noblehead said:How awful for you Hooked, sounds like a hypo from hell
Did your consultant/dsn not advise you on adjusting your insulin doses after wearing the CGM?
No, my sugar levels are so random. I record every detail, every morsel I eat, exercise etc etc. Spending and hour and a half with the DSN she said to stay on the insulin doses I'm on and doing what I'm doing. Levels can be up and one time, down at another. Reactions to insulin/food seems to vary randomly from one day to the next. One night I'm up high, another night I'm running low. Very frustrating, esp as I am getting treated for retinopathy and now have nerve damage. Been struggling for years with it, and I think it's only now - after me wearing the CGM, that the diabetic team are realising it's not me being careless, my diabetes is just all over the place. Soul destroying as I watch it destroy my body, but doing all I can to get it sorted.
Back with the consultant on 15th - 11 months since I last seen him due to over stretched clinic - will be pushing hard to get a pump in the hope that it will help.
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I don't know a great deal about it Hooked but I know someone who had similar problems (where no two days were the same) and they were diagnosed as having Brittle Diabetes, hopefully the consultation with the specialist will come up with some ideas.
noblehead said:
I have wondered about brittle diabetes, but that name has never been put to it - as yet.
I'm used to being tired most of the time, but today I'm totally wiped out altogether!
Robinredbreast
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I feel for you. I also have night hypos and they are so scary. I had a sever hypo the other week and I too had had 3 white wine and soda. I can't remember anything after going to the bar for the 2nd drink. Nobody realized I was having a hypo. I was having a night away and going to a concert. I collapsed when I returned to the hotel for the tickets. I never got to go to the concert I found this very scary as I cant remember anything until the early hours of that night. I then looked into this and found that I was having hypos during the night too. 3am tests proved this. I now have to have a supper each night to stop this. I hope you get it all sorted very soon.
I found this very scary as I cant remember anything until the early hours of that night. I then looked into this and found that I was having hypos during the night too. 3am tests proved this. I now have to have a supper each night to stop this. I hope you get it all sorted very soon. Good nights sleep last night. Thank goodness, cos I was exhausted!
I'm off to the dietician soon; not sure what pearls of wisdom they are hoping she will impart to me though. I wouldn't claim to know it all, but my diet isn't completely awful and my carb counting is pretty good after 26+ years of practise.
I'm off to the dietician soon; not sure what pearls of wisdom they are hoping she will impart to me though. I wouldn't claim to know it all, but my diet isn't completely awful and my carb counting is pretty good after 26+ years of practise.
Stefano
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Hi sorry to hear about that. I know it can be very frustrating. I am also having lots of hypos these week without any reason. I am changing again my basal setting in my insulin pump. Last week i was in a shopping centre and my blood sugar dropped so quickly that I had to ask for a coke in a shop and sit for 20 minutes as i was going to faint.
I also don't have any real pattern. I mean at least every 2 weeks I have to change my basal settings or bolus ones.
Lucky enough I use a CGM which is really great for me as I can sleep now without fear of getting low and not realising. I was willing to pay for the CGM but the NHS has agreed to pay at least till next April 2014 because of my unpredictability. Maybe it is worth for you to ask for one. S.
I also don't have any real pattern. I mean at least every 2 weeks I have to change my basal settings or bolus ones.
Lucky enough I use a CGM which is really great for me as I can sleep now without fear of getting low and not realising. I was willing to pay for the CGM but the NHS has agreed to pay at least till next April 2014 because of my unpredictability. Maybe it is worth for you to ask for one. S.
Stefano said:
Oh dear, that's not good.
I'm working on getting a pump first. I got a week on a CGM, which was good as the consultant usually looks to get that done before putting anyone on a pump, so I've a head start, lol. Once I get onto a pump I'll see how things go from there.
Dietician reckons I need to eat carbs for breakfast and it might help combat the general rise that goes on during the day. She also mentioned eating fruit with some of my meals. Not sure how that's meant to help my levels or if just a general tip as I don't have much fruit in my diet (but lots of veg in there instead). I'm to try it for a week and get back to her.
rachy0121
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oh goodness that sounds scary. do night hypos happen more often when youve been drinking?
i go out with my friends and drink a lot, on some weekends and thankfully this has never happened but if a hypo in the middle of the night is more likely after drinking then i will reconsider how much i drink
i do always have meals before hand though x
i go out with my friends and drink a lot, on some weekends and thankfully this has never happened but if a hypo in the middle of the night is more likely after drinking then i will reconsider how much i drink
i do always have meals before hand though x
rachy0121 said:
Alcohol lowers blood sugars and also stops the liver from producing glucose when your levels drop too low. It can lead to what is called Dead in Bed syndrome. You are wise to always eat before drinking, checking levels can also help.
This is the first time I ever had a bad hypo due to alcohol. (Again, I usually more than cover it with food!) But it has scared me enough to put me off drinking at all for the time being.
Brittle diabetes now. How many layers of folklore will they invent before they catch on to the fact that for many people the nostrums just don't work.
Hooked, do you get a swelling just under your breast bone that is sometimes like a pyramid trying to push through your abdominal wall? If so the duodenum is oedematious, probably due to infection and is sending the wrong signals to your glucose system. You can not control your blood sugar because something else is doing it for you. Talk to your doctor about the swelling. I have found antibiotics which can be taken long term such as penicillin and erythomycin stearate are effective in reducing the inflamation and correcting the signalling. There are two candidates for the bacterium Clostridium novyi type A (nasty and spore forming so difficult to clear) and Klebsiella mobilis (recent Nature article). My retinopathy, kidney problems, and nerve damage have cleared up by the use of antibiotics alone.
Hooked, do you get a swelling just under your breast bone that is sometimes like a pyramid trying to push through your abdominal wall? If so the duodenum is oedematious, probably due to infection and is sending the wrong signals to your glucose system. You can not control your blood sugar because something else is doing it for you. Talk to your doctor about the swelling. I have found antibiotics which can be taken long term such as penicillin and erythomycin stearate are effective in reducing the inflamation and correcting the signalling. There are two candidates for the bacterium Clostridium novyi type A (nasty and spore forming so difficult to clear) and Klebsiella mobilis (recent Nature article). My retinopathy, kidney problems, and nerve damage have cleared up by the use of antibiotics alone.
mrman
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You must be so frustrated, but at lest your team are looking into it and know its not being complacent. You did mention damage to nerves, there is a nerve in the stomach (vagus nerve I think). A type 1 diabetic had damage to this particular nerve which I think controls the flow of food. With this particular nerve damage can cause foods to sometimes digest ok, sometimes delayed for different periods of time. This makes insulating fire food very difficult. A pump did help as things could be adjusted with immediate effect. Also drugs to help, either way would go for a pump asap.
Hope your team come up with am explanation for you, at least that way you know whats going on.
Sent from the Diabetes Forum App
Hope your team come up with am explanation for you, at least that way you know whats going on.
Sent from the Diabetes Forum App
Hey Hooked,
You are probably suffering from what I have. Have your people look into 'labile' or 'brittle' diabetes a rare form of Diabetes that 3 in 1000 diabetics have, so we are literally a type 3 diabetes that most health care professionals are not trained to deal with.
See: http://rarediseases.info.nih.gov/gard/11900/brittle-diabetes/resources/1
Brittle diabetes is characterized by severe instability of blood glucose levels with frequent and unpredictable episodes of hypoglycemia and/or ketoacidosis that disrupt quality of life, often requiring frequent or prolonged hospitalizations.[1] These unpredictable episodes are due to an absolute insulin dependency, affecting type 1 diabetics almost exclusively. Brittle diabetes is most common in women in their twenties or thirties, but can occur at any age and in either gender. The condition may be caused by stress and hormonal inbalance, neglect of self-care (noncompliance), or underlying medical conditions such as malabsorption, delayed gastric emptying due to autonomic neuropathy, drug or alcohol use or abnormal insulin absorption or degradation.[1][2] Treatment is difficult and dependent upon the underlying cause.[1]
Last updated: 8/22/2013
References
McCulloch DK. The adult patient with brittle diabetes mellitus. UpToDate. August 17, 2012; http://www.uptodate.com/contents/the-ad ... noProvider. Accessed 8/8/2013.
Difference: Stable VS Brittle. Brittle Diabetes Foundation. http://www.bdtype1.com/#!bd-info/vstc8= ... vs-brittle. Accessed 8/8/2013.
Some people that have liver or pancreatic problems can be a source, but there are many people that have it and most health care workers are not knowledgeable about it and often are ignorant of it even existing., and they do not like to tell you that they do not know. It is a horrible sort of diabetes as no two injections are the same and no two meals have the same outcome. My levels were somewhat under control for 10 or 15 years (within reason) and the past 2 years have been hell. I am about to start a pump therapy that has me worried as I have always injected myself. In fact tomorrow I meet about a CGM permanent for a period and they are trying to weasel of of that!
I would back off on your Lantus a bit how much do you take?.. curious if you take that at night? When I had this problem I started doing my Lantus in the AM and it helped me. Email me maybe we can help each other over time...
P.S. Google and read about red wine and diabetes as it is known to lower blood sugar levels! Not good to do that if you are suffering from lows at night. In fact probably the fat in the crisps mixed with the red wine that did it, fat takes longer to break down that normal carbs. Other foods that can freak your sugars out are cinnamon and radishes, which can also drastically reduce sugar levels, as can green tea peanut butter, almonds or pecans can lower levels, as can 2 tablespoons of vinegar before a meal even as part of a vinaigrette salad dressing will dramatically reduce the spike in blood concentrations of insulin and glucose. It's all about finding what foods you can help to use as manage your levels best as possible, and know which can help or hinder, as often we have no idea what caused it. Maybe you had red wine and were your crisps vinegar crisps? Anyway I should be starting my pump soon and happy to let you know how this proceeds as it has been a real roller coaster for me too, perhaps we can exchange emails.. add me as a friend and keep in touch
You are probably suffering from what I have. Have your people look into 'labile' or 'brittle' diabetes a rare form of Diabetes that 3 in 1000 diabetics have, so we are literally a type 3 diabetes that most health care professionals are not trained to deal with.
See: http://rarediseases.info.nih.gov/gard/11900/brittle-diabetes/resources/1
Brittle diabetes is characterized by severe instability of blood glucose levels with frequent and unpredictable episodes of hypoglycemia and/or ketoacidosis that disrupt quality of life, often requiring frequent or prolonged hospitalizations.[1] These unpredictable episodes are due to an absolute insulin dependency, affecting type 1 diabetics almost exclusively. Brittle diabetes is most common in women in their twenties or thirties, but can occur at any age and in either gender. The condition may be caused by stress and hormonal inbalance, neglect of self-care (noncompliance), or underlying medical conditions such as malabsorption, delayed gastric emptying due to autonomic neuropathy, drug or alcohol use or abnormal insulin absorption or degradation.[1][2] Treatment is difficult and dependent upon the underlying cause.[1]
Last updated: 8/22/2013
References
McCulloch DK. The adult patient with brittle diabetes mellitus. UpToDate. August 17, 2012; http://www.uptodate.com/contents/the-ad ... noProvider. Accessed 8/8/2013.
Difference: Stable VS Brittle. Brittle Diabetes Foundation. http://www.bdtype1.com/#!bd-info/vstc8= ... vs-brittle. Accessed 8/8/2013.
Some people that have liver or pancreatic problems can be a source, but there are many people that have it and most health care workers are not knowledgeable about it and often are ignorant of it even existing., and they do not like to tell you that they do not know. It is a horrible sort of diabetes as no two injections are the same and no two meals have the same outcome. My levels were somewhat under control for 10 or 15 years (within reason) and the past 2 years have been hell. I am about to start a pump therapy that has me worried as I have always injected myself. In fact tomorrow I meet about a CGM permanent for a period and they are trying to weasel of of that!
I would back off on your Lantus a bit how much do you take?.. curious if you take that at night? When I had this problem I started doing my Lantus in the AM and it helped me. Email me maybe we can help each other over time...
P.S. Google and read about red wine and diabetes as it is known to lower blood sugar levels! Not good to do that if you are suffering from lows at night. In fact probably the fat in the crisps mixed with the red wine that did it, fat takes longer to break down that normal carbs. Other foods that can freak your sugars out are cinnamon and radishes, which can also drastically reduce sugar levels, as can green tea peanut butter, almonds or pecans can lower levels, as can 2 tablespoons of vinegar before a meal even as part of a vinaigrette salad dressing will dramatically reduce the spike in blood concentrations of insulin and glucose. It's all about finding what foods you can help to use as manage your levels best as possible, and know which can help or hinder, as often we have no idea what caused it. Maybe you had red wine and were your crisps vinegar crisps? Anyway I should be starting my pump soon and happy to let you know how this proceeds as it has been a real roller coaster for me too, perhaps we can exchange emails.. add me as a friend and keep in touch
Hooked said:
Here is a nice link for you on brittle, and google and read about malabsorption syndrome, and specifically read about 'delayed gastric emptying' which is due to autonomic neuropathy http://rarediseases.info.nih.gov/gard/11900/brittle-diabetes/case/40646/case-questions#6993 if you suffer from neuropathy you could be poly neuropathic many many or more than one nerve is having issues
Clem said:
Thanks for your message; I have wondered about brittle diabetes for years, but never seen it clearly defined before now, so wasn't sure. I'll ask about it next time I see them (I'm to see the diabetic dietician at the hospital in two weeks again).
Lantus: I take 17u at 10pm. This had been keeping me fairly even during the night, but seems to wear off during the day. After the episode I originally posted about happened it went back to keeping me even overnight. Then I was going hypo early mornings, so dropped it to 16u. This was great for a few days, then I started to have highs in the morning again. Upped it back up again to 17u and it again evened out. Now I'm getting a small rise in sugar levels in the morning compared to the night before; but not enough yet to rush into adjusting the Lantus again. This seems to be the norm, myself, Dr or nurse trying to second guess if it needs to go up or down a unit to help, then the pattern shifts on it's own.
They are considering (until I can get onto a pump) splitting the Lantus into two doses. For now I'm on 3 units of quick acting in the morning on top of what ever I'm injecting correction/food wise. It's not working out with this method, so I reckon they'll want to split the dose in two weeks when I'm back to see them.
I haven't really been drinking since, apart from a glass of wine on two different nights. Potential after effects have put me off. I don't plan on drinking much at all, at least until I've got a better handle on things. The wine I had that night was sparkling (my usual tipple). The crisps, I can't remember, but usually buffalo flavour. :eh:
You are right though. The exact same thing, at the exact same time of day never has the same results, and often seems totally random. Times I feel like, "What's the point in trying?!" when I'm putting all this effort in and still a huge range in random numbers for results. But the point is I have to. It's my body that's falling apart getting damaged, and if I don't put the effort in it will get damaged all the more/quicker. If I don't put the effort in, I can hardly expect the diabetic team to be able to fix me.
