakfast is about 17gm.
    The problem is that the more carbs we eat at once, the higher the dose of insulin needed. The catch then is that the higher the dose, the less predictable the absorption is, which I think perhaps is what you are finding.
    Maybe try reducing carbs as an experiment?
     
  15. Charles Robin

    Charles Robin Type 1 · Well-Known Member

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    Hi Catapillar, you've run into the problem of the diabetic roller coaster. It gets more unpredictable the more carbohydrate you have in your diet. Like me, you worry mostly about the highs. Your health team probably lecture you about the lows.

    There is a way out though! I've been eating low carb for the past two years (after 26 years of life eating high carb) and the transformation on my control has been amazing. It sounds extreme and like something that's too hard, but now I actually enjoy my food because I feel like I'm in control. Now for some facts about carbohydrate to hopefully sell the idea (or at least make it interesting enough to research further).

    Firstly, nutrition information, and what they don't tell you. Food manufacturers are allowed a margin for error. In the uk the margin is 20%. So if you expect to eat 100g of carbohydrate, you may be eating 80. You may be eating 120. Matching your insulin to that is almost impossible.

    Secondly, insulin, and (you might notice a trend here) what they don't tell you. The term 'fast acting insulin,' is misleading. We have no injectable insulin that can lower blood sugars as quickly as carbohydrate raises it. Even supposed slow acting foods like bread will win every time. So your blood sugars go too high, you panic and inject too much insulin, then you go hypo later.

    Thirdly, insulin and what they also don't tell you. The more insulin you have in your system, the worse it will work. Our bodies can reject foreign insulin just like rejecting an organ transplant. Our immune system will neutralise some of the insulin we inject in large doses. Also, our bodies become insulin resistant when a lot of it is regularly going round our systems. Insulin also controls our hunger levels. Have you ever eaten a massive meal and still been starving afterwards? That's why.

    These are the main reasons I eat low carbohydrate meals. I inject a tiny amount of insulin compared to my previous doses. So my hunger levels are manageable. I don't get resistant to insulin, and my body's immune system doesn't notice the foreign insulin so much. Also, if I eat a meal with 10g of carbohydrate, the margin for error is far more predictable.

    Go to YouTube and look for videos by Dr Troy Stapleton. He was diagnosed with type 1 in 2012, and quite quickly adopted a low carbohydrate diet. He talks in depth about how his levels have stabilised so much since he did so. Hope that helps!
     
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  16. DunePlodder

    DunePlodder Type 1 · Well-Known Member

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    Take a look at http://www.diabetes-book.com/laws-small-numbers/
    Dr Bernstein is an advocate of low carbing. I'm too fond of my food to do this fully, but I have tried it for odd days & have no doubt that what he says make sense.
    Your Dexcom is great for doing experiments. I know it's difficult for you right now but if your bg level is steady try something like eating a jelly baby (5gm?), don't take any insulin or do any exercise & watch the graph. Note how long it takes to change & how much it goes up by.
    You can try a similar experiment if say you are a bit high, but steady, and give yourself 1 or 2 units of your fast acting insulin & note the results. I find it takes a surprisingly long time before it has any effect, even allowing for the Dexcom's lag.
    It helps to know how your body reacts to these things when you are sorting out problems.
     
  17. azure

    azure Type 1 · Expert

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    I second the half unit pen. I have a pump but keep a pen for back up, and the difference in flexibility is great. You wouldn't think such a small thing could help, but it does. It's great for more accurate corrections too.

    But the pump should make a big difference. It changed my life quite literally.

    Keep pushing for it!
     
  18. RuthW

    RuthW Type 1 · Well-Known Member

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    I second the low-carb suggestion. But I also want to point out that you may have done the DAFNE course, but as yet you do not seem to have gained the full benefit. Your statement that your BS is 2.2 2 hours after eating is crystal clear evidence that you need to Adjust your Dose. Secondly, just accepting night time hypos after exercise is also.evidence that you are not Adjusting your Dose for activity. I don't think you have brittle.diabetes. I think you just need to spend time (and.patience) to identify each problem one by one, and.solve it one by one. A pump.won't do it. You do need to be completely rigorous about testing and record keeping for a few months, though. It is hard to break out of this kind of cycle, but you can do it.
     
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