I keep having hypoglycemic symptoms without actual low blood sugar ?

[NJ1996]

I keep having hypoglycemic symptoms with normal blood sugars I'm not sure why ? I've even been to an endrocrinologist and she couldn't even figure out what was wrong with me. It's so weird and when I start to have these hypoglycemic symptoms I have stabbing flank pain on my right side it feels really sore and hurts. I'm seeing this new doctor and she thinks that I might have tumors on my pancrease or adrenal glands so I have to get an mri. I've even changed my diet and seen a nutritionist it's awful because nothing works. I wake up with night sweats my body aches I get dizzy and have headaches.

 

[halcyon]

You may want to ask for a 24 hour urine catecholamine test. Your body releases these when your blood sugar drops and that's part of what causes the feelings associated with hypoglycemia. A pheochromocytoma (the adrenal tumor your doctor is talking about) can also cause excessive release of these.

Do you have any orthostatic intolerance symptoms as well?

 

[Comet]

I keep having hypoglycemic symptoms with normal blood sugars I'm not sure why ? I've even been to an endrocrinologist and she couldn't even figure out what was wrong with me. It's so weird and when I start to have these hypoglycemic symptoms I have stabbing flank pain on my right side it feels really sore and hurts. I'm seeing this new doctor and she thinks that I might have tumors on my pancrease or adrenal glands so I have to get an mri. I've even changed my diet and seen a nutritionist it's awful because nothing works. I wake up with night sweats my body aches I get dizzy and have headaches.

Has your gallbladder been ruled out?

 

[anciendaze]

At this point we don't even know what you are doing at the time symptoms appear. For example, do they appear more often when you are upright or supine? Do they take place at some length of time following a meal, or at particular times of day?

Other people here have problems when their exercise pushes them above an extremely low anaerobic threshold, where glucose is used up by anaerobic metabolic processes. Tumors would be very dangerous, but are also unlikely. Orthostatic intolerance can reduce blood flow to some tissues and organs, which produces local hypoperfusion and anaerobic metabolism in those tissues even though general O2sat is OK. We need to know more than you've told us.

Most of us have weird regulation of endocrine systems which stop short of traditional endocrine diseases.

 

[NJ1996]

Has your gallbladder been ruled out?

It's fine nothing is wrong with it

 

[Research 1st]

I keep having hypoglycemic symptoms with normal blood sugars I'm not sure why ? I've even been to an endrocrinologist and she couldn't even figure out what was wrong with me. It's so weird and when I start to have these hypoglycemic symptoms I have stabbing flank pain on my right side it feels really sore and hurts. I'm seeing this new doctor and she thinks that I might have tumors on my pancrease or adrenal glands so I have to get an mri. I've even changed my diet and seen a nutritionist it's awful because nothing works. I wake up with night sweats my body aches I get dizzy and have headaches.

Please note I am not a doctor. Always follow your doctors medical advise. They are qualified an they are responsible for accurately advising you and guiding you. The following is just my opinion as a patient.

First....in my opinion in people who suffer from 'low blood sugar' attacks, who don't meet the simple test method any doctors surgery or nurse can do.....

Check what your actual fasting blood glucose and/or post prandial results are first of all. Many doctors are cynical about non diabetics because they are used to seeing very low levels, conversely others with diabetes will tell you they feel wobbly and faint (and nervous) before their blood glucose is officially low! These are the people I speak with, people who have to monitor their glucose daily, they know what's up as they suffer the consequences of not monitoring their sugars with a monitor every day. So they tell me what PWME also say (interestingly), they can also feel really sick, eve without ''officially'' low levels, just 'low normal' ,or very near low. Maybe this is due to both conditions being associated to Autonomic Dysfunction as well, who knows. (Diabetes often have neuropathy, and some have POTS).

So that's the first hurdle. Find your actual level.

On the basis it's low normal..... I'm then thinking the following.

PWME or 'Chronic Lyme' report episodic low blood sugar attacks or feeling like it, that respond to immediate consumption of glucose. Some even say they have to eat all the time and don't just get re-active hypos (post food), and they are getting fasting hypo's. No cause is found, perhaps though, as they don't have all the tests - so we can't say 'no cause is ever found' for sure, as most patients have limited tests, or are too ill to have the more complex ones that need to be done in Hospital.

You could say that's inevitable as the brain uses huge amounts of energy and in ME CFS, mitochondria is slammed. Hence, the brain is maybe running a lower glucose level anyway (cerebral glucose) and coupled with autonomic dysfunction, we're probably super sensitive to brain glucose going lower than it should. This is all theoretical. More likely it's to do with crappy hormonal regulation in the brain, due to chronic low grade inflammation (my hunch), hence you 'mimic' other endocrine disorders, without having them as it's centrally mediated dysfunction (brain) not organ mediated (pancreas or adrenals).

Having a 'hypo' was one of my first symptoms with mild 'CFS' (no hint of ME), before coming down with severe housebound ME, so years before I got like I am now, I used to go everywhere with a candy bar and coca cola 'just in case', which once I knew that was involved, reversed the symptoms and was less terrifying when the symptoms hit.

I first got it exercising (when I had mild 'CFS'), and would have to eat copious amounts of food to 'reverse' the attacks that without made me throw up or start shaking violently, going freezing cold after swimming, playing tennis etc.

Now, here's where it gets interesting: Autoimmune POTS patients (tested myself already) often have ME. There's an antibody adrenal receptor than can affect insulin secretion, so maybe, people with this autoimmune problem have an 'immune based' random hypo event due to insulin levels fluctuating?

If you have ME or CFS or Chronic Lyme:

I'd do the following if the doctors are stumped after running a basic morning (fasting) blood glucose and it's hovering above the cut off limit for clinically proven hypoglycemia.

*Fasting insulin levels and post prandial (after a meal).
*Baseline cortisol and ACTH levels together (must be together). If they're low, you'll probably then get an ACTH stimulation test to rule out Addison's disease.
*Check all other pituitary hormones if possible and Thyroid is important.

More advanced tests...

*Glucose tolerance test in hospital (12hr fast beforehand) to rule out provoked reactive hypoglycemia (you drink glucose in the hospital and 'wait').

*Growth Hormone deficiency stimulation test (multiple ways of doing this). This is important as low blood sugar events can occur in Adult Growth Hormone deficiency. It's rare PWME PWCFS get this test, if at all If you look up the symptoms of Adult Growth Hormone deficiency, they may not be 'ME', but they are rather similar to CFS (including shortness of breath and prone to anxiety/panic attacks). There's no reason why patients can't have both conditions.

Failing that, I'd test all your nutritional markers in case your very deficient in chromium or something that helps regulate blood sugar, however, this may not be the problem in the end at all, and something far more simple.

As frustrating as it is, you have to stick with the doctors advice, even if it's slow and takes months. And if you're getting nowhere, think outside the box and suggest other ideas and see what they think.

Good luck.

 

[NJ1996]

You may want to ask for a 24 hour urine catecholamine test. Your body releases these when your blood sugar drops and that's part of what causes the feelings associated with hypoglycemia. A pheochromocytoma (the adrenal tumor your doctor is talking about) can also cause excessive release of these.

Do you have any orthostatic intolerance symptoms as well?

Thanks you! I will take your advice into consideration especially the urine test. I just want to feel better!

 

[NJ1996]

Please note I am not a doctor. Always follow your doctors medical advise. They are qualified an they are responsible for accurately advising you and guiding you. The following is just my opinion as a patient.

First....in my opinion in people who suffer from 'low blood sugar' attacks, who don't meet the simple test method any doctors surgery or nurse can do.....

Check what your actual fasting blood glucose and/or post prandial results are first of all. Many doctors are cynical about non diabetics because they are used to seeing very low levels, conversely others with diabetes will tell you they feel wobbly and faint (and nervous) before their blood glucose is officially low! These are the people I speak with, people who have to monitor their glucose daily, they know what's up as they suffer the consequences of not monitoring their sugars with a monitor every day. So they tell me what PWME also say (interestingly), they can also feel really sick, eve without ''officially'' low levels, just 'low normal' ,or very near low. Maybe this is due to both conditions being associated to Autonomic Dysfunction as well, who knows. (Diabetes often have neuropathy, and some have POTS).

So that's the first hurdle. Find your actual level.

On the basis it's low normal..... I'm then thinking the following.

PWME or 'Chronic Lyme' report episodic low blood sugar attacks or feeling like it, that respond to immediate consumption of glucose. Some even say they have to eat all the time and don't just get re-active hypos (post food), and they are getting fasting hypo's. No cause is found, perhaps though, as they don't have all the tests - so we can't say 'no cause is ever found' for sure, as most patients have limited tests, or are too ill to have the more complex ones that need to be done in Hospital.

You could say that's inevitable as the brain uses huge amounts of energy and in ME CFS, mitochondria is slammed. Hence, the brain is maybe running a lower glucose level anyway (cerebral glucose) and coupled with autonomic dysfunction, we're probably super sensitive to brain glucose going lower than it should. This is all theoretical. More likely it's to do with crappy hormonal regulation in the brain, due to chronic low grade inflammation (my hunch), hence you 'mimic' other endocrine disorders, without having them as it's centrally mediated dysfunction (brain) not organ mediated (pancreas or adrenals).

Having a 'hypo' was one of my first symptoms with mild 'CFS' (no hint of ME), before coming down with severe housebound ME, so years before I got like I am now, I used to go everywhere with a candy bar and coca cola 'just in case', which once I knew that was involved, reversed the symptoms and was less terrifying when the symptoms hit.

I first got it exercising (when I had mild 'CFS'), and would have to eat copious amounts of food to 'reverse' the attacks that without made me throw up or start shaking violently, going freezing cold after swimming, playing tennis etc.

Now, here's where it gets interesting: Autoimmune POTS patients (tested myself already) often have ME. There's an antibody adrenal receptor than can affect insulin secretion, so maybe, people with this autoimmune problem have an 'immune based' random hypo event due to insulin levels fluctuating?

If you have ME or CFS or Chronic Lyme:

I'd do the following if the doctors are stumped after running a basic morning (fasting) blood glucose and it's hovering above the cut off limit for clinically proven hypoglycemia.

*Fasting insulin levels and post prandial (after a meal).
*Baseline cortisol and ACTH levels together (must be together). If they're low, you'll probably then get an ACTH stimulation test to rule out Addison's disease.
*Check all other pituitary hormones if possible and Thyroid is important.

More advanced tests...

*Glucose tolerance test in hospital (12hr fast beforehand) to rule out provoked reactive hypoglycemia (you drink glucose in the hospital and 'wait').

*Growth Hormone deficiency stimulation test (multiple ways of doing this). This is important as low blood sugar events can occur in Adult Growth Hormone deficiency. It's rare PWME PWCFS get this test, if at all If you look up the symptoms of Adult Growth Hormone deficiency, they may not be 'ME', but they are rather similar to CFS (including shortness of breath and prone to anxiety/panic attacks). There's no reason why patients can't have both conditions.

Failing that, I'd test all your nutritional markers in case your very deficient in chromium or something that helps regulate blood sugar, however, this may not be the problem in the end at all, and something far more simple.

As frustrating as it is, you have to stick with the doctors advice, even if it's slow and takes months. And if you're getting nowhere, think outside the box and suggest other ideas and see what they think.

Good luck.

Thank you for the advice I will take all of this into consideration and speak about it with my doctor. My fasting blood glucose usually ranges from 80-84 everymorning and sometimes I still wakeup feeling shaky irritated or just a weird "off" feeling and I have to eat breakfast.

 

[SB_1108]

I'm kind of surprised at the lack of "me too" responses on this thread. I just assumed most ME/CFS patients had "hypoglycemia" as well? I definitely have it and have found no relief (other than eating all the time). No diet has ever worked, no supplement, nothing... just lots of food.

 

[halcyon]

I'm kind of surprised at the lack of "me too" responses on this thread. I just assumed most ME/CFS patients had "hypoglycemia" as well?

I'll throw one in then. I've had both actual hypoglycemia as well as the quasi hypogylcemia that @NJ1996 describes, where it feels exactly like hypoglycemia but you check your BG and it's normal or even high.

 

[Battery Muncher]

I have quasi hypoglycemic symptoms at regular intervals, but not necessarily of the kind the original poster describes

 

[Grigor]

I need to eat every 2 hours. When eating fatty foods maybe 3 hours.
So fed up with it. If I don't I freak out completely.
Had it after my relapse. Lost lots of weight. And since then this hypoglycemia. Ugh.
Maybe the Thyroid??

 

[PatJ]

I've had hypoglycemia for years. I don't think there is a proper category for the CFS type of hypoglycemia. For a very long time I needed to eat exactly 1 hour 35 minutes after my last meal because I would start getting hypo symptoms just after that point. And only during the day. I'm fine from 6:30 PM until around 4:15 AM when I need to start my eating cycle again. I think hypoglycemia during the day can sometimes be related to low cortisol, but I've never had my cortisol tested.

Since I've been taking liposomal vitamin C I've been able to delay eating by another 5 - 15 minutes (so 1:40 - 1:50 after the last meal.)

When reading about hypoglycemia I've often seen the remark that the blood sugar level isn't as important as the speed that the blood sugar drops during a hypo episode. Also, some people get hypo symptoms when others would feel fine at the same blood sugar level.

 

[mermaid]

I just found this thread on here as a result of a search - no doubt there are many others on here who have hypoglycemia, but it seems to have taken me around 7 years to link my migraine aura with hypoglycemia, as I had no other obvious symptoms other than feeling voraciously hungry when I was tired. I am not very good on the science side of things, and no doctors (private or otherwise) ever suggested the cause.

I also have hypothyroidism (20 years) which was diagnosed long before the ME/CFS diagnosis. I see now there are many links there, especially as several adrenal saliva tests over the years have shown my cortisol often on the low side for much of the day.

As a result I am now trying to eat smaller meals more often. I did used to do a low carb diet but I don't think that helped the migraine aura, whereas eating a bit more does seem to (I don't eat sugar as such, and am now low fruit, and have many food intolerances so have to pick and choose what starchy foods I have .... mostly seed based such as Teff and other non gluten grains).

On the whole things have improved hugely since the penny dropped, and I hadn't had an aura for over 2 months until this morning (I had an unusually physical day yesterday and woke early with an aura before breakfast). I am now going to have a dry cracker as I wake I think to help with this.

I found this useful article on the subject from Chris Kresser online (re tthe thyroid side of things) https://chriskresser.com/thyroid-blood-sugar-metabolic-syndrome/

 

[NJ1996]

I just found this thread on here as a result of a search - no doubt there are many others on here who have hypoglycemia, but it seems to have taken me around 7 years to link my migraine aura with hypoglycemia, as I had no other obvious symptoms other than feeling voraciously hungry when I was tired. I am not very good on the science side of things, and no doctors (private or otherwise) ever suggested the cause.

I also have hypothyroidism (20 years) which was diagnosed long before the ME/CFS diagnosis. I see now there are many links there, especially as several adrenal saliva tests over the years have shown my cortisol often on the low side for much of the day.

As a result I am now trying to eat smaller meals more often. I did used to do a low carb diet but I don't think that helped the migraine aura, whereas eating a bit more does seem to (I don't eat sugar as such, and am now low fruit, and have many food intolerances so have to pick and choose what starchy foods I have .... mostly seed based such as Teff and other non gluten grains).

On the whole things have improved hugely since the penny dropped, and I hadn't had an aura for over 2 months until this morning (I had an unusually physical day yesterday and woke early with an aura before breakfast). I am now going to have a dry cracker as I wake I think to help with this.

I found this useful article on the subject from Chris Kresser online (re tthe thyroid side of things) https://chriskresser.com/thyroid-blood-sugar-metabolic-syndrome/

Are you on any medication for the thyroid if so has it helped any ? I have to have a blood test but also take a pill that lowers cortisol in the morning it's weird ? My new doctor is checking for thyroid Issues I'm stuck between Cushing's syndrome and an adrenal issue I just feel like my body isn't kicking into gear something is wrong.

 

[mermaid]

Are you on any medication for the thyroid if so has it helped any ? I have to have a blood test but also take a pill that lowers cortisol in the morning it's weird ? My new doctor is checking for thyroid Issues I'm stuck between Cushing's syndrome and an adrenal issue I just feel like my body isn't kicking into gear something is wrong.

Hello @NJ1996 Yes, I am on thyroid meds but have been so for over 20 years. I used to be on T4 but now on T3 only (for around 3 years). So the medication really predates the increase in migraine aura which I now assume are caused by blood sugar problems. I gather from reading up on it that they can sometimes be linked with hypothyroidism though.....

I hope your Dr manages to track down your issues which sound a bit more complex than mine.

 

[Skippa]

Me too, but I can go for months without outbreaks, and then get it several times a week. Both borderline blood sugar levels and then other times when it doesn't seem the actual levels are "out".

Can't find any rhyme or reason as to the come and go nature of this for me...

 

[mermaid]

I didn't realise that you could buy a blood sugar monitor quite cheaply (Chris Kresser mentions this in the article) so now I know I will buy one to get some idea of what is going on.

Interesting though @Skippa that you are indicating that you get the aura at times when the levels are not out? I read about this on a migraine site that indicated if you get aura first thing (as I was doing) that it's almost always down to blood sugar levels. I guess that if at other times it can be something else then....I tend to get them when I am 'going down with something' also or if I have bad stomach pain (which I get chronically but I am now managing better).

 

[bertiedog]

I'm kind of surprised at the lack of "me too" responses on this thread. I just assumed most ME/CFS patients had "hypoglycemia" as well? I definitely have it and have found no relief (other than eating all the time). No diet has ever worked, no supplement, nothing... just lots of food.

I was exactly the same with blood glucose running out very regularly especially when walking the dog. It would hit me out of nowhere and I would be so dizzy it would cause a panic attack especially when I was way out on the beach. I didn't know how I would get back to the car and I walked like a drunk. Obviously I was getting huge amounts of adrenaline when I probably needed a bit more cortisol but my adrenals weren't able to produce this. It used to happen at night too.

I think it was these episodes that happened so regularly that contributed to my adrenals almost failing and since being on Prednisolone thankfully it doesn't happen anymore. However I still regularly don't feel great about 1 1/2 hours of eating my breakfast and its definitely to do with my blood sugar even though readings are fine. Something in my brain just reacts no matter what breakfast I have.

It gets better after lunch when usually I am fine and can go over 4 hours without eating without any problems. I still need to top up a bit after a good walk with the dog but I don't have those horrible sensations. I wouldn't wish this problem with blood sugar regulation and the symptoms it can cause on my worst enemy! Adjusting one's diet definitely does help but it certainly wasn't a cure for me. There was a lot more going on.

Pam

 

[bertiedog]

I also suffer with severe regular migraines and my blood sugar definitely impacts them too. The pain will get worse when I need to eat, everything just becomes more sensitive. I think many headaches can be explained by this blood sugar issue too but probably most people aren't aware what is happening.

Pam