Reactive Hypoglycaemia

[Glycemic]

I have a question. I have ordered Berberine to see if it would help with my blood glucose and whether or not it would stabilise me for the day. Has anyone here tried it and has it worked?

 

[Lamont D]

I cannot tell you not to take because I have not heard of it before but there is a doubt because, just read it if you are thinking of having a child or if you take metformin or your BG levels are lowish as it takes effect.
It might help but it won't stop the reaction because the science of the outcomes is different. So if your meal is too high in carbs, the hypo will still happen.
if you do try it, let us know how you get on for future reference.

I have a question. I have ordered Berberine to see if it would help with my blood glucose and whether or not it would stabilise me for the day. Has anyone here tried it and has it worked?

 

[Effect_one]

If you wish to ask questions or are interested in asking anything pertaining to hypoglycaemia, diabetic or non diabetic. Ask here.

Hello, I am a little bit lost. I don't know if this is related to my reactive hypo. In the morning I am all itchy , everything around my neck feels too tight and it's like my skin is burning.

 

[Lamont D]

Hello, I am a little bit lost. I don't know if this is related to my reactive hypo. In the morning I am all itchy , everything around my neck feels too tight and it's like my skin is burning.

Hi and welcome back to our forum.
How are you coping?
I suffer the burning itching and itchy or itchiness when tired or late at night.
Enough that if it's bad, I take an antihistamine, to calm it. Be aware of the drowsiness with most of them, but it does help me fall asleep.
My neck issue is arthritis (spondylitis) and I'm not certain to do with my RH.
But as always in the sticky thread, where there is a list of symptoms. But not all, cos it is so individual.
If you have an endocrinologist or your GP might be able to help.
If you are still a bit lost, please keep asking, I will help if I can.
My best wishes.

 

[Oh766]

Make sure you record everything and take it to the doctors and try and convince him for a referral to a specialist in Hypoglycaemia!
You are now able to pick your consultant, wherever they practice! I have to travel 2 hours to see mine in Manchester.

Can I ask who your consultant is? I live up north and am yet to find one I feel listens to me!

 

[Lamont D]

Can I ask who your consultant is? I live up north and am yet to find one I feel listens to me!

@lovinglife, is it possible to pm @Oh766 please?
as I believe the poster needs a few more posts to be allowed to do so.
many thanks.

 

[lovinglife]

@lovinglife, is it possible to pm @Oh766 please?
as I believe the poster needs a few more posts to be allowed to do so.
many thanks.

I think you should be able to PM them, give it a try and if not please come back to me

 

[lovinglife]

@lovinglife, is it possible to pm @Oh766 please?
as I believe the poster needs a few more posts to be allowed to do so.
many thanks.

Did you manage to send the PM @Lamont D?

 

[Lamont D]

Did you manage to send the PM @Lamont D?

According to the pm!
Thanks., yes

 

[nomadinsing]

Hiya, just stumbled on this forum whilst searching my symptoms for months not having a clue what is up with me, a lot of my symptoms point to RH and I have noticed less and less episodes with a controlled diet however one day I am fine with a carrot and the next day not. I have a few questions if anyone could please try to answer them
1. How did you get a definitive diagnosis ?
2. (In the UK) would the endocrinologist give you a perscription for the test strips and/or a glucose monitor ? I’m finding it very expensive
3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?
7. One time I had a rapid drop from drinking Diet Coke, is that something that can happen?
8. Rice is my biggest trigger I’m finding I can’t even handle a spoonful, but pasta I am ok with, is it not always about the carb content?
9. I’ve read here that RH is usually when blood sugar goes high but I have never seen mine above a 7.3 after a meal, do people with RH usually have hypers? Because I am not technically getting hypers, just hypos from a normal blood glucose level.
10. I have recently had a blood test that showed a raised prolactin level (I’m not pregnant) and I was wondering if anyone has had this? Is raised prolactin a cause of RH or is RH the reason why it is raised? If anyone could shed some light I’d be greatful.

Sorry for the long post but I have been sick so long I’m trying everything to get some answers, I’ve had CT, MRI, Echo, ECG,EEG, chest xray, more bloods than you can imagine, at first they said it was anxiety, then it was vertigo, then ectopic beat panic attacks,then seizures, then silent migraines, took me about 8 months to figure it out on my own that it is usually food related and I am now trying to figure it all out.

Endocrinologist appointment in a few days although she didn’t believe me when I told her I think I have RH.

Trying to find the joy in life again. A bit scared to leave the house without a packet of skittles.

Thanks.
Sam.

Hello Everyone,

I'm new to this forum having recently been diagnosed with reactive hypoglycemia. I do not have diabetes. I'm in the process of adjusting my diet and finding it hard to get back to "normal".

I read your post Sam (SwishRadish) and many of the symptoms you mention I am also having. Especially these:

3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?

Were you able to stablise or even eliminate these symptoms with diet?

Thanks,
Scott.

 

[SwishRadish]

Hello Everyone,

I'm new to this forum having recently been diagnosed with reactive hypoglycemia. I do not have diabetes. I'm in the process of adjusting my diet and finding it hard to get back to "normal".

I read your post Sam (SwishRadish) and many of the symptoms you mention I am also having. Especially these:

3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?

Were you able to stablise or even eliminate these symptoms with diet?

Thanks,
Scott.

Hiya Scott,

I am happy to say that with proper management of my diet and exercise I was first able to stabilise and eventually fully eliminate the symptoms! It took me a lot of time and mistakes but I got there in the end.

The sudden drops I was having were before I made any changes to my diet and I was deffo eating carb sugar heavy.

sometimes my sugars would show normal with symptoms because I was also experiencing false hypos or delayed hypos. This is because my body was freaking out at the new changes and everything would set me off, sometimes emotional and stress factors too.

Unfortunately my eyesight never improved and I know the constant battle with hypos was the cause so I now have to wear glasses. That was the first warning I had when the hypos were about to hit. Along with lip tingling and sensory confusion.

Without changing my diet and exercising regularly these symptoms continued for over two years (I didn’t know it was RH for over a year!) and once I got myself into gear properly it took a 6 stone weight loss and a very strict eating routine to kick it. Unfortunately this is not the case for everyone but even if you make the changes and it reduces the number of episodes then that is a win!

Hope that helps.

 

[Lamont D]

Hi @nomadinsing and welcome to our forum.
I'm glad you found us.

Hello Everyone,

I'm new to this forum having recently been diagnosed with reactive hypoglycemia. I do not have diabetes. I'm in the process of adjusting my diet and finding it hard to get back to "normal".

I read your post Sam (SwishRadish) and many of the symptoms you mention I am also having. Especially these:

3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?

Were you able to stablise or even eliminate these symptoms with diet?

Thanks,
Scott.

Scott, if I may,
RH has many differing symptoms, more than you could be aware of.
We have probably had all these and more.
The blurry eyes is my first symptom of a spike happening and gets worse through the effect of the reaction.
If you read the sticky at the top of the thread page. There is a list of symptoms that we noted back then.
What do you mean normal? 3.5 to 6 mmols is normal.
It is the rapidly dropping blood glucose levels, that you get those symptoms of a sugar crash.
Symptoms persist throughout the spike and crash. And this can last as long as your BG levels are in rollercoaster ride, up and down from breakfast to bedtime.
And it is controlled by diet.
there has been a lot of those that have controlled their BG levels and myself included, had success with a very low or keto diet.

What tests have you had?
Do you have a glucometer or CGM, to monitor your BG levels?
do you have a specialist endocrinologist?
What dietary and treatment advice from your doctors have you had?
Has anyone explained why you have the symptoms?

I would advise reading some of the many threads about RH and dietary advice on the RH sub forum.
And ask questions, that is the reason for the forum.

I can understand the importance of understanding how you are feeling, not much support, the lack of information, I know, I went through all this when the condition was less known and most even on the internet, and what was on there was mostly rubbish.

Best wishes.

 

[nomadinsing]

Hiya Scott,

I am happy to say that with proper management of my diet and exercise I was first able to stabilise and eventually fully eliminate the symptoms! It took me a lot of time and mistakes but I got there in the end.

The sudden drops I was having were before I made any changes to my diet and I was deffo eating carb sugar heavy.

sometimes my sugars would show normal with symptoms because I was also experiencing false hypos or delayed hypos. This is because my body was freaking out at the new changes and everything would set me off, sometimes emotional and stress factors too.

Unfortunately my eyesight never improved and I know the constant battle with hypos was the cause so I now have to wear glasses. That was the first warning I had when the hypos were about to hit. Along with lip tingling and sensory confusion.

Without changing my diet and exercising regularly these symptoms continued for over two years (I didn’t know it was RH for over a year!) and once I got myself into gear properly it took a 6 stone weight loss and a very strict eating routine to kick it. Unfortunately this is not the case for everyone but even if you make the changes and it reduces the number of episodes then that is a win!

Hope that helps.

Hi SwishRadish,

Thanks for the fast reply and delighted to hear you've been able to stabilise and even eliminate the symptoms! That's super encouraging to hear. I'll reply to the message from Lamont and give some more details on my journey.

Cheers,
Scott.

 

[nomadinsing]

Hi @nomadinsing and welcome to our forum.
I'm glad you found us.

Scott, if I may,
RH has many differing symptoms, more than you could be aware of.
We have probably had all these and more.
The blurry eyes is my first symptom of a spike happening and gets worse through the effect of the reaction.
If you read the sticky at the top of the thread page. There is a list of symptoms that we noted back then.
What do you mean normal? 3.5 to 6 mmols is normal.
It is the rapidly dropping blood glucose levels, that you get those symptoms of a sugar crash.
Symptoms persist throughout the spike and crash. And this can last as long as your BG levels are in rollercoaster ride, up and down from breakfast to bedtime.
And it is controlled by diet.
there has been a lot of those that have controlled their BG levels and myself included, had success with a very low or keto diet.

What tests have you had?
Do you have a glucometer or CGM, to monitor your BG levels?
do you have a specialist endocrinologist?
What dietary and treatment advice from your doctors have you had?
Has anyone explained why you have the symptoms?

I would advise reading some of the many threads about RH and dietary advice on the RH sub forum.
And ask questions, that is the reason for the forum.

I can understand the importance of understanding how you are feeling, not much support, the lack of information, I know, I went through all this when the condition was less known and most even on the internet, and what was on there was mostly rubbish.

Best wishes.

HI Lamont,

Thanks for your reply and for all the messages you have posted here. I read a lot on this forum and found it super helpful, the only forum I've come across with such helpful info. If you know of any other sites worth visiting please do let me know.

My journey started 6 months ago when I was rushed to hospital because I thought I was having a stroke. After months of tests and continued "aftershocks" as I called them we finally got the RH diagnosis about a month ago. I did the 5 hour glucose test where they tested glucose and insulin levels and finally had a diagnosis. I am wearing a CGM and have completely flipped my diet to carb free almost keto. And the aftershocks have stopped. But I'm still finding the day to day to be a struggle. Rarely do I have a day when I feel 100% "normal" for the full day.

Some questions / comments from me:

1. My glucose levels are stable now. Always around 5 or 6. I never cross 7 and rarely drop below 4. Yet I still have symptoms almost every second day. I would describe the symptoms as feeling rocky, the sensation of being on a boat. And the feeling of dropping as SwishRadish described. If I'm sitting on the sofa I feel like I'm sinking into it, falling backwards.

2. My diet is very strict now but I wonder if it's too strict. I eat veggies and protein (chicken, fish, pork, eggs, yogurt) and that's about it. But I have to eat every 2 hours max, often every 90 minutes which makes me wonder if I am missing something in my diet.

3. I can't eat any carbs. If I try a small piece of wholegrain /wholewheat toast it sets me off. And even pumpkin or carrots are a no go let alone potatoes. It seems to be the same with fruit for me. I have tried berries with yogurt which seems to be recommended but I believe this also destabilases me. I've tried to reintroduce these foods slowly, but if I have one bad day it has a cascading impact for many days afterwards so I've stopped trying. Any tips on how to reintroduce foods like this slowly? Or I juts have to let them go?

4. Finally, I can't seem to get back to exercise yet. With the rocky symptoms above I even feel uncomfortable going for long walks. Or I simply do not have the energy for any exercise. Before my big episode 6 months ago I was in training to run a half-marathon, and now I can barely manage a long walk. Does the strength come back?

Thanks,
Scott.

 

[Lamont D]

HI Lamont,

Thanks for your reply and for all the messages you have posted here. I read a lot on this forum and found it super helpful, the only forum I've come across with such helpful info. If you know of any other sites worth visiting please do let me know.

My journey started 6 months ago when I was rushed to hospital because I thought I was having a stroke. After months of tests and continued "aftershocks" as I called them we finally got the RH diagnosis about a month ago. I did the 5 hour glucose test where they tested glucose and insulin levels and finally had a diagnosis. I am wearing a CGM and have completely flipped my diet to carb free almost keto. And the aftershocks have stopped. But I'm still finding the day to day to be a struggle. Rarely do I have a day when I feel 100% "normal" for the full day.

Some questions / comments from me:

1. My glucose levels are stable now. Always around 5 or 6. I never cross 7 and rarely drop below 4. Yet I still have symptoms almost every second day. I would describe the symptoms as feeling rocky, the sensation of being on a boat. And the feeling of dropping as SwishRadish described. If I'm sitting on the sofa I feel like I'm sinking into it, falling backwards.

2. My diet is very strict now but I wonder if it's too strict. I eat veggies and protein (chicken, fish, pork, eggs, yogurt) and that's about it. But I have to eat every 2 hours max, often every 90 minutes which makes me wonder if I am missing something in my diet.

3. I can't eat any carbs. If I try a small piece of wholegrain /wholewheat toast it sets me off. And even pumpkin or carrots are a no go let alone potatoes. It seems to be the same with fruit for me. I have tried berries with yogurt which seems to be recommended but I believe this also destabilases me. I've tried to reintroduce these foods slowly, but if I have one bad day it has a cascading impact for many days afterwards so I've stopped trying. Any tips on how to reintroduce foods like this slowly? Or I juts have to let them go?

4. Finally, I can't seem to get back to exercise yet. With the rocky symptoms above I even feel uncomfortable going for long walks. Or I simply do not have the energy for any exercise. Before my big episode 6 months ago I was in training to run a half-marathon, and now I can barely manage a long walk. Does the strength come back?

Thanks,
Scott.

Hi Scott,
yeah you are talking about me. When I was first diagnosed.
1.
unfortunately it does take some getting use to, and until you are fully keto and more importantly got your body adjusted to your new dietary regime. It will take time. It's because of the (science) the cells in your body, the insulin resistance, your first and second phase, hormonal imbalance, the gut biome, and the signal from your brain telling your bodily functions including your organs, etc. Until your brain recognises that your inner health is improving, it will insist that you need more glucose more insulin and more of everything else.
Complicated????
2. Mine is as well.
Why are you eating every couple of hours?
Was this advice from a specialist or dietician?
Crazy!
A little story of how I found out what I needed to do to control symptoms and BG levels.
As part of the series of tests, the last one was a 72 hour fasting test.
This was to eliminate other conditions and be a true diagnosis of RH.
So I stopped eating at 6pm on a Sunday night.
Went into hospital at 9am and stayed until the Thursday afternoon.
I never had a morsel and because I did not go hypo. It was confirmed RH.
My symptoms went after the second day (ish) But still not feeling as healthy as I remember.
The third day, I woke up and my brain fog cleared up, and my body felt fitter and healthier.
Nearly four days without food had sort of cleared the decks, for my body to start repairing itself.
I had already lowered my carb intake considerably, but this fasting was a light bulb moment.I
From before the test to a few weeks later, I lost six stone in weight.
I went through the BS of eating regular meals, it didn't work!
You eat too much, you spend too much, you shop too much, too much time obsessing over food. From dawn to midnight snacking. What do you eat? Wow!
I use intermittent fasting that suits me, I'm not hungry, I mean it, not hungry!!!
I cook everything fresh, a piece of gammon is roasting away in my oven..
Only eat fresh food, and on top of being carb intolerant, like you, I'm also lactose intolerant, and have been since young. So it's difficult without dairy, to get my good full fats, hence the meat fats I cook with
You have to be so careful of hidden sugars in food and the additives and ingredients.
Since finding all this out. The food industry is not healthy for us. Even vegan stuff. Low fat, the likes of oils such as palm oil, don't agree with you.
I have a small window from late afternoon and stop around 7pm (ish), which is four hours before I go to bed. Yeah, so I know I'm not going to go hypo. And the rest is food free.
There is a theory that eating too much protein is not good either. But it's better than carbs.
You must also on keto, have salt and a lot of water.
3.
Unfortunately, I don't even try. Having fallen off the wagon a couple of times, I know what it's like to get back on.
So it's a case of getting used to having the food you can have.
And tailored to your tastes and circumstances.
4 A ha! Exercise is complicated.
When a normal person exercises, his energy levels are topped up by drinking with juice etc. Hydration is the only drink that we can have. Also, your liver is culpable for providing extra glucose, when you need it. This is called glucogenisis. A liver dump. This could cause a spike. Which is not what we want. So, until we can have control over the exercise we can do, it's just like testing BG levels, you will only find out after doing it.
I have discovered for myself that walking is best for someone of my age. And because of the garden and chores, what I do is enough for me. Also if you walk for fifteen minutes, fifteen minutes after eating. Is really beneficial. Whereas strenuous exercises are only when full keto allows your energy levels are fat adapted. If you can, I can't!

Keep asking.
Keep testing.
Be patient, it is worth it.
Best wishes