Hypoglycaemia and higher than normal readings in a non-diabetic - uncertain as to what is happening

[De_Frost]

Hi there.

I'm having issues with hypoglycaemia which has been a problem on and off for over a year. In the last fortnight it's been nearly every other day. I have no diagnosis of diabetes, and I get a hbA1c done at least one a year as I'm registered with my GP for severe mental illness. For the sake of background info, I've taken olanzapine for a few years and other antipsychotics prior - these do cause weight gain & food cravings. I've just come off that type of medication as I'm in a very good place in my life with all my mental health problems very much in remission and I want to stand up without it now. I've had problems with possible psychosis, depression and anxiety in the past, but I also have Asperger's Syndrome and full-blown Tourette's Syndrome.

I'm at a loss of what to think. Each year my hba1c comes back as 36mmol/mol or there abouts, never anything concerning - good, obviously. But I keep getting hypos; I feel shaky, weak, nauseated, very hungry and I start to panic, recently I've been getting dizzy episodes, like vertigo, and entering a 'light-headed fugue state' that lasts for a few hours too. I've done finger prick tests when I feel like I'm hypo and it comes back with a read under 4 mmol. I've also had readings at other times during the day saying my glucose higher than it should be - these have been up to 13 in the past. My GP has been pretty hands off, telling me I need to eat more healthily - this I recognise I have lots of room to improve on; for years I've drank only sugar-free cola, no added sugar in hot drinks, I try to have wholemeal bread and I'm introducing fruit into my diet. Overall, I'm not a healthy eater but I don't think I have a free-for-all on any and everything. I don't exercise but I am actively exploring avenues for this - admittedly I am hesitant because of the hypos. I weigh 14 st 8. I don't think I'm particularly very thirsty, but I may urinate more than others do but I'm not so sure. There could be other things going on with my body, but I don't know if I'm just looking for problems now. I have no one in my immediate family with diabetes. This has only started in the last couple of years, since I've gone into my thirties. I do get perfectly fine finger prick readings a fair amount of the time, and my morning ones before eating have been high 5s or sometimes 6s.

I think my main question is what is, if any of this, is similar in any diabetes onset? What does it mean to get hypos and higher than average finger prick readings despite fine hba1c numbers? What might all this lead to? I would quite happily forgo finger prick readings and worrying if it weren't for these hypos - they cause me a good bit of distress. I want to continue to change but I also want to know what it is I'm likely heading towards at my current rate. Is there anyone here who has had a similar story?

 

[JoKalsbeek]

Hi there.

I'm having issues with hypoglycaemia which has been a problem on and off for over a year. In the last fortnight it's been nearly every other day. I have no diagnosis of diabetes, and I get a hbA1c done at least one a year as I'm registered with my GP for severe mental illness. For the sake of background info, I've taken olanzapine for a few years and other antipsychotics prior - these do cause weight gain & food cravings. I've just come off that type of medication as I'm in a very good place in my life with all my mental health problems very much in remission and I want to stand up without it now. I've had problems with possible psychosis, depression and anxiety in the past, but I also have Asperger's Syndrome and full-blown Tourette's Syndrome.

I'm at a loss of what to think. Each year my hba1c comes back as 36mmol/mol or there abouts, never anything concerning - good, obviously. But I keep getting hypos; I feel shaky, weak, nauseated, very hungry and I start to panic, recently I've been getting dizzy episodes, like vertigo, and entering a 'light-headed fugue state' that lasts for a few hours too. I've done finger prick tests when I feel like I'm hypo and it comes back with a read under 4 mmol. I've also had readings at other times during the day saying my glucose higher than it should be - these have been up to 13 in the past. My GP has been pretty hands off, telling me I need to eat more healthily - this I recognise I have lots of room to improve on; for years I've drank only sugar-free cola, no added sugar in hot drinks, I try to have wholemeal bread and I'm introducing fruit into my diet. Overall, I'm not a healthy eater but I don't think I have a free-for-all on any and everything. I don't exercise but I am actively exploring avenues for this - admittedly I am hesitant because of the hypos. I weigh 14 st 8. I don't think I'm particularly very thirsty, but I may urinate more than others do but I'm not so sure. There could be other things going on with my body, but I don't know if I'm just looking for problems now. I have no one in my immediate family with diabetes. This has only started in the last couple of years, since I've gone into my thirties. I do get perfectly fine finger prick readings a fair amount of the time, and my morning ones before eating have been high 5s or sometimes 6s.

I think my main question is what is, if any of this, is similar in any diabetes onset? What does it mean to get hypos and higher than average finger prick readings despite fine hba1c numbers? What might all this lead to? I would quite happily forgo finger prick readings and worrying if it weren't for these hypos - they cause me a good bit of distress. I want to continue to change but I also want to know what it is I'm likely heading towards at my current rate. Is there anyone here who has had a similar story?

Diabetes means being higher than you should be: a diabetic doesn't usually get hypo's unless they're medicated with something like gliclazide, or take insulin for it. There are conditions though that can cause hypo's, so... Do the hypo's occur some relatively short time after you eat a high-carb meal? You might want to look into something called reactive hypoglycemia. Maybe also ask your doc for an extended oral glucose tolerance test, also known as an extended OGTT. (Always extended, because if it is RH, the hypo can hit when you're on your way home rather than in hospital, and get missed entirely on their radar.).

Mind you, if this is RH, it could well be adding fruits into your diet (which are often high in sugars, bar most berries), will trigger more hypo's. In RH your pancreas pumps out too much insulin in response to a blood glucose peak, so you end up with ups and downs. The thing then is to avoid the glucose peaks by going low carb, to avoid the resultant lows. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help a bit with that. It's meant for T2's, but it should help to level out spikes and dips as well.

Having had struggles with mental health'll also, sometimes, result in anything related to your health falling on deaf ears when a GP is unfamiliar with rather rare conditions like RH and similar things... After all, if things go awry in the brain, you can't possibly have anything else go wrong in your body! Ahem. Maybe if they don't listen, splash out on a CGM so they can see what your blood sugars are doing, the highs and lows recorded on a system T1'and quite a few T2's use too, so it is fairly reliable (night time "hypo's" can actually be caused by sleeping on the sticker, but in the daytime it should work properly a day after applying it). If you show up with hard data to back up your claims, accompanied maybe by a food diary so you can tell which peak or dip was caused by what, they might start paying attention. Can't guarantee it, but docs usually do love a bit of a graph.

Good luck!
Jo

 

[Lamont D]

Hi there.

I'm having issues with hypoglycaemia which has been a problem on and off for over a year. In the last fortnight it's been nearly every other day. I have no diagnosis of diabetes, and I get a hbA1c done at least one a year as I'm registered with my GP for severe mental illness. For the sake of background info, I've taken olanzapine for a few years and other antipsychotics prior - these do cause weight gain & food cravings. I've just come off that type of medication as I'm in a very good place in my life with all my mental health problems very much in remission and I want to stand up without it now. I've had problems with possible psychosis, depression and anxiety in the past, but I also have Asperger's Syndrome and full-blown Tourette's Syndrome.

I'm at a loss of what to think. Each year my hba1c comes back as 36mmol/mol or there abouts, never anything concerning - good, obviously. But I keep getting hypos; I feel shaky, weak, nauseated, very hungry and I start to panic, recently I've been getting dizzy episodes, like vertigo, and entering a 'light-headed fugue state' that lasts for a few hours too. I've done finger prick tests when I feel like I'm hypo and it comes back with a read under 4 mmol. I've also had readings at other times during the day saying my glucose higher than it should be - these have been up to 13 in the past. My GP has been pretty hands off, telling me I need to eat more healthily - this I recognise I have lots of room to improve on; for years I've drank only sugar-free cola, no added sugar in hot drinks, I try to have wholemeal bread and I'm introducing fruit into my diet. Overall, I'm not a healthy eater but I don't think I have a free-for-all on any and everything. I don't exercise but I am actively exploring avenues for this - admittedly I am hesitant because of the hypos. I weigh 14 st 8. I don't think I'm particularly very thirsty, but I may urinate more than others do but I'm not so sure. There could be other things going on with my body, but I don't know if I'm just looking for problems now. I have no one in my immediate family with diabetes. This has only started in the last couple of years, since I've gone into my thirties. I do get perfectly fine finger prick readings a fair amount of the time, and my morning ones before eating have been high 5s or sometimes 6s.

I think my main question is what is, if any of this, is similar in any diabetes onset? What does it mean to get hypos and higher than average finger prick readings despite fine hba1c numbers? What might all this lead to? I would quite happily forgo finger prick readings and worrying if it weren't for these hypos - they cause me a good bit of distress. I want to continue to change but I also want to know what it is I'm likely heading towards at my current rate. Is there anyone here who has had a similar story?

Hi @De_Frost ,
And welcome to the forum.
I agree with everything that @JoKalsbeek has said!
And he given you an idea on things hypoglycaemia related.

I have Reactive Hypoglycaemia, and been in control for the majority since diagnosis.
The majority of GP's and most other medical practitioners, have never come across a patient with hypoglycaemia. But there are a few specialist endocrinologist who have been trained to recognise the symptoms and get the tests necessary for a diagnosis.
Non diabetic hypoglycaemia is quite rare.
And many types of hypoglycaemia that are non diabetic, not only RH.
But the majority are food related, intolerance to certain foods and drinks.
I have had lactose intolerance since very young, but RH is much more than just say, dairy or grains, or starchy vegetables.
Hypoglycaemia, like I have always happens after any carbs, sugars, grains, dairy, rice.

But it is controllable. I was always told to avoid dairy, so I used that logic, with my intolerance to the others when diagnosed and of course the advice I received on this forum. This is how the RH forum started.
Please forest the threads on that forum. It will give you the information you will have to mull over. While you consider your next step. I would insist on a referral to a specialist who has treated a non diabetic hypoglycaemia patient before.

As for the mental health issues, firstly, well done in getting off the meds, there is a link with hypoglycaemia affecting mental health.
I have had issues caused by trauma. I'm in counselling. Not taking meds.
I have heard from others that some doctors think the symptoms are from mental health, but if have hypoglycaemic episodes, that is why you are having them.
Keep asking, my hba1c is 38.
I have Non diabetic late Reactive Hypoglycaemia.
I was misdiagnosed with prediabetes, then T2.
Best wishes.

 

[MrsA2]

Well to me those readings don't seem worryingly low, or high. I think they're in range for non-diabetics, especially if the 13 goes down again very quickly

I'd suggest you start looking into your "sugar free" cola. It will be ram packed with sweetners some of which, "aspartame " for one, are now suspected of being addictive. Your "hypo" symptoms could be the mild withdrawal if your body has got too used to the effects of the sweetners and in fact be craving instead.

There's loads of info on the Internet. Lots of it from some very zealous American sites in particular so just be careful and don't get too sucked until you've researched properly.

These 2 Australian lady doctors have a level headed approach and would be a good start

Alternate sweeteners and low carb diets - What you need to know

Are alternative sweeteners helpful on a low carb diet? We delve into the pros and cons of consuming alternative sweeteners and discuss the worst and 'least worst' options. This article will help you decide if alternative sweeteners are right for you.

www.rlmedicine.com

Then look for KickSugar coach, Florence Christopher

Both sites have podcasts and interviews which will lead you further.

I am conscious I don't want you to add to any anxiety or food issues you may have so go gently and slowly. I just know that lots of people find a lessening of anxiety and a clearer mind if they can avoid , or cut down sugars and sweetners..

Good luck

 

[Deleted member 527103]

I'd suggest you start looking into your "sugar free" cola. It will be ram packed with sweetners some of which, "aspartame " for one, are now suspected of being addictive.

Interesting suggestion.
A few years ago, I read some research (sorry, I can’t find it now) that showed for some people their body gets confused by artificial sweeteners. Their body thinks it’s real sugar and releases insulin in response.

Might be worth trialling a period without diet cola.
Or looking to see if the hypos coincide with drinking cola.

 

[Lamont D]

Well to me those readings don't seem worryingly low, or high. I think they're in range for non-diabetics, especially if the 13 goes down again very quickly

I'd suggest you start looking into your "sugar free" cola. It will be ram packed with sweetners some of which, "aspartame " for one, are now suspected of being addictive. Your "hypo" symptoms could be the mild withdrawal if your body has got too used to the effects of the sweetners and in fact be craving instead.

There's loads of info on the Internet. Lots of it from some very zealous American sites in particular so just be careful and don't get too sucked until you've researched properly.

These 2 Australian lady doctors have a level headed approach and would be a good start

Alternate sweeteners and low carb diets - What you need to know

Are alternative sweeteners helpful on a low carb diet? We delve into the pros and cons of consuming alternative sweeteners and discuss the worst and 'least worst' options. This article will help you decide if alternative sweeteners are right for you.

www.rlmedicine.com

Then look for KickSugar coach, Florence Christopher

Both sites have podcasts and interviews which will lead you further.

I am conscious I don't want you to add to any anxiety or food issues you may have so go gently and slowly. I just know that lots of people find a lessening of anxiety and a clearer mind if they can avoid , or cut down sugars and sweetners..

Good luck

I have read a few articles/studies referring to aspartame addiction, intolerance and the anxiety issues you mentioned.

 

[De_Frost]

Thank you, that's helpful advice. I've read a bit in the past about reactive hypoglycaemia; I didn't know they can occur up to 4 hours after eating so in my mind it does make sense that is the cause. I also looked up my good cholesterol levels online from a recent blood test I had done and they're below what is healthy, so I think I'm at a crossroads right now where I can actively change or continue to get unwell and be physically miserable.
I get my hypos just before lunch or later afternoon so I'm actively looking to how I approach these two meals. I've got access to yogurts readily available at my workplace as well as porridge - I'll be careful to avoid any with additional sugar. My lunch meal is I think the biggest contributor to how I'm end up feeling. I've been looking into mixed nuts and getting some blueberries to put in my lunchbox - I have seen that certain nuts will add weight, so I'll try to be mindful with that.
I've also found helpful videos online about what types of exercises may help such as muscle building. I'm a weakling so I'm going to add in wall presses and dumbbell lifting. What I was told is that more mass equals more area for sugar to be absorbed? So maybe that's a good start to building up to other things.
I may well look into CGMs just for the short term just so I can figure out what changes to my diet are working. Navigating food options seem like a minefield! "Eat more fruit and veg", they say. "It's simple!", they say - I didn't know that bananas and apples won't necessarily help keep sugar spikes under control! Diabetes.co.uk has a lot of useful ideas.
I'm hoping that the lack of olanzapine is also going to make a difference, but I think I know I can't rely on just not taking that and thinking things will work out fine.

 

[De_Frost]

I'm unsure about aspartame being the problem here but I'm willing to give it a go. I'm unconvinced this is some sort of 'withdrawal' thing because when I feel unwell, I can recover with ingesting some sugar and I do recover shortly after.

I'd like to revisit my GP because I have additional things going on which may be related such as discoloured armpits which get itch and can be uncomfortable and skin tags where there weren't any before. I am concerned that I'm getting fobbed off as a hypochondriac, but I've had to fight doctors before when pursuing a Tourette's diagnosis - but to counterbalance that, I'm also aware I am not impervious to being wrong at times.

 

[Lamont D]

Thank you, that's helpful advice. I've read a bit in the past about reactive hypoglycaemia; I didn't know they can occur up to 4 hours after eating so in my mind it does make sense that is the cause. I also looked up my good cholesterol levels online from a recent blood test I had done and they're below what is healthy, so I think I'm at a crossroads right now where I can actively change or continue to get unwell and be physically miserable.
I get my hypos just before lunch or later afternoon so I'm actively looking to how I approach these two meals. I've got access to yogurts readily available at my workplace as well as porridge - I'll be careful to avoid any with additional sugar. My lunch meal is I think the biggest contributor to how I'm end up feeling. I've been looking into mixed nuts and getting some blueberries to put in my lunchbox - I have seen that certain nuts will add weight, so I'll try to be mindful with that.
I've also found helpful videos online about what types of exercises may help such as muscle building. I'm a weakling so I'm going to add in wall presses and dumbbell lifting. What I was told is that more mass equals more area for sugar to be absorbed? So maybe that's a good start to building up to other things.
I may well look into CGMs just for the short term just so I can figure out what changes to my diet are working. Navigating food options seem like a minefield! "Eat more fruit and veg", they say. "It's simple!", they say - I didn't know that bananas and apples won't necessarily help keep sugar spikes under control! Diabetes.co.uk has a lot of useful ideas.
I'm hoping that the lack of olanzapine is also going to make a difference, but I think I know I can't rely on just not taking that and thinking things will work out fine.

Hi again,
If RH is thought to be the issue or even other hypoglycaemia condition, then your doctor/ specialist should get you an extended oral glucose tolerance test. It is extended to four, five, six hours, to see if you go hypo from the glucose taken. It is a tasting test. And depending on how intolerant the patient is, the hypo can happen anywhere between two and six hours. My usual hypo occurs around the three and a half to four hours.
But, depending on the amount of glucose derived from your food drink, it will alter that time.
As will the spike, mine is usually between 45 minutes and an hour.
I wouldn't concern yourself about the cholesterol, knowing the cause, of your issues, getting the right treatment dietary requirements, will make a difference in the long run.
You have to be careful with yoghurt, only have full fat, the low fat fruit ones have too much sugar in them as will tropical fruits. Porridge is a grain, oats, and if it is hypoglycaemia, then, it is high in carbs and will start the symptoms early in the day.
You will have to find foods that don't bring on the symptoms especially if it is hypoglycaemia.
Most nuts are ok, but you can learn which arent, such as peanuts.
When you see your GP, mention you have recorded hypo symptoms and could you be referred you to a specialist.
Without the tests, you won't know, nor your doctor!
Meanwhile, have a read of the low carb forum or dietdoctor.com or @Rachox can give you a link to the forum nutritional thingy.

Going low carb will help you anyway.

Keep asking.

Best wishes.

 

[Rachox]

Thanks for the tag @Lamont D , here’s a link to the nutritional thingy which our member @JoKalsbeek wrote,
https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html