Overly detailed hypoglycaemia story

[rosie04]

There’s so little on reactive hypoglycaemia that it has all been pretty isolating- I’m so relieved to have found this forum and hear some all too familiar stories. Apologies on how much i’m about to write, there’s a fair amount to unload!

Unfortunately whilst I was 17/18 I had disordered eating with a restrictive diet and rapidly became very underweight. Whilst recovering I noticed I was reacting to certain foods strangely but didn’t take massive notice as it’s not unknown for your body to react to receiving nutrition again as you recover e.g. re-feeding syndrome. It was when I noticed sugary foods caused the most dramatic reaction I knew something was up, I distinctly remember eating some cake in a cafe and almost instantly having a splitting headache later followed by being so confused and disoriented I was finding it hard to talk, I was convinced I was diabetic.

Luckily I did get back up to a healthy weight but still wasn’t feeling right. We (my family and I) identified ourselves that I probably was having sugar related swings fairly early on, but thought it was a temporary leftover of my eating disorder and that it’d go away with time + eating frequently. I also avoided really sugary foods. I even went to a doctor after fainting and having disturbances with my vision and I suggested it might’ve been due to low sugar but was told that probably wasn’t the case, she measured my sugar at the time, it was normal (5.8) then did further blood tests which showed I was low on iron, so the fainting was put down to that and the visual disturbance as pre-syncope. It all definitely seemed to calm down for a while whilst I was eating frequently and exercising over the summer, I felt a lot better in myself. When I was feeling low on energy usually I’d grab a snack and feel ok again.

Fast forward, I moved away to uni and was absolutely loving my course, new independence and was feeling well but found I had to snack very often to keep my concentration flowing! I then became very unwell with some sort of gastric bug which lasted as a week of pretty extreme symptoms. I felt completely out of kilter after being ill and was experiencing neurological symptoms, tingling hands and again visual disturbance. I was waking up in the night and finding it hard to sleep at all with my heart thumping and sometimes palpitating. After researching a little I noticed those symptoms also aligned with hypoglycaemia and so I purchased a finger prick monitor. I was getting low readings whilst experiencing symptoms and at one point “LO” but not sure if it was a misreading.

After seeing that I tried a libre for the first time and was shocked to see I was spiking after meals and snacks, I’d shoot up then plummet down into a hypo. So far I have only dropped to 2.7 at worst on the libre but who knows how low I was going when I didn’t have an alarm and know to treat lows! Very quickly identified it was carbohydrates (even complex carbs like lentils) that were triggering the spike / plummet cycle so switched to low carb. On low carb some days i’m pretty stable, others are still a complete nightmare where i’m trying not to go low all day & being woken up to lows at night. Still learning which foods set me off and considering trying for full ketosis but a little reluctant to due to my past of restrictive eating and until I find out the full root cause of my hypoglycaemia / if it can be reversed at all with anything other than just diet. If I go for keto it’d be important that I still have adequate intake so I don’t reverse my recovery progress, i’m also currently vegetarian which makes it even trickier!

Another thing is my digestion is completely out of whack now, it was already quite off before the gastric bug but it’s now awful and I have almost constant sharp pain in my stomach. I have had to come home from uni but am not sure how long-term it’ll be or if i’ll need a long break before going back to get better. I was not at all taken seriously by most doctors until I discovered the libre and could show them what was going on! Previously my symptoms were essentially written off as stress.

Awaiting more help from an endo and currently wondering about a functional doctor to check out my gut! Even if it’s not a digestive issue / infection that’s causing it, it can only be exacerbating the problem and i’m in sometimes excruciating pain! Also seem to be dealing with some sort of supposed asthma and difficulty breathing for the first time ever, so think my whole body is generally a bit annoyed and inflamed

things that have been ruled out so far through testing

* Insulinoma
* Addisons disease- I did actually have a slightly low cortisol reading which is why they tested for it, low cortisol could still be part of the problem
* Diabetes

 

[Lamont D]

First of all it is not a problem about long posts, I am absolutely guilty of doing so myself.
And I have been told many times to do so

There’s so little on reactive hypoglycaemia that it has all been pretty isolating- I’m so relieved to have found this forum and hear some all too familiar stories. Apologies on how much i’m about to write, there’s a fair amount to unload!

Unfortunately whilst I was 17/18 I had disordered eating with a restrictive diet and rapidly became very underweight. Whilst recovering I noticed I was reacting to certain foods strangely but didn’t take massive notice as it’s not unknown for your body to react to receiving nutrition again as you recover e.g. re-feeding syndrome. It was when I noticed sugary foods caused the most dramatic reaction I knew something was up, I distinctly remember eating some cake in a cafe and almost instantly having a splitting headache later followed by being so confused and disoriented I was finding it hard to talk, I was convinced I was diabetic.

Luckily I did get back up to a healthy weight but still wasn’t feeling right. We (my family and I) identified ourselves that I probably was having sugar related swings fairly early on, but thought it was a temporary leftover of my eating disorder and that it’d go away with time + eating frequently. I also avoided really sugary foods. I even went to a doctor after fainting and having disturbances with my vision and I suggested it might’ve been due to low sugar but was told that probably wasn’t the case, she measured my sugar at the time, it was normal (5.8) then did further blood tests which showed I was low on iron, so the fainting was put down to that and the visual disturbance as pre-syncope. It all definitely seemed to calm down for a while whilst I was eating frequently and exercising over the summer, I felt a lot better in myself. When I was feeling low on energy usually I’d grab a snack and feel ok again.

Fast forward, I moved away to uni and was absolutely loving my course, new independence and was feeling well but found I had to snack very often to keep my concentration flowing! I then became very unwell with some sort of gastric bug which lasted as a week of pretty extreme symptoms. I felt completely out of kilter after being ill and was experiencing neurological symptoms, tingling hands and again visual disturbance. I was waking up in the night and finding it hard to sleep at all with my heart thumping and sometimes palpitating. After researching a little I noticed those symptoms also aligned with hypoglycaemia and so I purchased a finger prick monitor. I was getting low readings whilst experiencing symptoms and at one point “LO” but not sure if it was a misreading.

After seeing that I tried a libre for the first time and was shocked to see I was spiking after meals and snacks, I’d shoot up then plummet down into a hypo. So far I have only dropped to 2.7 at worst on the libre but who knows how low I was going when I didn’t have an alarm and know to treat lows! Very quickly identified it was carbohydrates (even complex carbs like lentils) that were triggering the spike / plummet cycle so switched to low carb. On low carb some days i’m pretty stable, others are still a complete nightmare where i’m trying not to go low all day & being woken up to lows at night. Still learning which foods set me off and considering trying for full ketosis but a little reluctant to due to my past of restrictive eating and until I find out the full root cause of my hypoglycaemia / if it can be reversed at all with anything other than just diet. If I go for keto it’d be important that I still have adequate intake so I don’t reverse my recovery progress, i’m also currently vegetarian which makes it even trickier!

Another thing is my digestion is completely out of whack now, it was already quite off before the gastric bug but it’s now awful and I have almost constant sharp pain in my stomach. I have had to come home from uni but am not sure how long-term it’ll be or if i’ll need a long break before going back to get better. I was not at all taken seriously by most doctors until I discovered the libre and could show them what was going on! Previously my symptoms were essentially written off as stress.

Awaiting more help from an endo and currently wondering about a functional doctor to check out my gut! Even if it’s not a digestive issue / infection that’s causing it, it can only be exacerbating the problem and i’m in sometimes excruciating pain! Also seem to be dealing with some sort of supposed asthma and difficulty breathing for the first time ever, so think my whole body is generally a bit annoyed and inflamed

things that have been ruled out so far through testing

* Insulinoma
* Addisons disease- I did actually have a slightly low cortisol reading which is why they tested for it, low cortisol could still be part of the problem
* Diabetes
View attachment 64298

Lots of information and it does clear up some of the horrible symptoms you are going through.
The blurred vision is a symptom of your higher than normal levels, a spike, the trigger, the reaction and that is possibly the time to have a small bite, to prevent the low, sugar crash, you could use something as simple as some cheese or something you know that will stabilise your blood glucose levels.
You can see and your research already has given you a handle on your possible hypoglycaemia.
It is clear that cortisol, can be an issue, with the same issue as low insulin first phase response. And of course the overshoot of insulin as is the reaction. The hormonal response to carbs, is something that the doctors won't consider and I'm glad to see you have an endocrinologist. The more information you have, the more details of what you are going through, can only help, a food diary is something I would recommend.
I can only repeat, that going as low carb as possible can and will help, going full keto, is also an option, but it is carbs we are intolerant to. It will be interesting to see, if you can normalize your cortisol levels.
You are in the process of your body adjusting to the new dietary requirements. As with the dietary and stomach issues you have been battling with for a few years. And getting control of your BG levels is intrinsic to the reduction of symptoms and hypos.
I am not certain of how my RH developed, it could have the bacterium I had (helicobactor pylori) that caused me discomfort for years before, I was given anti biotic for it. This was discovered cos of a endoscopy.
It does come down to what you eat tho, and I'm not vegan. Protein, good saturated fats and veg are important, beware of hidden sugars and industrial foods. I only eat fresh food. Beware of starchy carbs like spuds.
Have you had an extended oral glucose tolerance test?
One of the diagnostic tests that will definitely prove RH. Is a fasting test. This is done over a number of days, usually three to four, 72 hours. And this was a big eye opener for me. If I needed to, I could fast. Without effecting my body. So after a lot of testing, I use intermittent fasting, and I only eat in the late afternoon early evening. This is useful, in many ways. It helps that you can be free of symptom the early hours of the day.
I have read that inflammation is a cause of many endocrine health issues. So it doesn't surprise me.
It is still early days into gaining more knowledge about hypoglycaemia, and if you are intolerant to carbs, the dietary changes you take. Stopping the hypos, symptom free and having good energy levels. That is what I achieved.
It's not easy, and there will be times when you feel awful, even with the diet. But hopefully you can find a way to get control.
Hope this helps, and keep asking.
Told you I do long posts!
Best wishes

 

[rosie04]

First of all it is not a problem about long posts, I am absolutely guilty of doing so myself.
And I have been told many times to do so

Lots of information and it does clear up some of the horrible symptoms you are going through.
The blurred vision is a symptom of your higher than normal levels, a spike, the trigger, the reaction and that is possibly the time to have a small bite, to prevent the low, sugar crash, you could use something as simple as some cheese or something you know that will stabilise your blood glucose levels.
You can see and your research already has given you a handle on your possible hypoglycaemia.
It is clear that cortisol, can be an issue, with the same issue as low insulin first phase response. And of course the overshoot of insulin as is the reaction. The hormonal response to carbs, is something that the doctors won't consider and I'm glad to see you have an endocrinologist. The more information you have, the more details of what you are going through, can only help, a food diary is something I would recommend.
I can only repeat, that going as low carb as possible can and will help, going full keto, is also an option, but it is carbs we are intolerant to. It will be interesting to see, if you can normalize your cortisol levels.
You are in the process of your body adjusting to the new dietary requirements. As with the dietary and stomach issues you have been battling with for a few years. And getting control of your BG levels is intrinsic to the reduction of symptoms and hypos.
I am not certain of how my RH developed, it could have the bacterium I had (helicobactor pylori) that caused me discomfort for years before, I was given anti biotic for it. This was discovered cos of a endoscopy.
It does come down to what you eat tho, and I'm not vegan. Protein, good saturated fats and veg are important, beware of hidden sugars and industrial foods. I only eat fresh food. Beware of starchy carbs like spuds.
Have you had an extended oral glucose tolerance test?
One of the diagnostic tests that will definitely prove RH. Is a fasting test. This is done over a number of days, usually three to four, 72 hours. And this was a big eye opener for me. If I needed to, I could fast. Without effecting my body. So after a lot of testing, I use intermittent fasting, and I only eat in the late afternoon early evening. This is useful, in many ways. It helps that you can be free of symptom the early hours of the day.
I have read that inflammation is a cause of many endocrine health issues. So it doesn't surprise me.
It is still early days into gaining more knowledge about hypoglycaemia, and if you are intolerant to carbs, the dietary changes you take. Stopping the hypos, symptom free and having good energy levels. That is what I achieved.
It's not easy, and there will be times when you feel awful, even with the diet. But hopefully you can find a way to get control.
Hope this helps, and keep asking.
Told you I do long posts!
Best wishes

Thanks so much for your advice / thoughts it really is so helpful, especially as you definitely seem to have been there and done that! info overload again sorry!!

Some other observations from being on the libres (which I know can often misread so hard to fully know) - I sometimes feel symptoms at just 3.8, I know some people function perfectly well at this level, pretty fascinating how we’re all so individual! Currently If I try fasting or anything of the sort I tend to sit in the 4’s and have very little energy + brain fog! often after a while I will just fall into a hypo following not eating for prolonged amounts of time or pushing a meal forward, but I think my body is just quite upset and inflamed atm and would take a while to adjust to fasting.

When I am more stable i’ve noticed lows often correct themselves without me having to intervene (glycogen kicking in?) and I can tolerate more. When i’m oscillating due to a spike I am extremely sensitive to almost every food, and unless I treat a hypo it seems to just keep going down or stay low until I do something about it. I also feel completely terrible when my sugar is going up and down in that sort of wave motion, even if it’s quite subtle I still feel these massive bouts of anxiety and sometimes panic attacks which are unusual for me and stress seems to worsen drops. When it’s climbing smoothly (bit of a rare occurance currently) I can think so much more clearly and feel more at ease.

My cortisol levels weren’t scarily low but definitely on the low side which could be a clue, I know cortisol counteracts insulin spikes to an extent so will definitely be useful to investigate that further. Maybe why it’s shooting about so aggressively rather than going up gently. And I did want to look into checking out my gut bacteria to see if that was worsening everything, I am experiencing a lot of digestive distress and pain so would not be surprised if something was not right. Maybe a hormonal imbalance / digestive issue combined is making me much worse and with treatment I could get on top of this a lot better, but I can only speculate!

I’m currently high protein / fat and low carb but not fully keto! Your idea of a food diary sounds great and will definitely help identify what’s best for me, so far avocados and omelettes seem to be my friend! I think if I do go for the keto diet which seems to have been very successful for some people, I might have to consider going at least pescatarian to get some good nutrients in for enough energy, currently I have very little- I did at one point have a very active life and would love to return to that as it’s how I thrive best but not sure how far-fetched that is! can only try my best for now and hope for some help from my endocrinologist

also I think you’re right about me going hyper and that causing some of my problems, I quickly gave up having carb based meals after I started using the monitor and saw how they were affecting me so am not too sure how high I was going whilst eating “normally”! I went up to 9.7 at worst on the libre after eating brown rice which isn’t crazy high, but it’s definitely not right and I shot into hypo very quickly after it, even with snacks in an attempt to prevent the drop!! there was a point where I was eating pasta, granola, biscuits, pizza, scones, pastries ect - wonder what was happening then, probably a bigger reaction than brown rice. I have (mild) nerve damage which I hope I can reverse by staying in range. but like i’ve mentioned I’ve tested negative for diabetes and hope i’ve not caused any sort of insulin resistance from my unstable sugar levels.

sorry again for the info overload but I have found it really interesting reading about everyone else and thought I’d share my experiences! hope I can learn to better manage everything

 

[Lamont D]

Once again, info overload as you have seen, if you read my posts in the RH forum.

Thanks so much for your advice / thoughts it really is so helpful, especially as you definitely seem to have been there and done that! info overload again sorry!!

Some other observations from being on the libres (which I know can often misread so hard to fully know) - I sometimes feel symptoms at just 3.8, I know some people function perfectly well at this level, pretty fascinating how we’re all so individual! Currently If I try fasting or anything of the sort I tend to sit in the 4’s and have very little energy + brain fog! often after a while I will just fall into a hypo following not eating for prolonged amounts of time or pushing a meal forward, but I think my body is just quite upset and inflamed atm and would take a while to adjust to fasting.

When I am more stable i’ve noticed lows often correct themselves without me having to intervene (glycogen kicking in?) and I can tolerate more. When i’m oscillating due to a spike I am extremely sensitive to almost every food, and unless I treat a hypo it seems to just keep going down or stay low until I do something about it. I also feel completely terrible when my sugar is going up and down in that sort of wave motion, even if it’s quite subtle I still feel these massive bouts of anxiety and sometimes panic attacks which are unusual for me and stress seems to worsen drops. When it’s climbing smoothly (bit of a rare occurance currently) I can think so much more clearly and feel more at ease.

My cortisol levels weren’t scarily low but definitely on the low side which could be a clue, I know cortisol counteracts insulin spikes to an extent so will definitely be useful to investigate that further. Maybe why it’s shooting about so aggressively rather than going up gently. And I did want to look into checking out my gut bacteria to see if that was worsening everything, I am experiencing a lot of digestive distress and pain so would not be surprised if something was not right. Maybe a hormonal imbalance / digestive issue combined is making me much worse and with treatment I could get on top of this a lot better, but I can only speculate!

I’m currently high protein / fat and low carb but not fully keto! Your idea of a food diary sounds great and will definitely help identify what’s best for me, so far avocados and omelettes seem to be my friend! I think if I do go for the keto diet which seems to have been very successful for some people, I might have to consider going at least pescatarian to get some good nutrients in for enough energy, currently I have very little- I did at one point have a very active life and would love to return to that as it’s how I thrive best but not sure how far-fetched that is! can only try my best for now and hope for some help from my endocrinologist

also I think you’re right about me going hyper and that causing some of my problems, I quickly gave up having carb based meals after I started using the monitor and saw how they were affecting me so am not too sure how high I was going whilst eating “normally”! I went up to 9.7 at worst on the libre after eating brown rice which isn’t crazy high, but it’s definitely not right and I shot into hypo very quickly after it, even with snacks in an attempt to prevent the drop!! there was a point where I was eating pasta, granola, biscuits, pizza, scones, pastries ect - wonder what was happening then, probably a bigger reaction than brown rice. I have (mild) nerve damage which I hope I can reverse by staying in range. but like i’ve mentioned I’ve tested negative for diabetes and hope i’ve not caused any sort of insulin resistance from my unstable sugar levels.

sorry again for the info overload but I have found it really interesting reading about everyone else and thought I’d share my experiences! hope I can learn to better manage everything

Regardless of BG levels, you sometimes cannot discern the difference in symptoms between the rollercoaster ride of your levels once it triggers, and yes hypos can right themselves, cos even though your liver will always intervene with glycogen to correct (glucogenisis) your hypo, the high level of insulin after secondary insulin phase, (overshoot) it won't be enough, to prevent the hypo but will eventually.
And just to confuse you a little, symptoms can be felt, if your BG levels drop quickly.

Fasting, my first time because of the excess weight, insulin resistance, and dependent on eating most of the day. I couldn't adjust to it. So, because I didn't have a resource that truly helped me through it, I just did it over a couple of weeks until I started the tests fasting bloods, eOGTTs and finally the fasting test, fasting was important. It's not easy but, I couldn't believe how quickly you feel better and energy levels do go up. Going keto is the same, keto flu is not nice, but it is worth it.
My energy levels are brilliant, it is now my age and other issues that hold me back. So I can see that if you do get control, you will be able to do more, walking is brilliant, fifteen minutes after eating for fifteen minutes, does help with everything.

It is not impossible to have RH without being T2.
But I was diagnosed with it when in normal levels.
So RH is non diabetic.
It was called idiopathic postprandial hypoglycaemia. Now it is, non diabetic reactive hypoglycaemia!
But, cos of the excess insulin, maybe insulin resistance, the imbalance with hormonal response. It can mimic T2. And you have normal BG levels. You only go into diabetic range when eating carbs. Carbs are the issue, all carbs spike me. I am totally intolerant to carbs.

Keep asking, the more knowledge you have about the science of it all the better.

Best wishes.

 

[rosie04]

Ah so interesting, this was one of my drops today where I felt extremely unwell despite not going ridiculously low, but you can see the nature of it and how I suddenly go down, maybe that’s why I feel the symptoms intensely? no obvious huge spike triggered this one so seems a little random! think it’s keto next for me then as I guess that’s the only sustainable way for me to gain energy. think i’m torturing myself a bit on v low carb, but not quite low enough for ketosis haha. Not looking forward to that flu, but I just want my health back! luckily I have some ketosis test strips so I can know for sure if i’m going into it, really hope it helps and I can get my life back

 

[Lamont D]

Ah so interesting, this was one of my drops today where I felt extremely unwell despite not going ridiculously low, but you can see the nature of it and how I suddenly go down, maybe that’s why I feel the symptoms intensely? no obvious huge spike triggered this one so seems a little random! think it’s keto next for me then as I guess that’s the only sustainable way for me to gain energy. think i’m torturing myself a bit on v low carb, but not quite low enough for ketosis haha. Not looking forward to that flu, but I just want my health back! luckily I have some ketosis test strips so I can know for sure if i’m going into it, really hope it helps and I can get my life backView attachment 64317

No spike.
And a sudden 3mmols drop.
What and when did you eat? Did you eat?

I'm not sure about this, I have heard of going hypo, but what is the cause? In your other graphs you do have spikes?
It might be a random reading but which is known with some CGM, but to have the symptoms at the same time?

By the way previous to that drop, your BG levels are very good, if you could maintain those levels.

 

[rosie04]

It’s so strange right? think i’m going to confuse my endocrinologist a lot! but the way it just goes out of nowhere makes me think there’s possibly some underlying medical problem or otherwise it looks almost like I just ran out of petrol and needed an extra something- who knows! i’m pretty sure it wasn’t a misreading because it was accompanied by all my usual symptoms, headache, pounding heart & anxiety but i’ll do a finger prick next time to confirm! I had a hummus sandwich for lunch pretty early around 12 - using keto bread that is genuinely only 0.6g carbs and hasn’t caused me problems in the past and sort of had small snacks of olives, walnuts & tofu ect just to keep it steady but even then it eventually dropped- so tricky! even when i’ve had my sugar totally balanced and steady it’ll shoot down sometimes for no apparent reason so i’m quite concerned, but it did originally start with big spikes leading to hypos! i think that gastric bug made my possibly reactive hypoglycaemia even more reactive! another interesting graph from a while ago, look at that balance then tiny spike

 

[MarthaD]

Ah so interesting, this was one of my drops today where I felt extremely unwell despite not going ridiculously low, but you can see the nature of it and how I suddenly go down, maybe that’s why I feel the symptoms intensely? no obvious huge spike triggered this one so seems a little random! think it’s keto next for me then as I guess that’s the only sustainable way for me to gain energy. think i’m torturing myself a bit on v low carb, but not quite low enough for ketosis haha. Not looking forward to that flu, but I just want my health back! luckily I have some ketosis test strips so I can know for sure if i’m going into it, really hope it helps and I can get my life backView attachment 64317

Hi..Was this by any chance after any exertion of some kind? I'm a type 2 with RH, and I find I go low post-carb spike but also post-exertion, and by exertion, that could be as simple as vacuuming or a short walk.

 

[rosie04]

Hi..Was this by any chance after any exertion of some kind? I'm a type 2 with RH, and I find I go low post-carb spike but also post-exertion, and by exertion, that could be as simple as vacuuming or a short walk.

Ah interesting this could be it actually, thanks for that thought! I went on a walk earlier in the day, but maybe that was some sort of delayed response. Was my first walk in a little while as i’ve been so unwell, so not insanely surprising for there to be a reaction! it’s quite hard because i don’t want to avoid walking and become sedentary in fear of exertion causing lows- hope it calms or i can find something to eat right after to avoid that reaction

 

[Lamont D]

It’s so strange right? think i’m going to confuse my endocrinologist a lot! but the way it just goes out of nowhere makes me think there’s possibly some underlying medical problem or otherwise it looks almost like I just ran out of petrol and needed an extra something- who knows! i’m pretty sure it wasn’t a misreading because it was accompanied by all my usual symptoms, headache, pounding heart & anxiety but i’ll do a finger prick next time to confirm! I had a hummus sandwich for lunch pretty early around 12 - using keto bread that is genuinely only 0.6g carbs and hasn’t caused me problems in the past and sort of had small snacks of olives, walnuts & tofu ect just to keep it steady but even then it eventually dropped- so tricky! even when i’ve had my sugar totally balanced and steady it’ll shoot down sometimes for no apparent reason so i’m quite concerned, but it did originally start with big spikes leading to hypos! i think that gastric bug made my possibly reactive hypoglycaemia even more reactive! another interesting graph from a while ago, look at that balance then tiny spike View attachment 64322

The thing an endocrinologist would say possibly, is that, that could be normal.
don't get me wrong, but my endo wouldn't consider anything over 3.5 mmols a hypo. But we are all different and you could get the symptoms of a hypo anyway.
you have not had anything carb, so it hasn't gone high enough to trigger the reaction. Unless your trigger is in high normal levels! Which I find extraordinary and very quick, similar to glucose dumping, but you have no glucose to do that...... Instant hypoglycaemia!

Hi..Was this by any chance after any exertion of some kind? I'm a type 2 with RH, and I find I go low post-carb spike but also post-exertion, and by exertion, that could be as simple as vacuuming or a short walk.

This is a good thought. Maybe @rosie04 you could have done something to give you a liver dump (glucogenisis)!
And I thought I was weird ha!

 

[Lamont D]

Ah interesting this could be it actually, thanks for that thought! I went on a walk earlier in the day, but maybe that was some sort of delayed response. Was my first walk in a little while as i’ve been so unwell, so not insanely surprising for there to be a reaction! it’s quite hard because i don’t want to avoid walking and become sedentary in fear of exertion causing lows- hope it calms or i can find something to eat right after to avoid that reaction

I do think you need to keep an eye on how you get on
Ignore overnight readings as that could be compression readings.
I would start experimenting, eat what you do normally, have another walk do what you normally do, and see what the readings come up and double check with glucometer if you go hypo.

Best wishes

 

[rosie04]

The thing an endocrinologist would say possibly, is that, that could be normal.
don't get me wrong, but my endo wouldn't consider anything over 3.5 mmols a hypo. But we are all different and you could get the symptoms of a hypo anyway.
you have not had anything carb, so it hasn't gone high enough to trigger the reaction. Unless your trigger is in high normal levels! Which I find extraordinary and very quick, similar to glucose dumping, but you have no glucose to do that...... Instant hypoglycaemia!

This is a good thought. Maybe @rosie04 you could have done something to give you a liver dump (glucogenisis)!
And I thought I was weird ha!

haha it’s just super strange, being a medical mystery is cool and all but I would prefer to know what’s going on! will definitely update on here if I find out I have something else going on causing my weird sugar! otherwise I just need to keep trying new things and see if I can normalise it

 

[rosie04]

I do think you need to keep an eye on how you get on
Ignore overnight readings as that could be compression readings.
I would start experimenting, eat what you do normally, have another walk do what you normally do, and see what the readings come up and double check with glucometer if you go hypo.

Best wishes

Will certainly double check on the meter next time if the reading looks odd! and yes I get loads of lows at night (i’ve had this with several sensors so can’t just be that this is a faulty one) wondering if some of them are me accidentally leaning on the sensor! really inconvenient if they’re misreadings as it sets off an alarm and wakes me up

 

[Lamont D]

haha it’s just super strange, being a medical mystery is cool and all but I would prefer to know what’s going on! will definitely update on here if I find out I have something else going on causing my weird sugar! otherwise I just need to keep trying new things and see if I can normalise it

Will certainly double check on the meter next time if the reading looks odd! and yes I get loads of lows at night (i’ve had this with several sensors so can’t just be that this is a faulty one) wondering if some of them are me accidentally leaning on the sensor! really inconvenient if they’re misreadings as it sets off an alarm and wakes me up

I have been told I'm weird by several doctors and by my so called friends!
And I do agree and sympathise with you. Knowing what the cause is and getting a true diagnosis is important. Simply to know how to prevent the symptoms.

It is called compression readings because whilst your asleep you can't help but lean on the sensor.
Now, if it was certain you had RH, I would say not to eat four hours before you go to bed. Then you would not go hypo! But we just don't know for sure.
Keeping to low carb, will help in the long term anyway.

Keep safe.

Best wishes

 

[RobynV]

Thanks so much for your advice / thoughts it really is so helpful, especially as you definitely seem to have been there and done that! info overload again sorry!!

Some other observations from being on the libres (which I know can often misread so hard to fully know) - I sometimes feel symptoms at just 3.8, I know some people function perfectly well at this level, pretty fascinating how we’re all so individual! Currently If I try fasting or anything of the sort I tend to sit in the 4’s and have very little energy + brain fog! often after a while I will just fall into a hypo following not eating for prolonged amounts of time or pushing a meal forward, but I think my body is just quite upset and inflamed atm and would take a while to adjust to fasting.

When I am more stable i’ve noticed lows often correct themselves without me having to intervene (glycogen kicking in?) and I can tolerate more. When i’m oscillating due to a spike I am extremely sensitive to almost every food, and unless I treat a hypo it seems to just keep going down or stay low until I do something about it. I also feel completely terrible when my sugar is going up and down in that sort of wave motion, even if it’s quite subtle I still feel these massive bouts of anxiety and sometimes panic attacks which are unusual for me and stress seems to worsen drops. When it’s climbing smoothly (bit of a rare occurance currently) I can think so much more clearly and feel more at ease.

My cortisol levels weren’t scarily low but definitely on the low side which could be a clue, I know cortisol counteracts insulin spikes to an extent so will definitely be useful to investigate that further. Maybe why it’s shooting about so aggressively rather than going up gently. And I did want to look into checking out my gut bacteria to see if that was worsening everything, I am experiencing a lot of digestive distress and pain so would not be surprised if something was not right. Maybe a hormonal imbalance / digestive issue combined is making me much worse and with treatment I could get on top of this a lot better, but I can only speculate!

I’m currently high protein / fat and low carb but not fully keto! Your idea of a food diary sounds great and will definitely help identify what’s best for me, so far avocados and omelettes seem to be my friend! I think if I do go for the keto diet which seems to have been very successful for some people, I might have to consider going at least pescatarian to get some good nutrients in for enough energy, currently I have very little- I did at one point have a very active life and would love to return to that as it’s how I thrive best but not sure how far-fetched that is! can only try my best for now and hope for some help from my endocrinologist

also I think you’re right about me going hyper and that causing some of my problems, I quickly gave up having carb based meals after I started using the monitor and saw how they were affecting me so am not too sure how high I was going whilst eating “normally”! I went up to 9.7 at worst on the libre after eating brown rice which isn’t crazy high, but it’s definitely not right and I shot into hypo very quickly after it, even with snacks in an attempt to prevent the drop!! there was a point where I was eating pasta, granola, biscuits, pizza, scones, pastries ect - wonder what was happening then, probably a bigger reaction than brown rice. I have (mild) nerve damage which I hope I can reverse by staying in range. but like i’ve mentioned I’ve tested negative for diabetes and hope i’ve not caused any sort of insulin resistance from my unstable sugar levels.

sorry again for the info overload but I have found it really interesting reading about everyone else and thought I’d share my experiences! hope I can learn to better manage everything

Thanks so much rosie04 for your detailed post - and everyone who has responded. All incredibly useful info for others going down the libre track on their own for the first time.

 

[rosie04]

Thanks so much rosie04 for your detailed post - and everyone who has responded. All incredibly useful info for others going down the libre track on their own for the first time.

That’s no worries at all, I think without discovering the libres I would have become seriously unwell or faced the more dangerous effects of hypos! even though they’re not always fully accurate at times they’re such an incredible piece of technology- best of luck if you’re going down that route )

 

[Antje77]

Will certainly double check on the meter next time if the reading looks odd! and yes I get loads of lows at night (i’ve had this with several sensors so can’t just be that this is a faulty one) wondering if some of them are me accidentally leaning on the sensor! really inconvenient if they’re misreadings as it sets off an alarm and wakes me up

For what it's worth, I'm a T1 and have used Libre for over 6 years.
I couldn't do so without also using fingerpricks, for me, Libres tend to read lower than blood by 0.8-2.0 mmol/l. For others, the Libre tends to read a tad higher than blood, and some find they are usually spot on.

Fingerpricks are great for absolute numbers, Libre is wonderful for patterns and trends, and to be aware you're dropping before you're actually low.
Because my Libres are consistently reading lower than blood, I use an alternative app in tandem to the official LibreLink app. This app called DiaBox has the possibility to calibrate, and it allows for more different alarm settings.
Not in the playstore, and only on Android I think.
There are different alternative apps for iPhone, just ask if you're interested, we have many members knowing how to set them up.

 

[rosie04]

For what it's worth, I'm a T1 and have used Libre for over 6 years.
I couldn't do so without also using fingerpricks, for me, Libres tend to read lower than blood by 0.8-2.0 mmol/l. For others, the Libre tends to read a tad higher than blood, and some find they are usually spot on.

Fingerpricks are great for absolute numbers, Libre is wonderful for patterns and trends, and to be aware you're dropping before you're actually low.
Because my Libres are consistently reading lower than blood, I use an alternative app in tandem to the official LibreLink app. This app called DiaBox has the possibility to calibrate, and it allows for more different alarm settings.
Not in the playstore, and only on Android I think.
There are different alternative apps for iPhone, just ask if you're interested, we have many members knowing how to set them up.

Ah thank you so much for the help! Did some finger pricks today and was a little out from the libre & not spot on. I understand it’s a delayed reading too since it’s measuring Interstitial fluid rather than your actual blood- I did notice I felt that low yesterday quite a while before seeing it on the graph! + as i’m sure you know it misreads sometimes in low / high temps so it’s definitely not something I can totally rely on but you’re so right about it being useful to spot patterns and help with identifying triggers as such. Things seem to be going much smoother today with a lovely walk factored in, I really am trying my best and looks like my metabolism can occasionally decide to work when nudged in the right direction, hoping it doesn’t randomly decide to fly down again

 

[Antje77]

Things seem to be going much smoother today with a lovely walk factored in, I really am trying my best and looks like my metabolism can occasionally decide to work when nudged in the right direction, hoping it doesn’t randomly decide to fly down again

That's a beautiful graph, I'll have my fingers crossed it'll stay that way!

 

[Lamont D]

Totally agree with @Antje77, I could do with them results.

Just to add, you will be able to see patterns and trends when you start experimenting and being more in control.
With using your graphs, readings and testing around meals, in your food diary.

Take care, keep asking, best wishes.