Hypos after Exercise

[LisaHolly]

Hi,

Need some help with exercise.
I was diagnosed 2 years ago with RH and I follow a low carbohydrate diet, eat every 2 to 3 hours and take 1000mg of metformin.

I used to be able to exercise for an hour and be fine (before RH) but nowadays I really have to watch the amount of time and what I do. The more cardio intensive it is the worse my blood sugar drops. I can now only manage 5 to 10 mins of cycling or just 20 mins of weights. And I always have low blood sugar afterwards (between 3 and 4.1) and need to do a recovery which consists of 3 dextrose tablets followed by peanut butter on wholewheat toast.

It feels very frustrating and a little counter productive when I have to do a recovery every time. I want to be healthy but my Endocrinologist doesn't offer up much help with this matter, he just says do a recovery if needed and only do small amounts of exercise and keep the weight down.

So I was wondering if anyone had any success with exercise and how you go about reducing the need for a recovery afterwards.

Thanks,
Lisa

 

[Brunneria]

Hi and welcome @LisaHolly

My first reaction, on reading your post is that if you were in ketosis, and fat adapted, then your bg would not drop like a stone when exercising, and you wouldn't need carbs to recover. Your stamina would be better too. Depending on my insulin resistance level, I might see a drop in bg, but not to hypo levels, and I would see my bg stay low and steady until my insulin resistance rose again. But that is my experience of RH and keto and exercise, so I am not assuming that your experience would be identical to mine.

Having said that, being in ketosis is better for endurance than for sprints, so it would rather depend on the type of exercise you are doing, and the intensity.

My body would not benefit from dextrose and bread to recover from hypos. In fact, that would push my blood glucose into a more unstable state and make the next hypo more likely... I find the best prep for sustained exercise is to eat well the day before, or several hours before. Very low carb or keto food. Then the body just uses that and ketones as fuel throughout the exercise.

Do you know how many g of carbs you are eating a day? We are all different, and our carb tolerance is likely to be unique, but if I were experiencing what you are describing, I would be pretty certain that I was eating too many carbs, not fully fat adapted, and my body wasn't in ketosis (because ketosis would be giving me a steady, reliable, almost limitless source of energy to fuel my exercise).

Hope that helps!

 

[Lamont D]

Hi,

Need some help with exercise.
I was diagnosed 2 years ago with RH and I follow a low carbohydrate diet, eat every 2 to 3 hours and take 1000mg of metformin.

I used to be able to exercise for an hour and be fine (before RH) but nowadays I really have to watch the amount of time and what I do. The more cardio intensive it is the worse my blood sugar drops. I can now only manage 5 to 10 mins of cycling or just 20 mins of weights. And I always have low blood sugar afterwards (between 3 and 4.1) and need to do a recovery which consists of 3 dextrose tablets followed by peanut butter on wholewheat toast.

It feels very frustrating and a little counter productive when I have to do a recovery every time. I want to be healthy but my Endocrinologist doesn't offer up much help with this matter, he just says do a recovery if needed and only do small amounts of exercise and keep the weight down.

So I was wondering if anyone had any success with exercise and how you go about reducing the need for a recovery afterwards.

Thanks,
Lisa

Hi and welcome to our forum
After diagnosis I still had quite a bit of weight to shift and I then didn't have full time work to help. So I thought do more, do some running, do more of anything to help with getting good control by using exercise as part of my treatment and management of RH. Of course with dietary adjustments and my endocrinologist insisting I do more.
But , like you, the more exercise I did, regardless of dietary changes, I could not get control. It wasn't until I read about how the body works when doing too much, did it occur to me that depending on how your body copes with strenuous exercise and how it can effect your blood glucose levels.
For me, if I do too much even though it can be stupid, I get a liver dump, and that triggers the high blood glucose levels enough to cause the hypo afterwards.
If, like now, I can work all day, have great energy levels, keep my good control because of having very few carbs, if I eat, then go home and go for a run, then my body reacts similar if I had eaten a high carb meal.

So, since then, I have found that doing quite gentle exercise on a very low carb diet is easier to keep better control. I walk more, and found that doing fifteen minutes walk fifteen minutes after a low carb meal is absolutely great for control.
Swimming is good, as is some weight training.
Now working full time and no need for doing extra because my weight has stabilised and using a Keto diet along with intermittent fasting, have not had a hypo for ages.

You have to be aware that the recovery for the hypo you are taking will almost always cause the trigger for another hyper/hypo rollercoaster ride, this is called the rebound effect. By treating the hypo by what triggers another episode with high carbs, you will cause another overshoot of insulin.
The only way to treat a hypo is by nudging your blood glucose levels back into normal levels by a few carbs, then testing fifteen minutes after, if it is in normal levels then eat a small low carb meal, if it is too high wait until you feel the hypo coming back, then eat a low carb meal. Don't have dextrose tablets, find another food by testing to get your blood glucose levels back into normal, a single plain biscuit does it for me or a piece of fruit(small) others use cheese if you can tolerate dairy, carbs will not help.
Do you keep a food diary, this will help with dietary choices. If you are still having episodes of hypoglycaemia other than exercise, a Keto diet is recommended.
If you are told that low GI foods are okay, if you are like me, there is no difference, it is too much, so called healthy low GI foods are not healthy for me or probably you, you have to know which foods you have an intolerance to, mine are quite a lot and finding out what you are okay with is so important.
Most RH ers, have an intolerance to wheat, starchy vegetables, rice, tropical fruits and so on and anything that is manufactured and most oils that have been used for cooking.
A balanced low carb diet is a must, getting your fat intake right will help with portion control. And you may discover like I did that you don't have to eat every three hours because being in normal levels, you won't go hypo.
No carbs, no hyper, no trigger, no overshoot, no hypo.

My endocrinologist took me off metformin straight away, on my first visit to him.
I can understand if it is necessary, but I have not seen any reason for those with RH to take the drug. Have you been told the reason for taking it?

Stay safe

 

[LisaHolly]

Hi Brunneria,

Thanks so much for your reply and all the information you gave.

I would say I am eating too many carbs especially when I am going to exercise.
I think ketosis is definitely worth a try for me, as I am getting desperate at this point and getting worse. I have tried coming off the Metformin and tried Acrobose just to see if that made a deference, but I was worse over all and I had stomach issues.

I had a carb free lunch just to try it and so far so good, I've tested my blood sugar and after 3 hours it is still stable. Plus normally I would be looking for something else to eat by now. I understand that is just one meal but I'm willing to keep going if the results are good!!

And your right having dextrose tabs and bread after a crash does make you more unstable over all, that's why I felt doing exercise was meant to be good but for me had some bad side effects that were not good over all.

Thanks again for your help and quick response.

I will look into those links you sent!!

Lisa

 

[LisaHolly]

Hi Lamont D,

Thanks so much for your reply and all the information you gave especially on food.

I too had some weight to loose after diagnosis, I tend to store it on my belly which is bad I was told for RH.
I have since then lost the weight but have managed to put some of it back on trying to control my RH again as it seems to have worsened. After Christmas I got a bit slack with my diet and have paid the price, plus I tried to come off Metformin and go onto Acrobose which was a disaster. My endocrinologist says I'm on the metformin to make me more stable, increase my glucose tolerance and prevent diabetes.

In regards to fasting I am definitely not stable enough and can't seem to go longer than 3 hours without food.
But hopefully once I have reduced my carb intake and hopefully made the change over to a Keto diet I will be better. I am currently on a diet where I eat less carbs and mostly all of them are low GI but it is still problematic and exercise just throws me over the edge. I will have to look into the liver dump thing because I think that is what is happening.

I experience a lot anxiety and confusion when I'm having a hypo after exercise but will try the things you suggested.

Thanks so much for your help and suggestions I do appreciate it!!

Lisa

 

[Lamont D]

Hi Lamont D,

Thanks so much for your reply and all the information you gave especially on food.

I too had some weight to loose after diagnosis, I tend to store it on my belly which is bad I was told for RH.
I have since then lost the weight but have managed to put some of it back on trying to control my RH again as it seems to have worsened. After Christmas I got a bit slack with my diet and have paid the price, plus I tried to come off Metformin and go onto Acrobose which was a disaster. My endocrinologist says I'm on the metformin to make me more stable, increase my glucose tolerance and prevent diabetes.

In regards to fasting I am definitely not stable enough and can't seem to go longer than 3 hours without food.
But hopefully once I have reduced my carb intake and hopefully made the change over to a Keto diet I will be better. I am currently on a diet where I eat less carbs and mostly all of them are low GI but it is still problematic and exercise just throws me over the edge. I will have to look into the liver dump thing because I think that is what is happening.

I experience a lot anxiety and confusion when I'm having a hypo after exercise but will try the things you suggested.

Thanks so much for your help and suggestions I do appreciate it!!

Lisa

Hi again,
Yeah, I think you know now what needs to be done and because it is quite rare and the medical dietary advice is so wrong for us, it wasn't until I found this site that I discovered that the dietary advice on here suited me up to a point, but after a lot of testing, I decided to go Keto.
This has worked for me in such a way that my health is so good, I've been released by my endocrinologist, and all my annual review results are good.

If you have time, have a look at the threads about the diversity of RH and Hypoglycaemia conditions. It is an individual condition and we have to tailor our dietary intake to make sure we get the right balance of protein and fats.
I only use fresh food, animal fats, cook everything myself including salad!!!! (I mean prepare! ) it sounds bad and time consuming but it's not!

I agree, take your time about changing to more than a couple of meals a day instead of the three hours meals, you will probably get good control within a couple of weeks. You might get what is known as carb flu, but you have reduced your carbs already so it might not be a problem for you.

What tests have you had?

Stay safe

 

[Leah96]

Hi and welcome @LisaHolly

My first reaction, on reading your post is that if you were in ketosis, and fat adapted, then your bg would not drop like a stone when exercising, and you wouldn't need carbs to recover. Your stamina would be better too. Depending on my insulin resistance level, I might see a drop in bg, but not to hypo levels, and I would see my bg stay low and steady until my insulin resistance rose again. But that is my experience of RH and keto and exercise, so I am not assuming that your experience would be identical to mine.

Having said that, being in ketosis is better for endurance than for sprints, so it would rather depend on the type of exercise you are doing, and the intensity.

My body would not benefit from dextrose and bread to recover from hypos. In fact, that would push my blood glucose into a more unstable state and make the next hypo more likely... I find the best prep for sustained exercise is to eat well the day before, or several hours before. Very low carb or keto food. Then the body just uses that and ketones as fuel throughout the exercise.

Do you know how many g of carbs you are eating a day? We are all different, and our carb tolerance is likely to be unique, but if I were experiencing what you are describing, I would be pretty certain that I was eating too many carbs, not fully fat adapted, and my body wasn't in ketosis (because ketosis would be giving me a steady, reliable, almost limitless source of energy to fuel my exercise).

Hope that helps!

Hello! I have just started the Keto diet and blood sugars have been very stable since Monday (between 4 and 9), but I have read up that it is possible for type 1s to go into Ketoacidosis due to lack of food and lack of insulin (I always thought DKA was due to high bloods which is why I’m a little confused). I’m taking around 2-3 units of insulin per day on Keto, however today I have not had to take any rapid insulin today, because I am sticking to 20g of Carb per day and take 1 unit per 10g Carb (20g has been spread out over 3 meals and breakfast was to treat a hypo). I am still taking my long acting (Tresiba) each night but waking up with hypos In the morning.
Because I’ve read that DKA can happen with lack of food and insulin I was a little worried about the Keto diet, if you could offer any advice at all?
Thanks!

 

[Jaylee]

Hello! I have just started the Keto diet and blood sugars have been very stable since Monday (between 4 and 9), but I have read up that it is possible for type 1s to go into Ketoacidosis due to lack of food and lack of insulin (I always thought DKA was due to high bloods which is why I’m a little confused). I’m taking around 2-3 units of insulin per day on Keto, however today I have not had to take any rapid insulin today, because I am sticking to 20g of Carb per day and take 1 unit per 10g Carb (20g has been spread out over 3 meals and breakfast was to treat a hypo). I am still taking my long acting (Tresiba) each night but waking up with hypos In the morning.
Because I’ve read that DKA can happen with lack of food and insulin I was a little worried about the Keto diet, if you could offer any advice at all?
Thanks!

Hi,

Hello, & welcome to the forum. I'm no "guru" on this but I'll try to break it down.
In a keto diet with normal stable BGs, its a state of ketosis. As fat is burned for fuel also. Edited to add, or "nutritional Ketosis."

Are you T1?

High BGs due to no insulin with keytones. (Also a portion of fat burned as the body cannot utilise the sugar in the blood.) ketoacidosis.

Please feel welcome to start your own topic, & our friendly forum team will tag in keto insulin dependant members to help.
Or if you wish I could move your post & set up your own topic?

Hope this helps.

 

[Brunneria]

Hello! I have just started the Keto diet and blood sugars have been very stable since Monday (between 4 and 9), but I have read up that it is possible for type 1s to go into Ketoacidosis due to lack of food and lack of insulin (I always thought DKA was due to high bloods which is why I’m a little confused). I’m taking around 2-3 units of insulin per day on Keto, however today I have not had to take any rapid insulin today, because I am sticking to 20g of Carb per day and take 1 unit per 10g Carb (20g has been spread out over 3 meals and breakfast was to treat a hypo). I am still taking my long acting (Tresiba) each night but waking up with hypos In the morning.
Because I’ve read that DKA can happen with lack of food and insulin I was a little worried about the Keto diet, if you could offer any advice at all?
Thanks!

Hi and welcome to the forum @Leah96

are you a Type 1 diabetic?

The condition we are talking about on this thread is something called Reactive Hypoglycaemia. It is very different from Type 1 diabetes, in that people with T1 Don’t produce enough insulin, and need to inject it. If their injections do not precisely match their carb intake, they may hypo.

In contrast, people with RH usually have plenty of their own insulin, and over produce it - which causes hypos.

Have you read up on the differences between nutritional ketosis (sufficient insulin, low blood glucose levels, and ketones) and ketoacidosis (insufficient insulin, high blood glucose, and ketones).
https://www.medicalnewstoday.com/articles/324237#symptoms-of-ketoacidosis

Are you confident adjusting your insulin to your new lower carb levels?
If you are waking up to hypos each morning, as a new situation following changing your diet, you may need to adjust your insulin injections.

If you ever experience the symptoms of ketoacidosis, whether with high or low insulin levels, and ketones, then please seek medical attention!

I hope that helps.

ed for clarity

 

[LisaHolly]

Hi again,
Yeah, I think you know now what needs to be done and because it is quite rare and the medical dietary advice is so wrong for us, it wasn't until I found this site that I discovered that the dietary advice on here suited me up to a point, but after a lot of testing, I decided to go Keto.
This has worked for me in such a way that my health is so good, I've been released by my endocrinologist, and all my annual review results are good.

If you have time, have a look at the threads about the diversity of RH and Hypoglycaemia conditions. It is an individual condition and we have to tailor our dietary intake to make sure we get the right balance of protein and fats.
I only use fresh food, animal fats, cook everything myself including salad!!!! (I mean prepare! ) it sounds bad and time consuming but it's not!

I agree, take your time about changing to more than a couple of meals a day instead of the three hours meals, you will probably get good control within a couple of weeks. You might get what is known as carb flu, but you have reduced your carbs already so it might not be a problem for you.

What tests have you had?

Stay safe

Hi Lamont,

Yeah thanks, I'm going to give the keto diet a try and see how I get on
Can't believe you have been released by your endocrinologist and off meds, so there is hope to be had!! Think I just gave up for a while and thought this was the best it could be. I had a look at carb flu and the symptoms look horrible but I am mostly low carb so hopefully wont get them too badly.

I am due for some more blood tests soon, but so far I have tested negative for diabetes and only have medium rage RH. My fasting glucose test was 5.3 but unfortunately I don't remember the results for the glucose tolerance test.

I recently went to see the dietitian but thought they were very unhelpful and just keep saying the same things. Initially I was put on a diet by the British Heart Foundation and then the Low GI one, which was much better.

But thank you for all your help and suggestions and hopefully the Keto diet works out!

Thanks again,

Lisa

 

[Lamont D]

Hi Lamont,

Yeah thanks, I'm going to give the keto diet a try and see how I get on
Can't believe you have been released by your endocrinologist and off meds, so there is hope to be had!! Think I just gave up for a while and thought this was the best it could be. I had a look at carb flu and the symptoms look horrible but I am mostly low carb so hopefully wont get them too badly.

I am due for some more blood tests soon, but so far I have tested negative for diabetes and only have medium rage RH. My fasting glucose test was 5.3 but unfortunately I don't remember the results for the glucose tolerance test.

I recently went to see the dietitian but thought they were very unhelpful and just keep saying the same things. Initially I was put on a diet by the British Heart Foundation and then the Low GI one, which was much better.

But thank you for all your help and suggestions and hopefully the Keto diet works out!

Thanks again,

Lisa

Hi, hope your change to Keto works for you as it did for me, if you have a similar type of hypoglycaemia as me, it is non diabetic, simply because your hba1c and fasting levels are in the normal range. It used to be called idiopathic post prandial hypoglycaemia, most of those who had similar symptoms as me years ago were probably like me misdiagnosed as type two because at the time, I was always in high blood glucose readings, often in the afternoon mid to high teens because I had porridge for breakfast and often than not a baked spud for lunch, this was the healthy diet recommended for me for well over a decade. But always with my fasting levels were in normal range!
Once I started keeping a food diary, my endocrinologist after a referral, as I said over a decade of battling with my doctors, noticed the consistent normal fasting levels.
That is why I always recommend keeping a food diary.

I'm on meds, but not metformin.
I am on sitagliptin, this is like an insurance, in case I go too high that would trigger the insulin overshoot. It is a drug which helps with my very weak insulin response after any food, but I would still go hypo. My last eOGTT, I went up to only 8mmols, but I still went hypo.
Am also on a hypertension drug and aspirin.
Another thing that you may have to look out for, is of course medication.
Because of most drugs are either made of sugar in one form or another, then that is a problem, because it will effect the potency of the drug and of course all cold and flu meds are totally sugar based and will cause hypos.
Paracetamol is okay and you can get sugar free meds.
Another problem for me is some tablets are made with lactose, as I'm lactose intolerant!

I was released because of working and traveling commitments. And I still have his email address and phone number. There was no need to go to see him after a couple of years post diagnosis because of how well I was doing, as long as I had my usual checks at my GPs.

Let us know how you get on

Keep safe

 

[Rubyjewelz]

Hi Lamont,

Yeah thanks, I'm going to give the keto diet a try and see how I get on
Can't believe you have been released by your endocrinologist and off meds, so there is hope to be had!! Think I just gave up for a while and thought this was the best it could be. I had a look at carb flu and the symptoms look horrible but I am mostly low carb so hopefully wont get them too badly.

I am due for some more blood tests soon, but so far I have tested negative for diabetes and only have medium rage RH. My fasting glucose test was 5.3 but unfortunately I don't remember the results for the glucose tolerance test.

I recently went to see the dietitian but thought they were very unhelpful and just keep saying the same things. Initially I was put on a diet by the British Heart Foundation and then the Low GI one, which was much better.

But thank you for all your help and suggestions and hopefully the Keto diet works out!

Thanks again,

Lisa

Hello, I have been a ketonian for 3 years , my doctor was so pleased when i brought my blood levels right dow, he said..carry on doing what you're doing...it's easy to follow...fatty meat, vege berries and Greek fat yogurt and heavy cream...what's not to like..Just stick with it...it's a way of life...not a quick diet..x
.x

 

[Rubyjewelz]

Hello, I have been a ketonian for 3 years , my doctor was so pleased when i brought my blood levels right dow, he said..carry on doing what you're doing...it's easy to follow...fatty meat, vege berries and Greek fat yogurt and heavy cream...what's not to like..Just stick with it...it's a way of life...not a quick diet..x
.x

Hi, hope your change to Keto works for you as it did for me, if you have a similar type of hypoglycaemia as me, it is non diabetic, simply because your hba1c and fasting levels are in the normal range. It used to be called idiopathic post prandial hypoglycaemia, most of those who had similar symptoms as me years ago were probably like me misdiagnosed as type two because at the time, I was always in high blood glucose readings, often in the afternoon mid to high teens because I had porridge for breakfast and often than not a baked spud for lunch, this was the healthy diet recommended for me for well over a decade. But always with my fasting levels were in normal range!
Once I started keeping a food diary, my endocrinologist after a referral, as I said over a decade of battling with my doctors, noticed the consistent normal fasting levels.
That is why I always recommend keeping a food diary.

I'm on meds, but not metformin.
I am on sitagliptin, this is like an insurance, in case I go too high that would trigger the insulin overshoot. It is a drug which helps with my very weak insulin response after any food, but I would still go hypo. My last eOGTT, I went up to only 8mmols, but I still went hypo.
Am also on a hypertension drug and aspirin.
Another thing that you may have to look out for, is of course medication.
Because of most drugs are either made of sugar in one form or another, then that is a problem, because it will effect the potency of the drug and of course all cold and flu meds are totally sugar based and will cause hypos.
Paracetamol is okay and you can get sugar free meds.
Another problem for me is some tablets are made with lactose, as I'm lactose intolerant!

I was released because of working and traveling commitments. And I still have his email address and phone number. There was no need to go to see him after a couple of years post diagnosis because of how well I was doing, as long as I had my usual checks at my GPs.

Let us know how you get on

Keep safe

 

[LisaHolly]

Hi, hope your change to Keto works for you as it did for me, if you have a similar type of hypoglycaemia as me, it is non diabetic, simply because your hba1c and fasting levels are in the normal range. It used to be called idiopathic post prandial hypoglycaemia, most of those who had similar symptoms as me years ago were probably like me misdiagnosed as type two because at the time, I was always in high blood glucose readings, often in the afternoon mid to high teens because I had porridge for breakfast and often than not a baked spud for lunch, this was the healthy diet recommended for me for well over a decade. But always with my fasting levels were in normal range!
Once I started keeping a food diary, my endocrinologist after a referral, as I said over a decade of battling with my doctors, noticed the consistent normal fasting levels.
That is why I always recommend keeping a food diary.

I'm on meds, but not metformin.
I am on sitagliptin, this is like an insurance, in case I go too high that would trigger the insulin overshoot. It is a drug which helps with my very weak insulin response after any food, but I would still go hypo. My last eOGTT, I went up to only 8mmols, but I still went hypo.
Am also on a hypertension drug and aspirin.
Another thing that you may have to look out for, is of course medication.
Because of most drugs are either made of sugar in one form or another, then that is a problem, because it will effect the potency of the drug and of course all cold and flu meds are totally sugar based and will cause hypos.
Paracetamol is okay and you can get sugar free meds.
Another problem for me is some tablets are made with lactose, as I'm lactose intolerant!

I was released because of working and traveling commitments. And I still have his email address and phone number. There was no need to go to see him after a couple of years post diagnosis because of how well I was doing, as long as I had my usual checks at my GPs.

Let us know how you get on

Keep safe

Hi Again,

Gosh your condition sounds a lot worse than mine, and I feel hampered :| but your are right if I can get the diet right I should start feeling much better and safer.
I always thought people with RH have a really strong insulin response after carbs and that's whats causing the problems, why is yours weak? And why would you have a hypo after? Are you not then closer to being Diabetic? Sorry, just really interested, but you don't have to go into it if you don't want to. It all seems very variable and I hate that Doctors don't seem to know much about this. I just had a really bad experience with my local DR who was meant to monitor my new meds but said she really knows nothing about this condition and was not willing to do as my specialist asked.

I think I have had symptoms for a long very long time and the first Doctor I saw put me on anti anxiety meds which made it worse. It took another year to find a Doctor who knew what was wrong. Wish it had a proper name and wasn't so rare.

Thanks for the advice about meds with sugar. I mostly just take paracetamol.
Going to start a food diary as you suggested and start testing to see what works and what doesn't.
Got to admit I'm a bit anxious about going Keto because of the repercussions if it goes wrong as I am not yet stable, well I have never been stable just a bit better on the low carb diet. Plus I have just come out of a disastrous couple of weeks trying a new medication. So I thought I'd go slow and take it one step at a time or at least one meal at a time LOL

Oh yes on your first reply you mentioned when you do a recovery you eat a small carbohydrate meal. Could you be specific as the to the steps you take and what you eat and how long it takes to recover and how low your blood sugar level is when you do a recovery.

Thanks for all your help with this if's great to know there are other people out there with he same issues.

Lisa

 

[Lamont D]

Hi Again,

Gosh your condition sounds a lot worse than mine, and I feel hampered :| but your are right if I can get the diet right I should start feeling much better and safer.
I always thought people with RH have a really strong insulin response after carbs and that's whats causing the problems, why is yours weak? And why would you have a hypo after? Are you not then closer to being Diabetic? Sorry, just really interested, but you don't have to go into it if you don't want to. It all seems very variable and I hate that Doctors don't seem to know much about this. I just had a really bad experience with my local DR who was meant to monitor my new meds but said she really knows nothing about this condition and was not willing to do as my specialist asked.

I think I have had symptoms for a long very long time and the first Doctor I saw put me on anti anxiety meds which made it worse. It took another year to find a Doctor who knew what was wrong. Wish it had a proper name and wasn't so rare.

Thanks for the advice about meds with sugar. I mostly just take paracetamol.
Going to start a food diary as you suggested and start testing to see what works and what doesn't.
Got to admit I'm a bit anxious about going Keto because of the repercussions if it goes wrong as I am not yet stable, well I have never been stable just a bit better on the low carb diet. Plus I have just come out of a disastrous couple of weeks trying a new medication. So I thought I'd go slow and take it one step at a time or at least one meal at a time LOL

Oh yes on your first reply you mentioned when you do a recovery you eat a small carbohydrate meal. Could you be specific as the to the steps you take and what you eat and how long it takes to recover and how low your blood sugar level is when you do a recovery.

Thanks for all your help with this if's great to know there are other people out there with he same issues.

Lisa

Hi again,

You are quite right RH is about a strong insulin response (an overshoot its called) after carbs, but it doesn't happen straight away.
Depending on how insulin resistance and how much background insulin you have, the response is variable straight after eating any amount of carbs or even to some extent protein and fats, these are very low or none at all. When I had my glucose tolerance test, because I hadn't been on a Keto diet, and my carb intake levels and insulin levels were still high, my first reading after half an hour was over ten climbing to mid teens after an hour. So because of this on my next glucose tolerance test because my endocrinologist was trying to find what was going on, he took a lot of blood panel tests including pre test insulin levels. His assumption that my initial insulin levels were low due to the overload of glucose then taken showed that once I was in normal levels, my initial insulin response is weak. There is a condition or at this stage of the process called glucose dumping, because of the very quick glucose spikes, also there is a part of this that some doctors called glucose tolerance syndrome but this is not necessary for me.
This is why some doctors call it idiopathic, because why this is, is baffling to them.
Once you have gone past a certain level of higher blood glucose levels, your brain reacts by sending a signal to your pancreas to get it going to react to the higher levels. (The trigger)
So your insulin response (the overshoot) responds and over the next couple of hours
Your blood glucose levels start to drop towards back to normal. If you were normal, (sorry!) or T2 without RH, your blood glucose levels would go back roughly to as near normal as they were pre carbs, glucose.
The trouble with RH is that the amount of insulin produced is too much, so this drives the blood glucose down into hypo levels.
If you are aware of this happening, a doctor who doesn't understand the process, would give you something similar to high GI or glucose, sugars or bread to push the blood glucose back into normal levels. But because we are weird, and we are! This would cause what is known as a rebound effect, this means that the treatment would make you spike again, trigger a overshoot (again), then drive back into hypo levels.
This rollercoaster ride of blood glucose levels is what causes all the symptoms, which is quite a lot, and that is why when we say, no hyper, no hypo, to stop the symptoms, your body is happier in or near normal levels.

So, if I had a hypo, my usual trick is to eat a rich tea biscuit after taking a reading, then testing every fifteen minutes to see if it has nudged me back into normal levels. If it does, I eat a low carb meal and test after fifteen minutes to see if I have stabilised.
If it hasn't, and it is low, have another biscuit, then check, until I'm satisfied I'm stable. Then eat that low carb meal. Keeping an eye on my levels through the day.

Yeah take it easy, one reason is that your body does not like initially to go into ketosis, it will take time to get used to the normal levels after going through the highs and lows of not having good control.
One of the first things that you will notice when getting good control, in or near east levels is your energy levels and your brain starts to work as it should do, I don't know about you, but I've had brain function problems including anxiety during my battle to get back to health. A lot of brain function symptoms are included in the long list of symptoms for RH, and non are the same symptoms, it differs from person to person.

I have been called weird by my GP (at the time) after diagnosis and my endocrinologist concurred that RH is abnormal, not many people get an overshoot of insulin. And this is why most doctors have no knowledge of the process and why it happens, they have not had the training or knowledge of Hypoglycaemia given to them. Even some endocrinologists including one I had fifteen years ago, didn't have a clue what was happening to me.
It is getting more known in medical practice especially at higher endocrinologist circles. You like me were lucky to find one who recognised the symptoms and knew how to diagnose it. If like some they are stuck at GPs surgery levels and getting misdiagnosed like I was with T2. And getting worse!

Keep safe

Keep asking, knowledge is key in understanding how to get control.

A breast of roast chicken is asking for my attention!

 

[Brunneria]

Hi @LisaHolly

you may find this link useful.
https://www.medscape.org/viewarticle/483307_4
it is aimed more at T2 diabetes rather than RH, but it goes a long way to explain the 1st and 2nd phase insulin responses, and also sheds light on why so many RHers eventually develop T2 diabetes.

 

[LisaHolly]

Hi again,

You are quite right RH is about a strong insulin response (an overshoot its called) after carbs, but it doesn't happen straight away.
Depending on how insulin resistance and how much background insulin you have, the response is variable straight after eating any amount of carbs or even to some extent protein and fats, these are very low or none at all. When I had my glucose tolerance test, because I hadn't been on a Keto diet, and my carb intake levels and insulin levels were still high, my first reading after half an hour was over ten climbing to mid teens after an hour. So because of this on my next glucose tolerance test because my endocrinologist was trying to find what was going on, he took a lot of blood panel tests including pre test insulin levels. His assumption that my initial insulin levels were low due to the overload of glucose then taken showed that once I was in normal levels, my initial insulin response is weak. There is a condition or at this stage of the process called glucose dumping, because of the very quick glucose spikes, also there is a part of this that some doctors called glucose tolerance syndrome but this is not necessary for me.
This is why some doctors call it idiopathic, because why this is, is baffling to them.
Once you have gone past a certain level of higher blood glucose levels, your brain reacts by sending a signal to your pancreas to get it going to react to the higher levels. (The trigger)
So your insulin response (the overshoot) responds and over the next couple of hours
Your blood glucose levels start to drop towards back to normal. If you were normal, (sorry!) or T2 without RH, your blood glucose levels would go back roughly to as near normal as they were pre carbs, glucose.
The trouble with RH is that the amount of insulin produced is too much, so this drives the blood glucose down into hypo levels.
If you are aware of this happening, a doctor who doesn't understand the process, would give you something similar to high GI or glucose, sugars or bread to push the blood glucose back into normal levels. But because we are weird, and we are! This would cause what is known as a rebound effect, this means that the treatment would make you spike again, trigger a overshoot (again), then drive back into hypo levels.
This rollercoaster ride of blood glucose levels is what causes all the symptoms, which is quite a lot, and that is why when we say, no hyper, no hypo, to stop the symptoms, your body is happier in or near normal levels.

So, if I had a hypo, my usual trick is to eat a rich tea biscuit after taking a reading, then testing every fifteen minutes to see if it has nudged me back into normal levels. If it does, I eat a low carb meal and test after fifteen minutes to see if I have stabilised.
If it hasn't, and it is low, have another biscuit, then check, until I'm satisfied I'm stable. Then eat that low carb meal. Keeping an eye on my levels through the day.

Yeah take it easy, one reason is that your body does not like initially to go into ketosis, it will take time to get used to the normal levels after going through the highs and lows of not having good control.
One of the first things that you will notice when getting good control, in or near east levels is your energy levels and your brain starts to work as it should do, I don't know about you, but I've had brain function problems including anxiety during my battle to get back to health. A lot of brain function symptoms are included in the long list of symptoms for RH, and non are the same symptoms, it differs from person to person.

I have been called weird by my GP (at the time) after diagnosis and my endocrinologist concurred that RH is abnormal, not many people get an overshoot of insulin. And this is why most doctors have no knowledge of the process and why it happens, they have not had the training or knowledge of Hypoglycaemia given to them. Even some endocrinologists including one I had fifteen years ago, didn't have a clue what was happening to me.
It is getting more known in medical practice especially at higher endocrinologist circles. You like me were lucky to find one who recognised the symptoms and knew how to diagnose it. If like some they are stuck at GPs surgery levels and getting misdiagnosed like I was with T2. And getting worse!

Keep safe

Keep asking, knowledge is key in understanding how to get control.

A breast of roast chicken is asking for my attention!

Hi,

I think you have got it in one we are "weird" or "rare" at the very least!!

Thanks for your very descriptive explanations, I do appreciate it!!

Been doing the keto thing for a couple of days now and I must say my blood sugar levels have never been so steady, it's amazing really it is!! Tried a carb supper last night cause I was feeling lazy. I am never doing that again I crashed hard 2 hours later and had to do a recovery. Did try and calm myself down and try your method of a biscuit and waiting 15mins instead of hitting the dextrose tabs, and it worked. Thanks for that!!

I have yet to do any exercise but I thought I'd take it easy and get used to the diet changes because I have anxiety issues. And unfortunately my RH activates that big time. Plus I need to tackle the extra weight I have put on over the last couple of months trying to change meds and control my RH, but I will get to that too. But over all I feel a lot more mentally stable now too because I'm a lot less worried about my health.

Oh yeah when you have a small carb meal what does that consist of?

Keep safe,

Lisa

 

[LisaHolly]

Hi @LisaHolly

you may find this link useful.
https://www.medscape.org/viewarticle/483307_4
it is aimed more at T2 diabetes rather than RH, but it goes a long way to explain the 1st and 2nd phase insulin responses, and also sheds light on why so many RHers eventually develop T2 diabetes.

Hi,

Thanks for the link will definitely check that out!!
How long did you have RH before you had T2 diabetes and why do you think you got diabetes too? Or is it as you said just a natural progression? What happens when you have both? Are you on medication? And how to you cope with it?

Sorry those are a lot of questions, but I would appreciate the info.
It's always good to have someone with personal experience but will check that website out too

Lisa

 

[Brunneria]

Hi,

Thanks for the link will definitely check that out!!
How long did you have RH before you had T2 diabetes and why do you think you got diabetes too? Or is it as you said just a natural progression? What happens when you have both? Are you on medication? And how to you cope with it?

Sorry those are a lot of questions, but I would appreciate the info.
It's always good to have someone with personal experience but will check that website out too

Lisa

no worries with the questions!

I have had RH since I was a child. 4? 5? years old.
Then I developed polycystic ovary syndrome in my teens and a benign pituitary gland tumour some time in my late teens. All those things affect blood glucose and insulin resistance. So probably not typical!

am on meds for the tumour (cabergoline) which can also have an effect on bg and insulin resistance.

I’ve low carbed most of my adult life, to control bg and hypos, but eventually in my mid 40s I started to get bgs into T2 diabetic levels. Went keto. No additional meds. Blood glucose returned to non diabetic levels and my RH is very well controlled on a keto diet, so I see no need for meds for it.

my experience was that the closer to T2 I got, the fewer hypos I got. Clearly because bg levels were rising. I thought the RH was getting better! Lol

as soon as I went lower carb, the high bgs reduced, and the hypos came back.

it took me dropping the carbs further - to down below my personal carb tolerance, which is keto - to get the RH back under control.

hope that helps

 

[Lamont D]

Hi,

I think you have got it in one we are "weird" or "rare" at the very least!!

Thanks for your very descriptive explanations, I do appreciate it!!

Been doing the keto thing for a couple of days now and I must say my blood sugar levels have never been so steady, it's amazing really it is!! Tried a carb supper last night cause I was feeling lazy. I am never doing that again I crashed hard 2 hours later and had to do a recovery. Did try and calm myself down and try your method of a biscuit and waiting 15mins instead of hitting the dextrose tabs, and it worked. Thanks for that!!

I have yet to do any exercise but I thought I'd take it easy and get used to the diet changes because I have anxiety issues. And unfortunately my RH activates that big time. Plus I need to tackle the extra weight I have put on over the last couple of months trying to change meds and control my RH, but I will get to that too. But over all I feel a lot more mentally stable now too because I'm a lot less worried about my health.

Oh yeah when you have a small carb meal what does that consist of?

Keep safe,

Lisa

It varies from a small plate of pre cooked fresh meat with a bit of salad or some carb free protein such as eggs, omelette but because I'm a bit picky, it's usually just meat.
I just wish I could just eat a piece of cheese, as that would be ideal.
I do eat a lot of salad, plus I have low carb curries and soups, I also have a stew without potatoes! I have always been conscious of portion size, so when I started, my meals were tea plate size,.
If you want low carb recipes, have a look in the low carb forum, there are some great ideas.

Keep safe