Is HYPOglycaemia common in ME/CFS sufferers?

[Kenny Banya]

Just wondering from forumites

 

[halcyon]

Yes very.

 

[SB_1108]

For me... yes severe hypoglycemia everyday for +7 years! Nothing helps, other than eating.

 

[Dechi]

I have it very occasionnally. More in the beginning, when I didn't understand what was happening to me and I was still trying to push through it and going over my energy envelope.

 

[bertiedog]

This was one of my early worst symptoms which I couldn't control. However since being steroid dependent and also taking natural thyroid hormones for over 13 years I only get it now if I don't eat immediately after exercise. It is hugely improved.

Pam

 

[David Jackson]

I do have symptoms of hypoglycemia, which leaves me needing to eat every three hours approx.

However, it is very interesting that when I actually measure my blood sugar levels, even during these 'hypoglycemic' episodes, my blood-sugar levels are great, and do not reflect how I feel at all. Blood tests also show that I am non-diabetic.

I was scheduled to see an endocrinologist at one point, but when the appointment came around, I didn't have the energy to leave the house anymore, and had to cancel it. I am assuming that my 'hypoglycemia' is a result of messed up hormone levels, due to my CFS.

One theory that I have heard suggested to me is that the liver could be messed up/out of balance in some way, and this could be messing with blood-sugar levels (or perhaps just with hunger) when it is meant to be releasing more glucose into the bloodstream, but this is not quite happening properly.

Another theory I have heard, is that my 'hypoglycemia' could be the result of hyperinsulinemia - too much insulin in the bloodstream. It could be that, for some reason, my insulin release gets over-compensated, and a large amount of insulin causes a sharp drop in blood-sugar, triggering intense hunger. One diabetic said to me that I might need to get some kind of diabetic-blood-sugar-monitoring device to capture the sudden drop, as it could happen that fast that I would otherwise miss it.

Another theory that was suggested to me is that these 'hypoglycemic' symptoms don't really have anything to do with insulin and blood-sugar levels, but are bought on by other hunger-inducing hormones that are messed up for some reason.

More research needs to be done on my part to get to the bottom of it; at the moment, though, I am noticing improvements to my 'crazy hungriness levels' as my health and energy improve. Things all around have improved for me a lot over the last few months. So I am not in such a great rush to see an endocrinologist about this problem.

I'd be very interested to hear from anyone else with CFS and hypoglycemic symptoms who also measures their blood-sugar levels. I'd also be interested to hear of any other theories that people have on what may be causing this.

 

[ryan31337]

Hi @Kenny Banya,

I think fluctuating blood sugar levels would be a more appropriate description for me, my symptoms would seemingly swing between both Hyper and Hypoglycemia (no diabetes diagnosis, all fasting BG tests normal) - I'd get a little shaky when fasting but the vast majority of problems were postprandial.

In healthier times it would present as inappropriate thirst, hunger & sweating, usually when I had exercised or was experiencing PEM. Only recently had it become particularly overt again with a decline in general health, the symptoms expanded to include chills, palpitations/tachy, anxiety, migraine, blurred vision, paresthesia, significant cognitive issues, sleepiness/food coma etc. etc. At this point it wasn't possible to reliably keep these symptoms away with regular small meals (especially as I'd get hypos in the night).

I saw an endo who immediately recognised it as reactive hypoglycemia and put me on a ketogenic diet, this has worked fantastically for me. Although no testing was performed to prove it, the general theory was described to me as having a delayed insulin response leading to hyperglycemia, followed by a large insulin spike that drives BG too low and subsequently triggers adrenergic counterregulation. I'm sure this is massively oversimplified, I have impaired liver function, autonomic & gut problems which could all factor, but it fit my general experience at least.

@David Jackson, I monitored BG a little at home but never caught anything massively out of range. From what I gather consensus is that its very hard to spot these swings on random tests using basic equipment.

 

[Invisible Woman]

I experienced this a lot - especially earlier on when I had no clue how to manage the condition. I am not diabetic and have no obvious liver function abnormalities. I do tend to be low in the elements manganese and chromium which help control blood sugar. So I take a supplement which contain both of these.

Otherwise the best way I have found to control it is: avoid sugar (including fruit juices - just eat the fruit instead), avoid refined carbs, spread whatever carbs I'm having throughout the day, eat regularly, make sure I drink enough fluids (mainly water) and pace myself.

When I go out anywhere I usually have a snack about my person and a bottle of water.

 

[Valentijn]

A lot of people report symptoms of hypoglycemia, but I'm not aware of it being at all common for ME patients to actually have low blood glucose levels. It certainly hasn't been shown to occur in scientific research.

I suspect a lot of people are making incorrect assumptions based solely on symptoms. I tested my own levels (fiance is diabetic so I have the proper equipment) intermittently when feeling cruddy, and my glucose levels were always normal.

 

[Sandman00747]

I have had these hypoglycemic feelings off and on for years. Interestingly, I often had access to measuring my blood glucose and it was always in range even when I would have bet my last dollar that it would have been low from how I was feeling, extremely hungry, slight shakiness, etc.

I don't have diabetes or even any degree of metabolic syndrome. I think Invisible Woman is right in staying away from sugar as I often got this after eating anything sugar laden anytime during the day or night. Somehow our bodies have lost some degree of control in handling any kind of food with much sugar in it. Though I mostly avoid sugar these days, I believe my body handles sugar much better than in the early days of this disease.

The more I think about it I can't think of any biological function that this disease hasn't messed up in my body at some point in time!

 

[PatJ]

I have to eat every two hours during the day. It used to be every 1h 20minutes. I think adrenal supplements, and liposomal vitamin c (good for adrenals) have helped to increase the duration between meals.

Hypoglycemia has influenced my sleep wake cycle: my blood sugar starts to drop at around 4:30am so I get up at 4am and eat by 4:20. Since my blood sugar is fine from 7pm onward, that's the time I go to bed. The few times that I have tried to sleep through a low blood sugar episode I have woken up feeling dismal and felt as if I have brain damage for the rest of the day.

If you get regular low blood sugar episodes then it's important to figure out the timing and eat before your blood sugar starts to drop. A low blood sugar episode sets off a cascade of reactions in the body that will continue for some time even after you get your blood sugar back up, so it's important to head off that reaction to reduce the significant bodily stress of a low blood sugar episode.

If you think your hypoglycemia may be related to adrenal fatigue then avoid chocolate because "chocolate is high in caffeine and a caffeine-like substance, theobromine, that over stimulate the adrenals leading to further adrenal fatigue."

I have impaired liver function

Have you ever looked into using the combination of ALA, Selenium, and Silymarin? If you Google "Dr. Berkson ala" you'll find a lot of info. His treatment was used for many forms of impaired liver function.

I monitored BG a little at home but never caught anything massively out of range. From what I gather consensus is that its very hard to spot these swings on random tests using basic equipment.

Most experts in hypoglycemia consider the range to be less important than the speed that blood sugar drops. Blood glucose ranges are standardized but don't apply to everyone (just like blood test ranges). One person can have super low blood glucose but feel fine, another can be in the upper part of the standard range and feel terrible.

Home glucose meters can also be very inaccurate. When I was testing my blood glucose I wondered how accurate the meter was. I started doing three tests at once and found that I could have a value of 3.5 (low) on one reading, and 4.5 (normal) on another. A full point difference is significant.

I know I'm going through hypoglycemia or a hypoglycemia-like episode because food resolves the symptoms within minutes, and prevents the onset of symptoms now that I've figured out the timing.

I do tend to be low in the elements manganese and chromium which help control blood sugar. So I take a supplement which contain both of these.

It's interesting how different we can be in our responses. When I first read about hypoglycemia I started taking chromium. Within two days I could barely move because I had so little energy. I think the chromium pushed my blood sugar too low and kept it low.

 

[Invisible Woman]

It's interesting how different we can be in our responses. When I first read about hypoglycemia I started taking chromium. Within two days I could barely move because I had so little energy. I think the chromium pushed my blood sugar too low and kept it low.

We all vary so much. I am assuming you added a supplement without testing first @PatJ - forgive me if I am incorrect. This can cause additional problems. I should have said: after testing by a medical professional showed my levels of chromium and manganese to be low, I added the supplement they recommended.

 

[PatJ]

I am assuming you added a supplement without testing first

Yup, no testing. I just went for the recommended dose because it was supposed to help with hypoglycemia symptoms. This was several years ago, before I realized just how sensitive I am to some supplements and medications. I favor the start low and go slow approach these days.

 

[ryan31337]

Hi @PatJ,

Have you ever looked into using the combination of ALA, Selenium, and Silymarin? If you Google "Dr. Berkson ala" you'll find a lot of info.

Thanks for the tip, i'll look into them if LFTs go sideways again. My last test saw bilirubin and ALT at almost normal range again for the first time in years - my endo feels it may have been fatty infiltration that is now rectifying on the ketogenic diet. Unfortunately at their worst before the dietary change I didn't see them exceed more than 2-3 times normal range, so I couldn't get a liver specialist to pay any attention or do an ultrasound on the NHS. I have had malabsorption problems (coeliac) in the past and this is known to contribute to NAFLD so I'm hoping its just that...

Hypoglycemia has influenced my sleep wake cycle: my blood sugar starts to drop at around 4:30am so I get up at 4am and eat by 4:20. Since my blood sugar is fine from 7pm onward, that's the time I go to bed.

This is something my POTS specialist has noted as common with his patients. It's interesting because it doesn't quite fit with the postprandial hypo theory at that time - certainly not for you if you went to bed at 7pm and hadn't eaten since then. So I guess you're into hormonal fluctuation explanations instead. For me it was harder to separate them as I would eat right before bed, so 4am was just about within the 4hr postprandial limit (as if everyone is the same!).

If you get regular low blood sugar episodes then it's important to figure out the timing and eat before your blood sugar starts to drop. A low blood sugar episode sets off a cascade of reactions in the body that will continue for some time even after you get your blood sugar back up, so it's important to head off that reaction to reduce the significant bodily stress of a low blood sugar episode.

Fully agree. It would appear hypos (the adrenergic counterregulation part?) can trigger mast cells. Smoothing out BG swings have helped a great deal with my suspected MCAS over-reactivity. Not to mention being a reliable trigger of migraine that'd last way past the hypo and ruin the day...

Have you given any thought to a keto diet as a means to avoiding the BG swings, @PatJ?

 

[PatJ]

Have you given any thought to a keto diet as a means to avoiding the BG swings

I tried going low-carb at one point a couple of years ago (not a full ketogenic diet) and was exhausted. Also, I'm very underweight. Without carbs I drop weight like crazy (as in, a pound every day, even when eating lots of protein and fat). I've recently drastically increased my carb intake and am finally gaining weight for the first time in years.

My hypo episodes might be due to disregulated cortisol from having weak adrenals. If my cortisol is too low during the day then it could cause hypo episodes, and then if it rises for the night then I have enough to keep my blood sugar stable but the high cortisol causes poor sleep (which I manage with various supplements and LDN.) I'd like to get my cortisol tested at some point but can't even leave the house due to OI and lack of a doctor at the moment.

 

[drob31]

I would be willing to bet the hypoglycemia is due to fluctuating cortisol levels.

Under stressful conditions, cortisol provides the body with glucose by tapping into protein stores via gluconeogenesis in the liver.

Since everyone is under constant stress from having CFS, I think it's say to say the HPA-axis is off, and can't provide glucose fast enough, and having liver issues would make this worse.

 

[caledonia]

Hypoglycemia is a symptom of adrenal fatigue and both of those are symptoms of mercury toxicity.

My longstanding hypoglycemia improved some time after getting my last mercury filling out. Now that I'm chelating, it's come back again. It should go away eventually once I get enough mercury out.

In the meantime, it's helpful to eat balanced meals and snacks about every 3 hours or whenever I can feel my blood sugar dropping. Balanced means it consists of real food, nothing processed. No sugar, or hypoglycemic carbs like fruit juice. It contains a balance of protein, carbs and fat. This is basically the Zone Diet.

 

[bertiedog]

This is basically the Zone Diet.

I agree with you but for me the Zone diet has just a bit too much carbohydrate. I do well with my diet being about 55% fat and only 20 % or so of carbs.

Pam

 

[ryan31337]

I tried going low-carb at one point a couple of years ago (not a full ketogenic diet) and was exhausted. Also, I'm very underweight. Without carbs I drop weight like crazy (as in, a pound every day, even when eating lots of protein and fat).

Low carb sounds like hell. If I drop out of ketosis even briefly (usually because i've eaten too much protein and not enough fat) I lose all the benefit, its all or nothing for me. I'm glad you're getting weight back now! If you were to try you may find the weight loss stabilises after you've finished adaptation, I pee'd/burnt off 5kg in 2 weeks when I started it but have now put a kilo or 2 back on with BMI of 22.

My hypo episodes might be due to disregulated cortisol from having weak adrenals. If my cortisol is too low during the day then it could cause hypo episodes, and then if it rises for the night then I have enough to keep my blood sugar stable but the high cortisol causes poor sleep (which I manage with various supplements and LDN.)

Sounds familiar. My 9am cortisol was always out of range high, unfortunately I didn't get to see it at other times during the day

 

[PatJ]

Hypoglycemia is a symptom of adrenal fatigue and both of those are symptoms of mercury toxicity.

Adrenal fatigue is also related to high stress lifestyles, excess sugar and refined foods that stress the adrenals with sugar spikes and associated extra insulin to compensate, and internal stresses such as the disregulated HPA axis as found in CFS/ME. I'm not arguing against mercury toxicity, just pointing out other possible causes.