Help ! Hypoglycemia coming back with a vengeance

[Dechi]

When I really started to grasp that there was something seriously wrong with my health, 3 years ago, I had hypoglycemia as one of my first symptoms. This is when I started being really investigated for various illnesses and was later diagnosed with me.

At the time, I had hypoglycemia for a few months - randomly, a few times. The shaky feeling, dizziness, general weird malaise, almost fainting. Then I learned to be careful and didn’t really had any more hypoglycemia episodes until today.

Of course I had forgotten about how it felt, because it had been so many years and it never happened that many times before anyways. So today I woke up and I was already a bit shaky, but that’s not unusual for me. Then I had some grooming to do on the dogs and I had to be really careful, because my hands were shaking. I pushed through it, thinking it was just my usual muscle weakness, just more pronounced.

But nope ! After grooming I went into the shower and felt so weird and dizzy I got out really quick in less than 1 minute. Then I lay down and asked my son for some sugar. I had not eaten yet, I always eat later in the morning. I also had a bit of watermelon and some Gatorade.

I felt better for a bit, than worse again and it was really an awful day. Even lying down I was awfully dizzy, had nausea and felt weak. It was scary and I felt so alone and helpless. My son was out but made sure I was okay by texting me and coming back mid-day.

I wonder if this is the consequence of a crash ? I have been doing more lately because I am moving soon and will start renovating the house before moving this week. I live alone so everything falls on my shoulders. I don’t do physical work, but it’s the project managing, calling the suppliers, the worrying that is exhausting me.

I don’t know how to deal with this symptom. Not even 100% sure it’s hypoglycemia, since I don’t have anything to check my blood and couldn’t drive to get it checked, I was too weak and dizzy.

If anyone has advice, knowing that I will be doing too much for a few more weeks (until the last week of July) because I don’t have a choice. Besides pacing that is. I will be pacing as much as I can. And I will be even more careful than usual. But still. I am scared !

 

[Little Bluestem]

The sugar, watermelon and Gatorade is quite a a bit of sugar without much protein or fat. This can bring your blood sugar up quickly, which causes the release of a lot of insulin, which brings your blood sugar back down. This could be why you felt better for a bit, then worse again.

To prevent hypoglycemia eat frequent, small meals with a mixture of complex carbs, protein, and fat. This will also produce a more steady energy supply for all of the things you will be doing. Good luck!

 

[Hoopoe]

If it gets better with eating it's probably hypoglycemia. Becoming very hungry during these episodes would also indicate hypoglycemia. That hands start shaking is consistent with hypoglycemia too.

I second the suggestion to eat small frequent balanced meals and to avoid consuming sugars alone, especially in the form of drinks.

Do not skip breakfast and try to do the most strenuous of your daily activites within a few hours of a meal.

 

[Ravn]

I wonder if this is the consequence of a crash ?

My glucose levels go haywire during PEM, both too high and too low, whereas at baseline my glucose is pretty stable. So yes, it's possible yours could be linked to crashing @Dechi.

Have you considered investing in a glucose meter? They're not too expensive though the cost of test strips varies enormously between brands. Or maybe you could borrow one briefly from a diabetic friend.

 

[adambeyoncelowe]

I get this when I don't eat regularly. I have to eat three meals a day like clockwork. Sugar makes it worse.

 

[Keela Too]

I have found that I don’t do well with sugar in my diet. I have largely cut out sugar and recently also most carb foods from my diet (I still eat veg - except root veg - so I still get fibre which is also technically a carb but human guts don’t digest it, so it’s fine for me).

It took a bit of time to adjust to this way of eating (mostly meat, eggs, butter, cheese, nuts, seeds, veg, salads, fish, chicken, berries, cream and of course tea and coffee with a little milk).

However this seems to keep my blood sugar levels more constant.

I had a nasty hypo a couple of years ago after eating a very sweet ice cream sundae on an empty stomach. The hypo hit about half an hour later and symptoms were as you describe along with a horrid “impending doom” sensation! I have avoided sugar since then.

I have also noted some restoration of stamina since starting this way of eating in April. I used some of the guidance on DietDoctor.com to help. I don’t know if this is just a quirk of my own, or whether I just had a Spring uptick, or whether this way of eating might help others too: it’s just something to consider in the general mix of self-help tactics we all attempt. Xx

 

[Ryan31337]

To prevent hypoglycemia eat frequent, small meals with a mixture of complex carbs, protein, and fat. This will also produce a more steady energy supply for all of the things you will be doing. Good luck!

This advice serves most people well but as @Keela Too mentions, it is sometimes not appropriate depending on the cause of the hypo.

My experience was much like this, to begin with the hypo symptoms were mild and only induced after lots of sugar or a meal unbalanced towards carbs - probably just a response on the edge of the healthy person curve. Over time the symptoms became more significant and the quantity of carbs required to trigger this reactive hypo became less. Naturally I'd reach for more and more carbs to 'fix' the hypo, which often just precipitated another reactive hypo. It was not caused by lack of food or by diabetes.

I think the important thing to do is understand if the hypo is caused by a simple lack of food, or if it is caused by something more sinister. Your GP will exclude diabetes fairly easily in most cases, but won't have a clue regarding reactive hypos. There are many possible causes and you probably need to see a good Endo to get to the bottom of it.

Personally I would track meal carb count & timing of your hypos in relation to food intake to see if there is correlation, going very low carb might be the easiest solution. The reactive hypo issue is well recognised by good dysautonomia doctors, with theories of inappropriate insulin release & gastric dysmotility being common causes. I didn't have motility studies unfortunately, but I did have a number of other GI symptoms alongside the reactive hypos, all of which resolved by increasing fat intake and decreasing carbs significantly, which would seem to suggest I had rapid gastric emptying going on as a cause.

 

[Ryan31337]

I have also noted some restoration of stamina since starting this way of eating in April. I used some of the guidance on DietDoctor.com to help. I don’t know if this is just a quirk of my own, or whether I just had a Spring uptick, or whether this way of eating might help others too: it’s just something to consider in the general mix of self-help tactics we all attempt. Xx

You're not alone, I see a significant reduction in PEM severity and recovery time when eating very low carb. Another nice bonus on top of having consistent energy through the day

More objectively my repeat CPET results improved quite a bit too, with VO2max increasing by about 25%

 

[Keela Too]

You're not alone, I see a significant reduction in PEM severity and recovery time when eating very low carb. Another nice bonus on top of having consistent energy through the day

More objectively my repeat CPET results improved quite a bit too, with VO2max increasing by about 25%

Very interesting. I haven’t had as many tests as you, but PEM is less horrid now (& with shorter duration consequences) and I get less out of breath doing stuff! Not a cure, I still need to pace carefully, but it is so worth the effort of eating weird!

 

[Dechi]

The sugar, watermelon and Gatorade is quite a a bit of sugar without much protein or fat. This can bring your blood sugar up quickly, which causes the release of a lot of insulin, which brings your blood sugar back down. This could be why you felt better for a bit, then worse again.

To prevent hypoglycemia eat frequent, small meals with a mixture of complex carbs, protein, and fat. This will also produce a more steady energy supply for all of the things you will be doing. Good luck!

Yes, I can see now that this was too much sugar. We were caught off guard, not knowing what to do.

If it gets better with eating it's probably hypoglycemia. Becoming very hungry during these episodes would also indicate hypoglycemia. That hands start shaking is consistent with hypoglycemia too.

I second the suggestion to eat small frequent balanced meals and to avoid consuming sugars alone, especially in the form of drinks.

Do not skip breakfast and try to do the most strenuous of your daily activites within a few hours of a meal.

I like to eat breakfast around 10, and usually just rest before eating. That day I did a bit of work, not much, but it was too much for my capacities. This morning I made sure to eat early!

My glucose levels go haywire during PEM, both too high and too low, whereas at baseline my glucose is pretty stable. So yes, it's possible yours could be linked to crashing @Dechi.

Have you considered investing in a glucose meter? They're not too expensive though the cost of test strips varies enormously between brands. Or maybe you could borrow one briefly from a diabetic friend.

I did consider it 3 years ago. It’s about 150$ for the meter + strips I think. I will definitely get one if it happens again.

I get this when I don't eat regularly. I have to eat three meals a day like clockwork. Sugar makes it worse.

I always eat three meals too. I’ve not been eating well lately, unfortunately. Lots of sugars and bad fat.

I have found that I don’t do well with sugar in my diet. I have largely cut out sugar and recently also most carb foods from my diet (I still eat veg - except root veg - so I still get fibre which is also technically a carb but human guts don’t digest it, so it’s fine for me).

It took a bit of time to adjust to this way of eating (mostly meat, eggs, butter, cheese, nuts, seeds, veg, salads, fish, chicken, berries, cream and of course tea and coffee with a little milk).

However this seems to keep my blood sugar levels more constant.

I had a nasty hypo a couple of years ago after eating a very sweet ice cream sundae on an empty stomach. The hypo hit about half an hour later and symptoms were as you describe along with a horrid “impending doom” sensation! I have avoided sugar since then.

I have also noted some restoration of stamina since starting this way of eating in April. I used some of the guidance on DietDoctor.com to help. I don’t know if this is just a quirk of my own, or whether I just had a Spring uptick, or whether this way of eating might help others too: it’s just something to consider in the general mix of self-help tactics we all attempt. Xx

Yes, the impending doom was very present yesterday. It made me feel panicky.

I used to be very careful of what I ate and did not eat gluten, lactose, refined sugar and too much carbs. I even did the paleo diet a while ago. Those low carb diets really make me feel better. Lately I’ve been really stressed, and bored because I can’t do much and I am mostly housebound, and I found comfort in eating junk food and sugary foods in large quantities.

This might be the root of the problem. I need to go back to my good habits. The problem is always the same, I don’t have energy to prepare food and I don’t know what to eat. I look for an easy fix, find nothing so I go the easy route.

This advice serves most people well but as @Keela Too mentions, it is sometimes not appropriate depending on the cause of the hypo.

My experience was much like this, to begin with the hypo symptoms were mild and only induced after lots of sugar or a meal unbalanced towards carbs - probably just a response on the edge of the healthy person curve. Over time the symptoms became more significant and the quantity of carbs required to trigger this reactive hypo became less. Naturally I'd reach for more and more carbs to 'fix' the hypo, which often just precipitated another reactive hypo. It was not caused by lack of food or by diabetes.

I think the important thing to do is understand if the hypo is caused by a simple lack of food, or if it is caused by something more sinister. Your GP will exclude diabetes fairly easily in most cases, but won't have a clue regarding reactive hypos. There are many possible causes and you probably need to see a good Endo to get to the bottom of it.

Personally I would track meal carb count & timing of your hypos in relation to food intake to see if there is correlation, going very low carb might be the easiest solution. The reactive hypo issue is well recognised by good dysautonomia doctors, with theories of inappropriate insulin release & gastric dysmotility being common causes. I didn't have motility studies unfortunately, but I did have a number of other GI symptoms alongside the reactive hypos, all of which resolved by increasing fat intake and decreasing carbs significantly, which would seem to suggest I had rapid gastric emptying going on as a cause.

Yes, I agree with the diet. I will get back on track. I’ve been tested for everything 3 years ago by an endocrinologist. There is no sigh of diabetes in me. Nothing wrong. I do have neurally mediated hypotension though. And ME. So I guess that’s my problem.

I will talk to my doctor about this at my next appointment. She’s a resident so more open-minded that many older doctors.

 

[Dechi]

I forgot to mention I had a lot of nausea too. Is this a sign of hypoglycemia as well ?

 

[MeSci]

I forgot to mention I had a lot of nausea too. Is this a sign of hypoglycemia as well ?

Yes, it can be.

There was a programme on UK radio yesterday about too much sugar in food - I had to cut down drastically a few years ago.

See https://www.s4me.info/threads/uk-radio-programme-on-high-carbohydrate-foods.4852/

 

[Ryan31337]

Yes, I agree with the diet. I will get back on track. I’ve been tested for everything 3 years ago by an endocrinologist. There is no sigh of diabetes in me. Nothing wrong. I do have neurally mediated hypotension though. And ME. So I guess that’s my problem.

Best of luck with the changes, I hope they help again. The NMH would put you in an OI category, where many of us are overly sensitive to carbs.

Do you know what investigations you had before? It seems that a prolonged (4hr) glucose challenge + insulin monitoring in hospital is needed to really rule out reactive hypos. Experienced Endo's also tend to recommend a mixed meal challenge rather than glucose too if gastric motility issues are suspected. The run of the mill investigations from regular Endo's will probably fall way, way short of this as reactive hypoglycemia isn't really considered an issue in the mainstream unless you've had bowel surgery or something obvious - thankfully the OI literate ones do appreciate the significance.

 

[Dechi]

Best of luck with the changes, I hope they help again. The NMH would put you in an OI category, where many of us are overly sensitive to carbs.

Do you know what investigations you had before? It seems that a prolonged (4hr) glucose challenge + insulin monitoring in hospital is needed to really rule out reactive hypos. Experienced Endo's also tend to recommend a mixed meal challenge rather than glucose too if gastric motility issues are suspected. The run of the mill investigations from regular Endo's will probably fall way, way short of this as reactive hypoglycemia isn't really considered an issue in the mainstream unless you've had bowel surgery or something obvious - thankfully the OI literate ones do appreciate the significance.

I checked my test results. The test lasted about 1 1/2. They injected 1mg of controsy in my vein. They got 1 measure before and 3 measures after, at different times. This was to assess my surrenal glands, it seems. Does this have anything to do with reaction to insulin ? Those results were within normal values. They also checked other variables like vitamin D and others, normal also.

To check my glycemia, they sent me home with needles to prick myself with when I had symtpoms, and once when I had none. Then I had to bleed on this sheet every time I pricked myself. I then returned the sheet tp the hospital, filled with about 8-10 episodes with blood. It took about 2 months before I had the results, and apparently everything was normal. They compared the symptom pricks with the non-symptom one. I always wondered how they could check glycemia with 2 months old dried blood?

Then maybe I was never properly tested ?

And since I was fasting yesterday morning, can it still be considered reactive hypoglycemia ?

 

[Ryan31337]

I'm not 100% clear on what you have written, perhaps some auto-corrects are not helping. It sounds like they did a ACTH stim test to exclude adrenal insufficiency, which is not an investigation of blood glucose.

The finger prick spot testing you performed was a direct investigation for blood glucose, unfortunately though it very rarely captures anything wrong in cases of reactive hypo. Our glucose changes are exaggerated but self-correcting, hence the need for a glucose tolerance test in hospital with accurate monitoring. Doctors aren't taught this it seems, its only the OI-literate endo's that understand these nuances and perform the right tests. It sounds as though you had the generic unhelpful ones and were put in the 'nothing wrong, just a healthy outlier' category.

There's no consensus on what is actually happening though. I've heard explanations of our hypo symptoms (i.e not a 'real' hypo because its transient) as due to exaggerated and rapid shifts in glucose level (gastric motility often at play), and/or improper insulin release (general dysautonomia), and/or exaggerated counter-regulatory mechanisms (adrenaline overload in OI, especially POTS).

To be reactive hypo it would be happening within about 4 hours of eating normally (excluding some crazy things that can happen with gastroparesis etc.). If you were fasting at the time of onset it was unlikely to be reactive, though the improvement and then later worsening you experienced after consuming sugar & gatorade may have been reactive. Before I changed my diet I would also get some odd spontaneous hypo symptoms at around 6am quite regularly, often in conjunction with other symptoms suggesting a histamine surge. This again is really common in the OI & especially MCAS/EDS/POTS groups - clearly some overlap there.

I wouldn't worry too much about further investigation unless the hypos keep coming every day, despite switching to a balanced diet, low in sugar.

 

[Dechi]

@Ryan31337 sorry if what I’m writing is unclear.

You’ve been very helpful. I will be more careful with my diet for sure from now on. This episode was everything but fun. I had an awful night as it took me more than 3 hours to fall asleep and woke up early.

Today I’m still paying for it. Lesson learned the hard way, as many are !

 

[Ryan31337]

Glad I could help.

Yes, I think the effects of these episodes are incredibly draining and that fact perhaps isn't well enough recognised. The same goes for OI episodes (prolonged standing aggravating POTS, syncope/near syncope from NMH etc.), they really take their toll later in the day & again during the night/dawn in my experience. If you're getting them every day they can really wipe you out.

 

[Ravn]

I've heard explanations of our hypo symptoms (i.e not a 'real' hypo because its transient) as due to exaggerated and rapid shifts in glucose level (gastric motility often at play), and/or improper insulin release (general dysautonomia), and/or exaggerated counter-regulatory mechanisms (adrenaline overload in OI, especially POTS).

Some very interesting posts @Ryan31337.

Do you happen to have any research or other links regarding connections between POTS/dysautonomia, gastric dysmotility and/or glucose dysregulation?

Have just recently been speculating about possible connections there myself.

Was diagnosed some years ago with slow intestinal transit (no cause found but bad enough that the gastro recommended removing most of my large intestine, which I refused).

Have never been tested for gastric dysmotility, and now too ill to travel for any testing. However, I've developed symptoms suggestive of gastroparesis (slow gastric emptying) and it seems a reasonable assumption that if the intestines are too slow, likely as a result of dysautonomia, then the stomach could also be affected.

To complicate matters, since then I've also developed symptoms suggestive of dumping syndrome (rapid gastric emptying, usually linked to gastric surgery which I've never had).

In other words I suspect I now have alternating slow and fast emptying – at least that's my personal theory. Would be very interested to know if that is actually possible???

It is shortly after what I suspect is a dumping episode that my glucose first spikes and then crashes.

 

[Ryan31337]

Hi @Ravn,

Yes, I think your theory is possible, perhaps even likely with a background of POTS, I have had a very similar experience.

I've been ill for decades but approx. 2 years ago everything became much worse with frequent unexplained crashes throughout the day and night like clockwork & other symptoms suggestive of poorly regulated blood glucose (but not diabetes). Fortunately my Cardiologist recommended an OI-literate Endocrinologist and he recognised the reactive hypo pattern and suspected it was dietary related (underlying dysmotility).

At that time I had flip-flopping symptoms that matched either early rapid gastric emptying (early dumping) or delayed rapid gastric emptying (late dumping). Both involved a lot of tachycardia, sweats, orthostatic intolerance and feeling bloody awful. When early dumping there was more stomach pain and diarrhoea, when late dumping there was hunger, vision blur & extreme sleepiness - to the point that I was actually tested for narcolepsy...

Thankfully the Endo recommended a very effective workaround for this problem: ketogenic diet. The high fat slows the dumping and the very low carbohydrate minimises the impact to your blood glucose. Within a week the daily crashes had stopped and I had so, so much more energy. Other seemingly related issues improved like the poor eyesight, excessive thirst & urination, discoloured skin folds, fat around middle, poor liver function tests etc.

Unfortunately, as you probably know, a high fat diet can be a bad thing if gastroparesis becomes predominant. I am concerned that may be an issue for me now as I am having spells where I struggle to finish a plate of food due to immediate fullness and bloating, though my problems are compounded by SIBO/dysbiosis/histamine intolerance (often hand-in-hand with dysmotility) so I'm not really sure what is causing what now.

Anyway, I think you will find this video incredibly useful:


I am awaiting a referral to this guy now. He is considered the main man in the POTS/hypermobility circles for GI problems. The presentation references several POTS rapid gastric emptying studies if memory serves.

Cheers,
Ryan

 

[Ravn]

Excellent informative video @Ryan31337. Thanks for posting.

Found this document which contains many of the slides used in the video, only an easier size to read:

http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf

Would be very interested to hear how you get on with your consultation with Dr. Aziz.

If you have the occasion during your consultation could you quiz him on alternating slow and rapid gastric emptying, seeing you're having this issue yourself anyway? In both the video and in the document it's either – or. And, as we've both found out, what helps for rapid emptying actually worsens slow emptying, e.g. high fat meals, so some management tips for dealing with flipping between the two would be great.

I've progressed from being all slow to occasionally having a couple of days of dumping then back to slow. Then I began flipping between fast and slow from one meal to the next. Now it feels like I'm dumping the first half of the meal and then my stomach gets the message it's being too fast and overreacts and clamps shut so the second half of the meal stays stuck in the stomach for hours. Sometimes I can't get any more food or drink down until the next day. Which is a bit of an issue if I'm having a nasty reactive hypo from the initial dumping event. Haven't really found a way of managing this apart from holding a tiny bit of oral glucose in my mouth if I'm getting close to passing out from the hypo, not too much as I don't want to spiral back into too much glucose triggering even more insulin release triggering another hypo... (plus not used to too much glucose, normal diet is not-quite-keto-low-carb).

Also, this article has a lot of links to gastric emptying research, incl. a few relating to dysautonomia and at least one mentioning CFS (haven't looked at them yet): http://www.nutrientsreview.com/articles/gastric-emptying.html