The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Sugar levels crashing - don't know why

Discussion in 'General ME/CFS Discussion' started by Bd1984, Sep 18, 2015.

  1. Bd1984

    Bd1984

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    Hi all,

    Gradually over the last year I have been feeling exhausted. I am now exhausted every day and have racing heart beat, dizzyness, minor sweating, and feel the need to lie down.

    I've had a blood test and I'm not hypoglycaemic. I've gone back to my doctor again for a second blood test because I still
    have the same symptoms.

    The only thing that can 'bring me back from feeling like death' is when I take six big gulps of coca-cola. Within 60 seconds of lying down on my bed, I'll be standing upright again thinking why does that have such a transformative affect.

    I'm fairly sure my second blood test will show nothing. I was very fit up until this dizzyness started last year. I was running 3 miles a week for at least two years but had to stop because of feeling faint and dizzy.

    Any suggestions or advice would be greatly appreciated!

    Best,

    B
     
  2. Effi

    Effi Senior Member

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    hi @Bd1984 welcome to PR.

    If your test for hypoglycemia came back negative, it could still be the sugar in the coke, but also the caffeine that is giving you a (short term?) positive effect. Sugar can temporarily calm down the nervous system, which in most ME/CFS patients is constantly in overdrive. For some patients (including myself), caffeine also has a positive effect on something called cyclic AMP (more info here), which temporarily relieves certain symptoms.

    Could it have to do not with low blood sugar but with low blood pressure (aka orthostatic intolerance)? You can test this yourself doing the so called 'poor man's tilt test' (more info here).
     
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  3. Bd1984

    Bd1984

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    Hi,

    Many thanks for your suggestions. I don't think I've had low blood pressure in the past. I also quit smoking several years ago.

    I will read over the links you kindly provided me with and will continue to search for some sort of remedy. I don't want to keep drinking coca cola on a daily basis but I'll do it to survive my final
    year of uni!

    Best,

    B
     
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  4. Effi

    Effi Senior Member

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    Having low blood pressure is very common as one of the symptoms of ME. Interestingly a lot of ME-patients rather have low-ish bloodpressure, meaning: usually not dangerously low, but always on the lower side of the 'normal' range. If you want to find out if you have this, it could be a good idea to regularly check your BP yourself at home, as it is very common for blood pressure to be slightly raised at the doctor's office. That way the low/low-ish numbers sometimes go totally unnoticed.

    Good luck on finishing your final year of uni! We all know coca cola is bad, but if it helps you pass I wouldn't doubt it. :cool:
     
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  5. Bd1984

    Bd1984

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    Thanks Effi for all your suggestions. You have given me plenty to research. What is your occupation? It's lovely to get a such a helpful response rather than simply told by the doctor that there is nothing wrong with lol!
     
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  6. Effi

    Effi Senior Member

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    You're welcome @Bd1984 :) My occupation is full time patient (housebound), sadly. It's awful how we get treated by doctors, but at least on these forums apart from endless information, there's loads of support and understanding, so you're safe here! :hug:
     
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  7. Bd1984

    Bd1984

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    Thanks Effi!
     
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  8. Tammy

    Tammy Senior Member

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    I know that you said your blood test showed no hypoglycemia..................but if taking six big gulps of coca cola is making you feel alive again................you've got blood sugar problems! Also..........some of the symptoms you mentioned make me suspect this also. Have you ever looked into reactive hypoglycemia? Just a suggestion.....................and I would get a blood glucose kit if you can to monitor your levels throughout the day. Also if you can I would get your cortisol levels checked to see how your adrenals are doing.............this might have something to do with the unstable glucose levels. I would recommend the test that covers 4x daily......don't get the one that just tests your cortisol level in the morning. Do you eat regularly? I would be eating a healthy snack....... every 2 hours or even more often to see if that helps.
     
    Last edited: Sep 20, 2015
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It may sound paradoxical, but you may be better reducing the amount of sugar (and starch) in your diet, then your blood glucose levels should become more stable. I used to get what felt like extreme blood glucose swings, although results at the doctor's always came back normal, and I didn't have a home monitor then. I have a home monitor now, and my levels almost always test fine. I have reduced sugar and starch, among other changes.

    This thread on emergency snacks may be of interest.

    Good luck at uni, but take it easy. Don't push yourself, rest whenever you feel the need and it is feasible. Pacing is the most important skill to learn and put into practice early if you do have ME/CFS/SEID. Ignoring that can make it worse, and permanently. Not trying to scare you, but just don't want you to make the mistake that so many of us did (including me).
     
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  10. Bd1984

    Bd1984

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    Do you know of a good blood glucose kit (brand name etc?) that you can buy in the UK or on Amazon?? How can you check cortisol levels....is that done by a doctor? I eat regularly and eat throughout the day.
     
  11. Bd1984

    Bd1984

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    Hey MeSci, I have tried to cut down on sugar just because I don't want the extra calories! I'm really only trying to put sugar into my body as part of healthy eating or with the coca cola when I'm feeling like death and need to get out of bed etc when I have a crash.

    I'm just wondering what I should tell my tutor at uni when I start up this Monday. I don't have a direct diagnosis of what I have wrong with me but I know I'm fatigued and have sugar crashes. Hmmmm, it's a tricky one.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Consuming added sugar doesn't really have a place in healthy eating. The body can make glucose from a wide range of foods (including fat and protein), and once you reduce your actual intake of sugar and starch it becomes more adept at doing this. It also has plentiful stores of glycogen - a storage form of glucose - in liver and muscle.

    Have you tried consuming non-sugary foods when you think you need sugar?

    I know that consuming sugar and starch provides instant relief, but it perpetuates a vicious cycle of up-and-down swings in blood glucose, going from too high to too low and leading to symptoms like urgent hunger, weakness and nausea, as well as increasing the risk of hyperinsulaemia, weight gain, pre-diabetes, diabetes and all that flows from that.
     
  13. bertiedog

    bertiedog Senior Member

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    You can buy from Amazon or EBay the Accuchek Mobile Blood Sugar Monitor for around £25 and then you can buy the replacement cassettes for around £21 for 100 tests within 2 cassettes. This is what I use and I agree absolutely that the only way of finding out what is really going on is to take frequent tests starting with fasting and then testing 1 hour after a meal and see how you react to what you have eaten and also how you feel.

    Eventually you might start seeing a pattern. A website and book that really helped me was Blood Sugar 101 and this says one should aim for no higher than 7.7 one hour after meal and 6.7 maximum two hours after eating. These values are for people who do have definite blood sugar issues, you might find you have the opposite, the blood sugar plummets when you eat any sugar or anything with a lot of carbs.

    This used to happen to me, at one time it was impossible for me to keep my blood sugar up to a reasonable level but this was because my adrenals weren't functioning properly at all and unfortunately I have needed a steroid to correct this. Now I have to eat very carefully so my blood sugar doesn't stay too high! For me a walk with my dog does the trick to bring it down but I do also have to stick to a fairly low carb diet with lots of veg, fats and reasonable protein. Your energy levels can be hugely dependent as to what is going on with your blood sugar. The more stable it is, the better you are likely to feel. (Not sure if this only applies to those of us with known blood sugar issues rather than any ME/CFS sufferer).

    Hope this helps because I remember only too well what a nightmare it was to severe blood sugar issues.

    Pam
     
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  14. Calathea

    Calathea Senior Member

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    I'm the one who started that emergency snacks thread, and I have a blood glucose monitor winging its way over from Amazon. One of my support workers has diabetes and is talking me through the whole thing of how blood sugar works.

    What you might find useful is to read up on foods which are good for providing sustained energy. Complex carbs, especially wholegrain, especially sourdough. Protein. There are various things you can experiment with. Oat cakes are good. Eating more often may help, say no longer than 3 hours in the daytime (snacks as well as meals), and no longer than 8 at night. You might find that the best solution when you crash is a combination of immediate sugar and sustained energy release.

    This one is a hunch, but have you tried electrolyte drinks? Many of us need more salt and fluids due to dysautonomia, and that's generally useful for folks with low blood pressure and quite a few others. I've got a number of my friends drinking electrolyte drinks, they find them useful for various things. The Nuun brand is popular. It doesn't contain sugar, although a couple of the flavours have caffeine. I use the caffeinated ones when I need the caffeine boost, especially if I wake up breathless in the morning (caffeine is a bronchodilator), and the rest of the time I stay off caffeine. It's worth buying a tube to see how they make you feel. They can be a really good pick me up.
     
  15. A.B.

    A.B. Senior Member

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    Sounds like you're in the blood sugar rollercoaster. Consuming so much sugar will very quickly raise blood sugar, only to have it fall very rapidly afterwards, at which point you need sugar again. The only way to break out of this cycle is to eat a diet that will stabilize your blood sugar levels. Read about the glycemix index, and try to eat small frequent meals that don't consist of mainly high glycemix index foods. Sugar and especially sweet beverages are forbidden, in my experience there is no way to eat these without destabilizing blood sugar.

    Caffeine, cocoa, and exertion can also contribute to the rollercoaster by making you expend glucose faster.

    Doctors don't pay attention to this and the usual blood tests are designed to detect diabetes, not this type of problem. I had a normal 2 hour glucose tolerance test, but an abnormal 4 hour glucose tolerance test, dropping to low 40's mg/dL glucose (clinical hypoglycemia), with obvious symptoms and signs.

    Buying or borrowing a home glucose meter is a good idea to confirm that it is indeed hypoglycemia. I'm pretty sure it is, if it's temporarily fixed by sugar.
     
    Last edited: Sep 20, 2015
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    @Bd1984, I would agree with MeSci. I actually doubt you have a blood sugar problem - at least I very much doubt that the coca cola is working through sugar. If you feel better within a minute or two that is too fast for your blood sugar to rise and probably too fast for the caffeine to work. And as MeSci says, trying to manipulate your sugar with taking 'binges' of it is likely just to make you fat and have more sugar swings.

    I strongly suspect that what you get from the coca cola is a 'neurotransmitter rush' - that' my own word for it. We are all familiar with feeling heaps better as soon as a sip of good coffee touches our tongue, or a cool breeze lands on our face having been hemmed inside a hot room. My understanding is that we feel better with the coffee or coca cola because our hypothalamus kicks in as soon as it thinks it is just about to get a slug of caffeine. It does not even need the slug. All it needs is the zing of carbonic (and phsophoric?) acid and bitter caramel. It is happy to send out things like adrenaline and endorphines (via various networks) on zero down payment. Enough for you to, temporarily, take up your bed and walk.

    The trouble with coca cola is that it keeps feeding the hypothalamus the stuff it loves for a quick fix - sugar and caffeine. It also blunts your appetite for slow feed sugar sources like pasta or potatoes that in the long run are likely to make you feel much more on an even keel. Maybe the thing to do is have a single snort of coca cola and follow up with something like a banana or a croissant. The sugar at that point in time cannot really make any difference to the effect on how you feel.
     
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  17. Calathea

    Calathea Senior Member

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    When (I'm guessing) my blood sugar is low, biting into something will sometimes cause an instant small head rush. It happens more with some foods than others, especially citrus. The main variable is how tired I am, and it's always a sign that I definitely need to eat something and probably rest too. Any idea how that works?
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I guess it is what Pavlov called a conditioned reflex. The detailed physiology of it is not something I know about but there must be papers on it.
     
  19. Calathea

    Calathea Senior Member

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    Hmm, even though it doesn't happen all that often? Once or twice a week, I think.
     
  20. gregh286

    gregh286 Senior Member

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    Hi.
    Ive had cfs 2.5 years.
    Increased blood glucose only thing brings me.around.
    Totally non diabetic...multiple tests.
    Part of cfs is poor glucose uptake cellularly.
    You can check out work by fluge and mella and newton in newcastle. Newton proved poor cellular glucose uptake in cfs.
    Back to the point...autoimmune condition inhibits ampk output and poor glucose uptake as a symtom.
    Its contrary to non sugar diet in cfs....but paleo diet BOOSTS ampk so we are stuck between devil and deep blue sea. Ampk activates in starve mode (paleo).

    Anyways..my 2 cent worth.
     
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