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What do we know about ME and Hypoglycemia?
Does ME cause Hypoglycemia (low blood sugar)?
Does ME crashes immediately drop blood sugar even lower?
Do many people have Hypoglycemia and they think it's ME, because the doctors haven't looked at Hypoglycemia and the symptoms are the same in many cases (including blurry vision, dry eyes, not thinking straight, slurring words, fatigue of course, headaches, slurring words, brain fog, muscle aches, mood irritability, heart problems, breathing problems....etc) then it leads me to wonder out of the millions who have ME, who have Hypoglycemic and don't know it, thinking it's ME, which van be very dangerous.
Hypoglycemia can be caused by lots of things but can Hypoglycemia be a symptom of ME? And isn't actually anything to do with metabolising food, or a problem with insulin or other known problem?
Hypoglycemia can be caused by many things including inherited genetic metabolic diseases (Inborn errors of metabolism). This includes problems with fatty acids, fructose and glucose.
Apparently Hypoglycemia is rare in non diabetics but common in ME.
ME is an unknown condition as we know, but maybe they just haven't found the cause of it to be a metabolic gene. Since people with ME have a problem with fatty acids - and people with a problem with fatty acids can get muscle pain from exercise be diagnosed with a certain metabolic disease like CPT2 (from watching "diagnosis" on netflix). And people with ME can have Glucose problems - which is also a specific metabolic disease that people can be diagnosed with. The similarities for ME to fit as a metabolic problem seem to be there to make it such.
My issue is that people just aren't genetically tested before getting the ME label and go through their whole life potentially with extreme fatigue and pain every damn day, not knowing if actually Hypoglycemia could be contributing to the symptoms, being so similar or the same.
I won't list all the causes of Hypoglycemic, but in terms of things to ask my GP about, is there any more than the following treatments (the GPs won't prescribe minerals or vitamins but I can try them):
Acarbose
Zinc
Vit D
Chromium
B1
B3
Potassium
Do any of the above stick out?
GPs don't test all of the above on blood tests, only iron and vit D. These were at the lower end on the last test on January this year, but they are considered within NHS normal ranges so don't think I need any higher. I hear different things online, that some people fare better with higher vit D rather than being on the boundary of low, and the NHS doesn't consider it. But obviously people with ME tend to not get out anyway, making vit D levels lower or too low. My iron is low but within normal range because I struggle to eat, it's not because I'm restrictive with the type of food I eat.
Here's 3 examples.
Example 1: I watch YouTube videos for a few hours and haven't eaten, and this is too much cognitive energy. I feel I need to stop but I must eat as haven't eaten all day. I then read a 5 on glucose monitor immediately before I eat X2 wholegrain low carb bread with no sugar baked beans. I immediately have worsening concentration, muscle pain, vision problems - but nothing really painful.
I feel myself crashing with ME about 15 mins after eating, I am extremely drowsy and fall asleep. I have extreme drowsiness and semi conscious (more asleep than awake), when I sleep again I have nightmares. I wake up just to the alarm for the glucose test after 2 hours, it reads 1.7 (so I've gone from 5 to 1.7 in 2 hours after eating). I only just do the test because I'm so out of it. I fall back to sleep, not by choice. I wake up and feel severely drowsy, with post malaise fatigue the symptom that is obvious after the drowsiness wears off after a considerable time. After other episodes I can be severely drowsy for hours after I wake and can't snap out of it (there is a difference between extreme drowsiness and extreme fatigue).
How do I work out which is ME and which is Hypoglycemic? I seem to get extremely drowsy and have nightmares as the Hypoglycemic part. I read that drowsiness isn't ME, although of course extreme fatigue is, I don't know how everyone else feels about that.
On the other hand other times I have no obvious symptoms because when I get more ill I put it down to ME, other times I am not too unwell and yet read LO. Other foods I eat I get a response of 5 or 6 after eating, but these are not high sugar foods - things like mackerel and salad and fish and stir fry. And yet Chinese takeaway is high in sugar and reads a happy 8 after 2 hours.
I can't work out a pattern.
Only when I crash with ME (ME activity or stress causing ME) I seem to get worse readings or LO after eating. So I can't yet work out whether it's a food/insulin problem, or ME.
It doesn't look like carbs are the sole issue as seen here:
Example 2: I measure 4.8 as soon as I wake up. I eat 2 eggs and 2 bacon for breakfast. After 2 hrs it's 2pm and I read 1.7. Here I've eaten no carbs.
Example 3: 4:30pm I haven't eaten much and read 1.5 immediately before a meal. I eat a small restaurant meal (yes I made it out! And remember these are small portions but filled me up): chicken in creme fraise sauce, potatoes, broccoli. Lemon in water (helps regulate blood sugar?), Apple pie with ice cream. 30 mins after finished eating it's 1.3 so hasn't started to climb which seems odd to me this late after eating? 2 hrs later it's LO (as in under 1.1).
My Dr gave me a Glucose monitor which the NHS in the UK are not supposed to do, as it's only for people who are diabetic or suspected pre-diabetic or diabetic, to see for sure whether I have a problem - as I PERSISTED to ask to look further into this, saying I do have a problem crashing after I eat, and half way through a meal even. It was just by chance we found I'm Hypoglycemic every day because, as I say I got this Glucose monitor - but because they did the test for fasting glucose and the test where it looks at your Glucose over 3 months, and they said my Glucose levels were normal. Two doctors said I had NO problems with glucose. And I asked whether my lack of eating (long term not eating) could affect the 3 month average - I was told no as it's taken over 3 months. Later I read online that it can make a difference! After finding out I'm hypo the nurse said it's because they gave me the wrong test! This is the problem - they only look at potentially high blood sugar being an issue, not low blood sugar. And I'm as skinny as a rake and said I've had long term problems with eating, every day, and yet they don't look at low levels of glucose!
Since I have had ME for 14 years and by pure chance I was recently diagnosed as having Hypoglycemia.... I think they definitely could of found this out before I even got ME. I have had eating issues I've needed help for way before ME. As I asked for help with my eating many years ago - and denied by the eating disorder clinic here in the UK, despite me trying multiple times AND with ME being severe, I was so bad for a long time I was crying to the NHS down the phone asking for a feeding tube.
They don't help you unless you fit nicely in that tick box of thinking you are fat and counting calories, instead of starving yourself due to stress, of not eating due to ARFED autism traits, or ME for that matter.... They just don't help when you ask for help, if you fall in a grey area - as many people do.
Starving yourself because of anorexia body image delusions is accepted for help, starving yourself due to other reasons such as chronic stress (not just ME inability to get up to eat and ME depression) and the need to control food (even though it is the same or almost the same process as anorexia - the stress causes the need to control food as long as possible and just as severe) is not accepted for help.
Anyway lots to comment on! Back on track.... Hypoglycemia and ME - what do we know? What are the facts? I'm keeping a food and glucose combined diary but this is labour intensive with ME, and yes I know this post is also labour intensive, it took me my days worth of energy to write this out! I do hope some of you can tell us some key points about the link between Hypoglycemia and ME for my journey, and others who may not be aware of the link.
Does ME cause Hypoglycemia (low blood sugar)?
Does ME crashes immediately drop blood sugar even lower?
Do many people have Hypoglycemia and they think it's ME, because the doctors haven't looked at Hypoglycemia and the symptoms are the same in many cases (including blurry vision, dry eyes, not thinking straight, slurring words, fatigue of course, headaches, slurring words, brain fog, muscle aches, mood irritability, heart problems, breathing problems....etc) then it leads me to wonder out of the millions who have ME, who have Hypoglycemic and don't know it, thinking it's ME, which van be very dangerous.
Hypoglycemia can be caused by lots of things but can Hypoglycemia be a symptom of ME? And isn't actually anything to do with metabolising food, or a problem with insulin or other known problem?
Hypoglycemia can be caused by many things including inherited genetic metabolic diseases (Inborn errors of metabolism). This includes problems with fatty acids, fructose and glucose.
Apparently Hypoglycemia is rare in non diabetics but common in ME.
ME is an unknown condition as we know, but maybe they just haven't found the cause of it to be a metabolic gene. Since people with ME have a problem with fatty acids - and people with a problem with fatty acids can get muscle pain from exercise be diagnosed with a certain metabolic disease like CPT2 (from watching "diagnosis" on netflix). And people with ME can have Glucose problems - which is also a specific metabolic disease that people can be diagnosed with. The similarities for ME to fit as a metabolic problem seem to be there to make it such.
My issue is that people just aren't genetically tested before getting the ME label and go through their whole life potentially with extreme fatigue and pain every damn day, not knowing if actually Hypoglycemia could be contributing to the symptoms, being so similar or the same.
I won't list all the causes of Hypoglycemic, but in terms of things to ask my GP about, is there any more than the following treatments (the GPs won't prescribe minerals or vitamins but I can try them):
Acarbose
Zinc
Vit D
Chromium
B1
B3
Potassium
Do any of the above stick out?
GPs don't test all of the above on blood tests, only iron and vit D. These were at the lower end on the last test on January this year, but they are considered within NHS normal ranges so don't think I need any higher. I hear different things online, that some people fare better with higher vit D rather than being on the boundary of low, and the NHS doesn't consider it. But obviously people with ME tend to not get out anyway, making vit D levels lower or too low. My iron is low but within normal range because I struggle to eat, it's not because I'm restrictive with the type of food I eat.
Here's 3 examples.
Example 1: I watch YouTube videos for a few hours and haven't eaten, and this is too much cognitive energy. I feel I need to stop but I must eat as haven't eaten all day. I then read a 5 on glucose monitor immediately before I eat X2 wholegrain low carb bread with no sugar baked beans. I immediately have worsening concentration, muscle pain, vision problems - but nothing really painful.
I feel myself crashing with ME about 15 mins after eating, I am extremely drowsy and fall asleep. I have extreme drowsiness and semi conscious (more asleep than awake), when I sleep again I have nightmares. I wake up just to the alarm for the glucose test after 2 hours, it reads 1.7 (so I've gone from 5 to 1.7 in 2 hours after eating). I only just do the test because I'm so out of it. I fall back to sleep, not by choice. I wake up and feel severely drowsy, with post malaise fatigue the symptom that is obvious after the drowsiness wears off after a considerable time. After other episodes I can be severely drowsy for hours after I wake and can't snap out of it (there is a difference between extreme drowsiness and extreme fatigue).
How do I work out which is ME and which is Hypoglycemic? I seem to get extremely drowsy and have nightmares as the Hypoglycemic part. I read that drowsiness isn't ME, although of course extreme fatigue is, I don't know how everyone else feels about that.
On the other hand other times I have no obvious symptoms because when I get more ill I put it down to ME, other times I am not too unwell and yet read LO. Other foods I eat I get a response of 5 or 6 after eating, but these are not high sugar foods - things like mackerel and salad and fish and stir fry. And yet Chinese takeaway is high in sugar and reads a happy 8 after 2 hours.
I can't work out a pattern.
Only when I crash with ME (ME activity or stress causing ME) I seem to get worse readings or LO after eating. So I can't yet work out whether it's a food/insulin problem, or ME.
It doesn't look like carbs are the sole issue as seen here:
Example 2: I measure 4.8 as soon as I wake up. I eat 2 eggs and 2 bacon for breakfast. After 2 hrs it's 2pm and I read 1.7. Here I've eaten no carbs.
Example 3: 4:30pm I haven't eaten much and read 1.5 immediately before a meal. I eat a small restaurant meal (yes I made it out! And remember these are small portions but filled me up): chicken in creme fraise sauce, potatoes, broccoli. Lemon in water (helps regulate blood sugar?), Apple pie with ice cream. 30 mins after finished eating it's 1.3 so hasn't started to climb which seems odd to me this late after eating? 2 hrs later it's LO (as in under 1.1).
My Dr gave me a Glucose monitor which the NHS in the UK are not supposed to do, as it's only for people who are diabetic or suspected pre-diabetic or diabetic, to see for sure whether I have a problem - as I PERSISTED to ask to look further into this, saying I do have a problem crashing after I eat, and half way through a meal even. It was just by chance we found I'm Hypoglycemic every day because, as I say I got this Glucose monitor - but because they did the test for fasting glucose and the test where it looks at your Glucose over 3 months, and they said my Glucose levels were normal. Two doctors said I had NO problems with glucose. And I asked whether my lack of eating (long term not eating) could affect the 3 month average - I was told no as it's taken over 3 months. Later I read online that it can make a difference! After finding out I'm hypo the nurse said it's because they gave me the wrong test! This is the problem - they only look at potentially high blood sugar being an issue, not low blood sugar. And I'm as skinny as a rake and said I've had long term problems with eating, every day, and yet they don't look at low levels of glucose!
Since I have had ME for 14 years and by pure chance I was recently diagnosed as having Hypoglycemia.... I think they definitely could of found this out before I even got ME. I have had eating issues I've needed help for way before ME. As I asked for help with my eating many years ago - and denied by the eating disorder clinic here in the UK, despite me trying multiple times AND with ME being severe, I was so bad for a long time I was crying to the NHS down the phone asking for a feeding tube.
They don't help you unless you fit nicely in that tick box of thinking you are fat and counting calories, instead of starving yourself due to stress, of not eating due to ARFED autism traits, or ME for that matter.... They just don't help when you ask for help, if you fall in a grey area - as many people do.
Starving yourself because of anorexia body image delusions is accepted for help, starving yourself due to other reasons such as chronic stress (not just ME inability to get up to eat and ME depression) and the need to control food (even though it is the same or almost the same process as anorexia - the stress causes the need to control food as long as possible and just as severe) is not accepted for help.
Anyway lots to comment on! Back on track.... Hypoglycemia and ME - what do we know? What are the facts? I'm keeping a food and glucose combined diary but this is labour intensive with ME, and yes I know this post is also labour intensive, it took me my days worth of energy to write this out! I do hope some of you can tell us some key points about the link between Hypoglycemia and ME for my journey, and others who may not be aware of the link.
I'm planning to go see an endocrinologist when I have the money.
