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Confusing Hypoglycaemic-like Symptoms Puzzle

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David_Jackson

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Hi there,

I’m completely new to the forum; this is my first post.

I don’t think I have Diabetes, but I do have Chronic Fatigue Syndrome (henceforth CFS). One of my symptoms is a very confusing hypoglycemic puzzle that I wanted to join a Diabetes forum to ask about. I figure that if anyone knows blood-sugar like the back of their hand it will be the Diabetics!

First of all, I want to give my Hba1C, which is 26mmol/mol. As far as I understand it, this is a good indicator that I do not have diabetes?

However, I do get strong symptoms of hypoglycemia, and have to eat every three hours. And zero minutes. Or else.

What I mean by that, is that around three hours since I started my last meal, I’ll start to feel weak. I’ll start getting agitated easily by things. I get a bit shaky. This is my cue to eat. If I leave it, the symptoms get worse, and it gets very intense. But, eating a meal completely fixes it, for another three hours at least.

What is so strange about this, is that when I measure my blood-sugar, the readings are not particularly low. Nor are they particularly high. As far as I am aware, and I could easily be wrong, they are in the normal ranges. Usually, I have to get up in the middle of the night to have a meal. However, I usually do manage to sleep for five hours straight. If I take a blood-sugar after this, it is usually around 90mg/dL (5.0mmol/L). Three hours after a meal, my blood-sugar can be anywhere between 90mg/dL and 120mg/dL (6.7mmol/L).

Hence, my main questions are:

At what levels would you expect my blood-glucose to be at to start experiencing these kinds of hypoglycemic symptoms?

At what blood-glucose level should I begin to get hungry at?

Does anyone have any theories about what could be going on with my insulin/blood-glucose levels?

Does anyone have any suggestions?

Not all people with CFS have this as one of their symptoms, but I have spoken to a few others who do have it. Thus far, I have heard a few different explanations for it, but want to ask around for more opinions.

Your thoughts would be very much appreciated.
 
Might be worth your while to have a read of the main threads in the reactive hypoglycemia area of the forum - maybe the information will ring some bells for you.
 
David_Jackson said:
Hi there,

1. First of all, I want to give my Hba1C, which is 26mmol/mol. As far as I understand it, this is a good indicator that I do not have diabetes?

What is so strange about this, is that when I measure my blood-sugar, the readings are not particularly low. Nor are they particularly high

2. At what levels would you expect my blood-glucose to be at to start experiencing these kinds of hypoglycemic symptoms?

3. At what blood-glucose level should I begin to get hungry at?

4. Does anyone have any theories about what could be going on with my insulin/blood-glucose levels?

5. Does anyone have any suggestions?

s
Click to expand...

1.Diabetes is a condition of high blood sugar. Hba1c of over 42 is indicative of diabetes. With a hba1c of 26, you are well within normal. It suggests your average blood sugar is 4.6, which is normal.

Do you test your blood sugar when you get theses symptoms? What is the result when you are experiencing theses symptoms?

2. Below 4mmol/L or 72 mg/dL

3. Blood sugar isn't the only thing that creates hunger. Nor is hunger always a symptom of low blood sugar.

4. If you have normal blood sugar readings and are euglycaemic throughout these episodes, perhaps they are not blood sugar related?

5. Eat little and often? Consider other causes - are you on medication? Have you had thyroid and hormone tests? Seek further investigation.
 
Hi @David_Jackson :)

Your HbA1C is normal :) If you're testing your blood sugar when you get these feelings and your results are in the normal range for blood sugar, then it's not hypoglycaemia by definition.

How long have you been testing your blood sugar? Is it just your symptoms that made you seek an HbA1C test, or do you have other reasons for worrying about diabetes eg close family with it, etc?

I don't think it's that unusual to need to eat regularly. I think some people do need regular and relatively frequent meals. I'd imagine that this might apply more if you're dealing with a condition like CFS.

I presume your doctor has done tests for anaemia and any vitamin deficiencies aswell as a general health screen to make sure all's in order?
 
It's not the cheapest option, but have you considered buying a Flash Glucose monitor (Libre is my 1st thought). For about £150, you will get everything you need to get 4 weeks of 24/7 blood glucose readings. Pair this with a comprehensive diary (what and when you eat and feel different symptoms), and I think you will get a full insight into exactly what is happening with your BG's, and allow you to either understand, or at least discount that area? Good Luck
 
Another thought is that a very high carb or high sugar diet can cause hunger. You do not have to go outside the normal range for blood sugar to be on the roller coaster. It might be that a more moderate carb diet might help. Something for you to research anyways. Good luck.
 
Wow, thanks for all the replies so quickly.

Good idea, @Indy51, about the reactive hypoglycemia posts, I’ll check them out.

@catapillar:

Yes, I have made sure to check my blood-sugar while I get these symptoms, and it is always within the rage of 90mg/dL and 120mg/dL. So that would suggest that I am getting hungry, and desperately hungry at that, while my blood-sugar is still quite high, correct?

I am on no medications.

Thyroid hormone levels seem to be within normal ranges. Unsure of other hormones.

Why do you think it is that eating corrects this problem? (for three more hours, at least)

One theory of Chronic Fatigue is that there are problems with cellular metabolism/respiration and energy production within the cell… thus you get very little energy for your glucose, essentially.

@azure:

Yes, it’s just symptoms of hypoglycemia, not actual hypoglycemia… so it would seem that the glucose can’t get into the cells, to make energy? But, why, then, does eating another meal fix the problem?

I don’t test my blood sugar that much. My doctor did the HbA1C test because I told her what I go through. No family with diabetes.

I’ve had these symptoms for about 6 years. At first it was just that I couldn’t skip meals, and my mood would swing all over the place. After some time, I caught a very bad virus, and never recovered, thus getting Chronic Fatigue. Then I needed 4 meals per day. When my CFS got really bad, I needed 6 meals per day. Now, after making gradual improvement, I am usually back to 5 meals per day.

These symptoms are tied in there together with the CFS, and I am trying to understand how. So thanks for helping me out with this.
 
I suggest you try testing your blood glucose every 15 minutes from when you start eating until you get your symptoms.

The following is pure speculation, and your tests will see if my guess is accurate:

Sometimes when we have particular 'glucose issues' (and there is a much wider range of 'glucose issues' than just standard diabetes, whether T1, 2, 3 or 1.5) our blood glucose can rise VERY quickly after eating, and then DROP very quickly after eating.

This can result in physical reactions like hypos, hunger, mood swings, etc. In this case, it isn't actually the blood glucose level that causes the symptoms, it is the SPEED of the rise and fall.

Another possibility (and this happens to me), is that the symptoms you are experiencing are the fight-or-flight adrenalin/stress reaction that your own body produces when your blood glucose drops too low. So that you aren't necessarily feeling the symptoms until AFTER your body has identified that your glucose is dropping, and has released the hormones that with trigger your liver to release glucose into your bloodstream. - and it is those hormones you are feeling, not the hypo itself.

If this latter suggestion is what is happening, then by the time you feel your symptoms and get your test kit out, your body has already taken care of the low blood glucose and would explain why your blood glucose is normal.

I second the suggestion to do a forum search on 'reactive hypoglycaemia'. Even if it doesn't resonate with you, I think you will find it an interesting read.

As mentioned above, a bit of systematic testing should prove (or disprove) my suggestions.

If you disprove them, then maybe looking at food intolerances, eating patterns (does it always happen after certain foods, or certain ingredients) might be things to look at.

Hope that helps.

Edited to add: We have had a lot of posters, T2 and Reactive Hypoglycaemics, who have found that their fatigue and low energy improve dramatically with (very) low carbing. I have no idea what you are currently eating, but that may be worth considering too...
 
@David_Jackson I wouldn't assume it was necessarily related to your blood sugar. If your blood sugar is moving up and down in a normal way within the normal range, then that should be reassuring for you.

The feelings you get could well be unrelated to your blood sugar. They could be due to other issues related to your illness. If you've found a system that works for you - regular meals - then that's great. Keep on doing what you're doing :)

I hope you're receiving all the support you need in coping with the CFS, and I hope your path to recovery isn't too long or too rough.
 
Wow, what an interesting post and responses! I'm going to side with what Brunneria said, on reading your first post my initial reaction was it may be the rapidity of the drop in BS that causes the symptoms regardless of the actual level and doing as she says regarding continuous testing and logging everything might shed some light.

One question though, you say you have a 'meal' every 3 hrs or so - what is it that you actually eat? Most diabetics would deal with a hypo by having some quick acting carbs (glucotabs, jelly babies etc) followed up by a slow acting carb food item such as a biscuit or the like, the quick acting carbs would alleviate the symptoms within a few minutes, what I class as a 'meal' wouldn't ;)

Could it be a physiological problem to do with the stomach? maybe when it's empty the body goes into this fight or flight mode causing a rush of adrenalin and the symptoms you suffer from. Ergo if you have small 'meals' do you get the symptoms more frequently?

I know nothing of CFS, but wish you well.
 
David_Jackson said:
Hi there,

I’m completely new to the forum; this is my first post.

I don’t think I have Diabetes, but I do have Chronic Fatigue Syndrome (henceforth CFS). One of my symptoms is a very confusing hypoglycemic puzzle that I wanted to join a Diabetes forum to ask about. I figure that if anyone knows blood-sugar like the back of their hand it will be the Diabetics!

First of all, I want to give my Hba1C, which is 26mmol/mol. As far as I understand it, this is a good indicator that I do not have diabetes?

However, I do get strong symptoms of hypoglycemia, and have to eat every three hours. And zero minutes. Or else.

What I mean by that, is that around three hours since I started my last meal, I’ll start to feel weak. I’ll start getting agitated easily by things. I get a bit shaky. This is my cue to eat. If I leave it, the symptoms get worse, and it gets very intense. But, eating a meal completely fixes it, for another three hours at least.

What is so strange about this, is that when I measure my blood-sugar, the readings are not particularly low. Nor are they particularly high. As far as I am aware, and I could easily be wrong, they are in the normal ranges. Usually, I have to get up in the middle of the night to have a meal. However, I usually do manage to sleep for five hours straight. If I take a blood-sugar after this, it is usually around 90mg/dL (5.0mmol/L). Three hours after a meal, my blood-sugar can be anywhere between 90mg/dL and 120mg/dL (6.7mmol/L).

Hence, my main questions are:

At what levels would you expect my blood-glucose to be at to start experiencing these kinds of hypoglycemic symptoms?

At what blood-glucose level should I begin to get hungry at?

Does anyone have any theories about what could be going on with my insulin/blood-glucose levels?

Does anyone have any suggestions?

Not all people with CFS have this as one of their symptoms, but I have spoken to a few others who do have it. Thus far, I have heard a few different explanations for it, but want to ask around for more opinions.

Your thoughts would be very much appreciated.
Click to expand...

There is a condition called idiopathic postprandrial syndrome.
It has all the symptoms you describe, this could be what is happening.
This is why you get hypoglycaemic episodes without actually having low blood glucose levels.
But you need tests and diagnosis to confirm this.
There is a thread on it on the reactive hypoglycaemia forum.
Also I would look in Wikipedia.

Though I could be totally wrong!
 
David_Jackson said:
@catapillar:

Yes, I have made sure to check my blood-sugar while I get these symptoms, and it is always within the rage of 90mg/dL and 120mg/dL. So that would suggest that I am getting hungry, and desperately hungry at that, while my blood-sugar is still quite high, correct?

I am on no medications.

Thyroid hormone levels seem to be within normal ranges. Unsure of other hormones.

Why do you think it is that eating corrects this problem? (for three more hours, at least)

One theory of Chronic Fatigue is that there are problems with cellular metabolism/respiration and energy production within the cell… thus you get very little energy for your glucose, essentially.
Click to expand...

90mg/dl (5mmol/l) - 120mg/dl (6.5mmol/l) isn't "quite high". They are perfectly normal blood sugar levels.

Blood sugar levels aren't the only thing that drive hunger. In fact, in general, people get hungry when they are euglycaemic, because most people maintain normal blood sugar all the time. Hunger is sometimes a symptom of low blood sugar, but it doesn't appear that you have any recorded instances of low blood sugar. That's why I think your hunger symptoms probably aren't related to your blood sugar.

Eating probably resolves the hunger because... Well, that's the point of eating, no? But I sympathise that the frequency and intensity of your hunger symptoms are causing problems for you.

Maybe if CFS causes a problem with efficient fuel use by the body you are just getting early warning signals? Idiopathic post prandi syndrome also looks worth looking into for you.
 
OK, finally I get time to respond. Firstly, I want to say thanks for all the replies, suggestions and theories; this kind of thing is the very reason I joined the forum, and I just knew there would be some brilliant people on here who could suggest some things. Now, my responses:

Yes, I will take a look at the Reactive Hypoglycemia posts, a very good suggestion.

@Brunneria:

Thanks for that, this is certainly a possibility. Actually, one other guy with CFS who has similar symptoms attributed them to something just like what you are describing. He had hyperinsulinemia, and the high insulin would cause his blood-sugar to drop suddenly, resulting in hypoglycemic symptoms. And yet his blood-sugar levels were normal... sounds a lot like me. He had his insulin levels tests with an endocrinologist. I had an appointment with one of them too, at one stage, but didn't have the energy to leave the house... that is the difficulty in getting things tested with CFS, especially when you are housebound or bedbound.

However, if the adrenaline and cortisol corrects the drops in blood-sugar, why do the hypoglycemic symptoms continue? That part is not quite adding up to me. If I were to test my blood-sugar levels every 15 min, do you think I would catch the drop, or could I still miss it? Would a monitor like @paulliljeros is suggesting, help with that?

To take it one step further, lets say your theory is correct, and it is dropping very fast... what to do about that? How to fix it?

@slip:

I'm vegan. So going very low carb is pretty much impossible for me, I think. However, almost all my meals are slow acting carbs, like beans and brown rice etc.

I'm not sure that the stomach is completely empty after three hours... but that is an interesting theory. But why would that be the case? I've never heard anything like it before.

@nosher8355:

Yes, I've heard of idiopathic postprandrial syndrome before... I agree, it does sound a lot like it. How could one fix this kind of thing?

@catapillar:

Sorry, but I don't quite understand... isn't the function of eating (mainly) to keep our blood-sugar good? What would happen for a normal person? Would they eat breakfast, and, then, after about 5 hours, what would their blood-sugar levels be when they started getting hungry for lunch? Would they be around 4mmol/L or 72 mg/dL, as you said above? In other words, wouldn't their blood-sugar going to that level trigger their hunger?

If that is the case, why would I desperately need to eat with a blood-glucose level of, say, 5 or 6mmol/L?

Once again, thanks for all the replies.
 
Maybe high metabolism partially part of problem? I've worked with a few people with similar symptoms normal glucose levels but feel low if not eating. Just eat a snack every few hours in between meals and do good. (Along with a healthy type of food higher protein moderate carbs. Help feel you up protein help with carbs and sugars) Would say its something to definitely see a doctor about and keep watch on.
 
David_Jackson said:
@catapillar:

Sorry, but I don't quite understand... isn't the function of eating (mainly) to keep our blood-sugar good? What would happen for a normal person? Would they eat breakfast, and, then, after about 5 hours, what would their blood-sugar levels be when they started getting hungry for lunch? Would they be around 4mmol/L or 72 mg/dL, as you said above? In other words, wouldn't their blood-sugar going to that level trigger their hunger?

If that is the case, why would I desperately need to eat with a blood-glucose level of, say, 5 or 6mmol/L?
Click to expand...

Hmm, yes keeping blood sugar stable is a function of eating. But with a "normal" person (you included because you appear to maintain euglycaemic all the time) what would happen when they eat breakfast would be is that their blood sugar would raise slightly in response to the food and they go back to a baseline level (which will be anything from 3.5 - 6.5). In periods when you aren't eating, your liver will trickle out its glucose stores to maintain blood sugar levels at the baseline so most people, even when fasting, won't drop noticeably below baseline. That's how most people don't need to get up in the night to eat - their blood sugar doesn't drop overnight. Nor does yours, apparently (from the numbers you have said), but it sounds like you are having to get up in the night to saitiate quite intense hunger, while your blood sugar remains stubbornly normal?

Sorry, I think breaking up all the questions has led to misinterpretation of the 4mml/72mg/dL levels. This is the level under which you are technically hypoglycaemic. So even with all the symptoms, if you aren't under 4, you aren't hypo. However, there are "false hypos" where someone has been running at unusually high levels and therefore gets hypo symptoms from coming down to normal levels. From your excellent hba1c I assume that this doesn't apply to you.

Falling blood sugar can be a cause of hunger. But it is not the only cause. Blood sugar dropping to 4 might cause hunger for some people, but equally many people maintain their baseline blood sugar level under 4 and aren't constantly hungry. I know that I experience hunger when my blood sugar is running flat. So I can only assume there is something other than blood sugar that makes me feel hungry.

I think from an evolutionary physiology point of view, it probably wouldn't make sense if we only got hungry when our blood sugar was so low as to trigger symptoms of hypo. We need to eat before it gets to that level to top up our liver glucose stores and maintain blood sugar levels - that's why there are other hormone triggers for hunger that aren't blood sugar related. To return to the first question, if the function of eating is to keep blood sugar good, we would need to experience hunger before blood sugar even thought about dropping.

Sorry, you probably think I'm being dismissive of your problem. I'm not, hypo symptom are horrible and if you are getting the symptoms, even though you are not hypo, that is still horrible. I can see why you are focusing on blood sugar as the answer, its obvious, it's simple, it's logical. But you have reported normal blood sugars, so that's why I think you are 90% to ruling out blood sugar as the cause. Testing every 15 minutes for a few hours would see if you can rule out any weird fluctuations in blood sugar and would probably be sensible because, obviously, you are engaged in your health and you are keen to get the right answer and resolve the issue.

I don't know why you desperately need to eat with normal blood sugars. From what you have said so far, your hunger symptoms don't seem to be blood sugar related and there may be other causes to look at. Perhaps something to do with CFS and metabolism or post prandial syndrome (but that is completely uninformed speculation on my part).
 
Hi again, without putting your questions in this reply.
Yes, we all need food, but it's not for glucose control.
Glucose is necessary for your brain to work properly.
But, like me, I get mine from my liver not carbs.
So, how do with live with very few carbs?
Well, what we do is eat only the foods that keep us in normal levels range, between 3.8 and 6.0 mmols. This is called being in ketosis.
I have reactive hypoglycaemia, this condition can be only treated by diet.
That is the only treatment for it, of course good exercise, (walking, swimming) is a benefit. Excessive exercise isn't, as my liver goes mad with more glucose which triggers insulin, too much insulin is bad for me.
Hyperinsulinaemia and similar metabolic conditions should be treated the same way, hyperinsulinaemia is one of the causes preceding T2 diabetes.
Yes, you can go very low carb being a vegan! You have to find out what foods you don't need to eat by testing with a monitor.
You will have to find out what your triggers are, that create the excess symptoms, it is usually carbs or sugars.
You can also get very similar symptoms because of big sudden drops in blood glucose levels. Fluctuating blood levels is usually referred to as a false hypo, but others get quick hypers then hypos because of what is medically called dumping syndrome. This usually happens within an hour.
In most similar conditions, hunger is the most irritating symptom and once you have got your diet low carb enough, it should disappear!
But as always with these conditions, only tests will you get a true diagnosis.
 
David_Jackson said:
@Brunneria:

However, if the adrenaline and cortisol corrects the drops in blood-sugar, why do the hypoglycemic symptoms continue?

To take it one step further, lets say your theory is correct, and it is dropping very fast... what to do about that? How to fix it?

@slip:

I'm vegan. So going very low carb is pretty much impossible for me, I think.

@nosher8355:

Yes, I've heard of idiopathic postprandrial syndrome before... I agree, it does sound a lot like it. How could one fix this kind of thing.
Click to expand...

:)

Taking your quoted points one at a time :)

- have you ever had a shock, or an accident or near - miss accident that has left you wobbly and weird-feeling for some time afterwards? I think most of us have. We always say 'it's the shock' don't we? Well actually, it isn't. It is the lingering after effect of huge amounts of stress hormones being dumped into the bloodstream. Can last for hours. This natural bodily response can leave us tired (maybe hungry) and shaking and (in my case) can affect energy levels and mood for days. When it was happening several times a day, it was EXHAUSTING. But I only realised it when I managed to get off the rollercoaster.

- how to fix a rapidly dropping blood glucose if you are a reactive hypoglycaemic: simple. Don't eat the foods that started the high blood glucose in the first place. For an RHer (as @nosher8355 has said) sending by up in the first place is what triggers the too rapid drop. So we test with a blood glucose meter to find those foods and stop eating them.

You mentioned brown rice as being slow release. You need to test that. It isn't slow release for me. And it causes horrible fast bg fluctuations for me. I can't even eat 2 tablespoons of brown rice without a high then a hypo low.

- we have vegan low carbers on the forum who do very well indeed. Have a look at the veggie section to see what they eat. I am thinking of @Avocado Sevenfold in particular, if you wanted to look for a specific person. Her food is delicious , varied and interesting - and low carb.

- you asked how to fix idiopathic postprandial syndrome? Well the only long term effective way that I know of requires dietary changes to avoid the food triggers that are causing it. Far better to prevent it happening than to constantly fight the consequences.

But please bear in mind, all of our comments and suggestions are speculative. Until you run those tests and see what is really happening to your blood glucose, these are just guesses.

Hope that helps.
 
My daughter in law has exactly the same symptoms as you feeling weak shaky and bit nauseous her doctor just said it was low blood sugar and she should eat something when she felt like that she does and always feels better. When my grandson was born he also had low blood glucose and spent a few days in the NICU until his blood glucose was normal. He is an adult now and just like his mother he also has the same symptoms when his blood sugar drops and has to eat something
 
@David_Jackson My advice would be to set aside all preconceptions that your problem is something to do with your blood sugar. You talk about "catching the drop" but you don't know yet if you even have a drop. If you focus your efforts too much on one theory, you may miss the real answer.

You've so far seen normal blood sugars - no highs, no lows.

You're suffering symptoms that are similar to hypoglycaemia but are not hypoglycaemia because they're not caused by low blood sugar (and are only a small part of the symptoms a hypo can cause)

Personally, I guess (and it's just a guess - none of us have medical qualifications) - it's to do with the release of certain stress hormones.

As @catapillar has mentioned, hunger doesn't exist to raise blood sugar. Your body keeps your blood sugar within a normal range irrespective of whether you eat or not. Hunger is caused by hormones like leptin and ghrelin.

Could your disturbed nights be contributing to the feelings of hunger? I know that people who work night shifts report greater feelings of hunger, and I know from my own experience that this is true. If you're not sleeping well, and your body is all out of whack, that could cause feelings of hunger, along with the hypo-like symptoms you describe which could be due to stress hormones as previously suggested.
 
OK: so I'm learning a lot by reading your replies, so thanks for all this.

I knew most of these individual things before, but you guys are helping my connect the dots and see how it all works together.

I knew there would be people on these forums who just knew the ins and outs of blood-sugar etc. so well, having been forced to figure it out. Thanks for sharing your knowledge.

And, yes, some more testing is required before a proper diagnosis can be established, in my case. But thanks for your speculations in the meantime ;)
 
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