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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):
Vit D

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.


Senior Member
Unfortunately I don't know if there's a link between ME and hypoglycemia, but after I contracted covid in Feb 2022 I've had worsening problems with carbs and something that looks like reactive hypoglycemia after I eat anything with too many carbs in it. I started keto diet almost four months ago and it seems to be helping. It also relieved my daily gastroparesis.

A friend gave me her old glucose meter and I've been checking my blood sugar before and after meals. So far it's been very stable at 5.2 mmol/l but I haven't been brave enough to try anything sugary yet (blueberries and a bit of pineapple with yogurt didn't cause problems even though they contain quite a bit of carbs).

I became ill with ME in 2008 but for the first 14 years I had zero problems with carbs (that I know of). But it's possible that I actually had hypoglycemic attacks, I just didn't recognize them.
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Senior Member
Did they check your cortisol and growth hormone levels btw? Those affect blood sugar, and can be low in people with ME if you happen to have problems with your pituitary gland, hypothalamus or adrenal glands. My cortisol was low in 2020 when it was last checked, but the ACTH test result was normal, so I'm guessing I might have something going on with my pituitary gland. 😬 I'm planning to go see an endocrinologist when I have the money.


Senior Member
I do not know about a link between ME and hypoglycemia.

Low blood sugar can be a result of adrenal fatigue. I suggest the book on Amazon called Adrenal Fatigue: The 21st Century Stress Syndrome by James Wilson.

For my low blood sugar, I consume small amounts of sugar at regular intervals day and night. So long as I do this, I feel OK. Otherwise, I experience CFS and breathing problems.
Unfortunately I don't know if there's a link between ME and hypoglycemia, but after I contracted covid in Feb 2022 I've had worsening problems with carbs and something that looks like reactive hypoglycemia after I eat anything with too many carbs in it. I started keto diet almost four months ago and it seems to be helping. It also relieved my daily gastroparesis.

A friend gave me her old glucose meter and I've been checking my blood sugar before and after meals. So far it's been very stable at 5.2 mmol/l but I haven't been brave enough to try anything sugary yet (blueberries and a bit of pineapple with yogurt didn't cause problems even though they contain quite a bit of carbs).

I became ill with ME in 2008 but for the first 14 years I had zero problems with carbs (that I know of). But it's possible that I actually had hypoglycemic attacks, I just didn't recognize them.
Fight or Flight. Feel too bad to read entire post, but it can cause many of the symptoms, that come with hypoglycemia. Hope you find something to help you.


Senior Member

I have Type 1 Diabetes, so I have hypoglycemia occasionally (this is something all Type 1 Diabetics have problems with due to the disease/treatment). The blood glucose levels you have describe are VERY low, and your GPs doesn't seem to understand the severity of your situation. 1.1 mmol/L is a very dangerous level where you could become unconscious.

GPs generally speaking don't have the competence to investigate things like this, it sounds like you need a referral to an endocrinologist. There are a lot of different potential causes of hypoglycemia, see here.
My readings to date:

Hello Dr X

Noted/Confused about some readings as follows:

- have diabetic level of high blood sugar recently according to Google (?), and I didn't eat much to get that, and stress level was pretty normal for me which means I'm still stressed but it's daily regular stress reading 11.5 and 15.4. From 1 falafel wrap and HALF a MINI bottle of fruit juice read 11.5. This is LESS than the average person may eat for lunch, they would normally finish a whole bottle of fruit juice and may have crisps or chocolate bar or pastry?
Fruit crumble with icing sugar (rang out of sugar substitute) read 15.4. This is LESS than the average person may eat because this excludes any dinner. However if a dinner contained fibre then this reading may be lower. But dinners usually have potatoes or pasta or something to push this up higher.
- had small high carb meal and read 7 afterwards, as opposed to a crash, so I think we could rule out my low blood sugar being a carb problem?
- confused why I read 2.5 at 2:12pm and then 8 at 5:45pm with only drinking water and NO food in between. How can it jump to that with no food over that much time and my "regular" stress levels? This reading is before I've eaten anything, so how does it jump from 2:12 to 8 in 3 1/2 hrs?
- Here's another: 8 at 5.45pm immediately BEFORE I eat as I sometimes took these out of curiosity (1 chicken thigh and a small amount of risotto), and then LO reading after 2 hours - that's a big drop, no? But as I say below, the below list is only readings taken after 2 hours - this list below doesn't show dramatic shifts like this as this is omitted (sorry the text changed red and I don't know how to undo this!)

Readings to date:
As requested you asked for just the numbers. Obviously this doesn't factor in stress level, level of ME, or exercise level, or what I've eaten, which is the down side to just giving you numbers, but I understand it can seem more confusing to read with the extra info in a timeline - however the table is much better over view in my opinion to see the overall picture. Still you requested just the numbers so here they are in full to date. I have only included 2 hours after eating, none immediately before eating or immediately after eating:

7.3 (only 1 hr)
7 (carbs: pizza and chips reads normal. and previously eggs and bacon read low afterwards and they aren't carbs)

Obviously ME (and my emotional problems every day as I have ASD and BPD), cause great stress. Now stress increases blood sugar. So when I'm reading LO (below 1.1 on the glucose monitor) I am actually running stressed all day a lot of the time - and running LO reading at the start and end of the day too - and I don't eat enough. But the stress level should at least kick me above 1.1 you'd think with the chronic stress I've had lifelong, especially as ME is relentless every day causing stress?

On stress:
Many many years ago I asked the doctors about stress, they did 1 cortisol test (not several through the day), said it was normal. And when I contested about checking my adrenals as I'm really stressed every day (I had severe depression most of my life, break down including audio hallucinations and dissociation of being outside my body, severe not eating and inability to get up due to severe depression, this went on for years...), the GP said I didn't have a problem with my adrenals as it would show on that one cortisol test. Yet cortisol is high with stress and we know low with ME, especially in the mornings and cortisol tests are done first thing! I'm of the opinion there is no way they factored this in.

I'm not saying this is my sole problem from glucose readings being like this, but it is one such avenue I tried to get help with many years ago but I was dismissed.

Obviously continually not eating enough is another factor, and could be many other reasons.

Today I read online about "brittle" diabetic, aka variable glucose. This is actually considered a sub type or similar to Type 1 diabetic.

The doctors say I'm not diabetic as I don't show this on their tests. This is where the conversation ended when I asked for help as I crash after eating, until I persisted.

They said I had NO problems with my glucose levels after the tests they did, until I pushed for this to be relooked at, which as I say, is where I was given a monitor against the normal rules for a GP to provide one, just to check. So really I don't have much faith in the GP approach so far, as this was going to be missed!!! Missed at regularly being LO or low readings. Don't forget that the list given above does not include all the times I read low because they don't include the readings before meals, or upon wakening.

So either I'm hypo, with a few one off hyper moments (11.4) after eating a tiny amount of fruit juice and a falafel wrap only....

Or I'm a brittle diabetic that is actually swinging to the hypos more often, and is undiagnosed as diabetic, due to my poor eating/portion sizes smaller than an average person... so it is not picked up that I can rapidly swing. But then you'd expect it to be higher because of the stress I have daily. I need someone who is an expert to explain how I fit one category, and not the other. Right now I can't tell due to my eating habits.

As I say, it's not exactly clear just looking at this list of results above, because I've not put what my reading was just BEFORE I ate, what exercise I've done, what food I ate, what stress levels are at time of reading. All of this factors into the results. I have this instead on spreadsheets but the doctor said he just wants the numbers after I eat as looking at my exercise, what I ate, and stress, is confusing to see at a glance....

I think that approach is too simplistic (but easier for a GP with little time!) I'm no expert, but don't you need to factor all that in rather than just these numbers, to figure out what's going on.

Also getting readings of LO or 1.1 I really have no symptoms other than normal ME symptoms. Which can also be hypo symptom anyway. I don't get shaking or feeling like I'm going to faint. I do get extremely drowsy, extreme anger and irritability, hunger obviously, blurry vision and dry eyes, muscle pain, can sometimes feel nausea, feel very weak. But I can feel all that and read a normal glucose level too! And it is also ME (with other symptoms too).
Someone said that 1.1 can be dangerous, but I have read LO on many occasions, also not listed above, in all the data collected. And LO is below 1.1.