Please can we have a forum section on reactive hypoglycaemia?

[Brunneria]

Hi,

@Giverny suggested I post this to remind her that I had asked the question
And it seems to be the ideal opportunity to explain why I'm making the request.

Reactive hypoglycaemia is not diabetes, but it lies on the same glucose intolerance spectrum.

Put simply, diabetics get raised blood glucose, while reactive hypoglycaemics (RHs) get lowered blood glucose - but they often go on to develop diabetes.

Because of this, we often (seems to be a couple of times a week) get people arriving at the forum saying things like 'my doc says I'm not diabetic, but I have all these hypo like symptoms, and I don't understand...?'

It just seems to make sense to have an RH section for these questions and answers.

I've recently read a book by Diane Cress called 'The Diabetic Miracle'. In it she filled in a piece of the RH jigsaw puzzle for me.
She's a dietician for diabetics, and a type 2 herself, and in her practice she has observed that many of her type 2 patients experienced the following pattern:
- normal appetite and weight
- food cravings (carbs) develop
- weight gain develops
- pre diabetes develops
- diabetes is diagnosed

And Cress talks about how she believes that RH is actually the earliest stage of the route for some type 2s. A kind of pre-pre-diabetes.

It occurs when a food is eaten that requires insulin to be produced.
A normal person produces exactly the correct amount of insulin for the meal and blood glucose quickly returns to a stable level.
RHs produce just a smidge too much insulin. As a result, the blood glucose drops a bit faster after the meal, and it also drops a bit lower.

The RH person ends up with lower blood glucose than before they ate (although, if left long enough e.g. overnight, the BG would return to normal).

So they get hungry, quicker.
So they start to crave foods that boost the blood glucose quicker.
So they eat more (carbs)
So they produce more insulin.
So their blood glucose drops again.
So they crave...

It becomes a never ending cycle with two results:
1. the patient often gains weight (we know that excess insulin causes weight gain)
2. The patient's insulin producing capacity is strained over time

This, Cress says, may lead to pre- and then full type 2 diabetes.

But it is important to note that not all RH sufferers develop pre diabetes, just as not all prediabetics develop diabetes...

Treatment may be drugs (@nosher8355 knows far more about that than me) and a diet that keeps BG levels from fluctuating too high or low.

So please can we have an RH section? Maybe in the 'Other health conditions' section?

 

[Lamont D]

I totally agree, this recently recognised condition in which blood glucose levels fluctuate to cause multiple symptoms and mimics T2. An increase in newbies posting the recognisable hypoglycaemic symptoms and we have no information other than mine or @Brunnerias experience.
Wikipedia has quite a lot of information, whereas the NHS information page has a paragraph and is not giving very much information.
Diet and control is crucial to treatment.
So the advice we give is mainly about how to control and what tests are important to the poster.
There is a difference between RH and diabetic hypoglycaemia. So if we are to have information about RH then there should be also one for diabetic hypoglycaemia.

 

[cold ethyl]

That's really interesting as your summary exactly mimics what I experienced. I was diagnosed with panic disorder about 10 years ago and fibromyalgia both of which have RH as a possible contributing factor. Must get a copy of the book.

 

[Brunneria]

That's really interesting as your summary exactly mimics what I experienced. I was diagnosed with panic disorder about 10 years ago and fibromyalgia both of which have RH as a possible contributing factor. Must get a copy of the book.

Well, I warn you that 90% of her book is about a diet for type 2s to re-train their pancreas to be more 'normal' . So the RH info is more of an aside. But I still found it filled a few of the many gaps I have in my understanding of RH

 

[cold ethyl]

I am now a tyoe 2 but I suspect the route taken is the one you describe. Funnily enough I had been rereading a book on anxiety that has a large chunk devoted to low blood sugars and hypoglaecemia and the dangers of developing diabetes in longer term.

 

[jack412]

I'd like a page on diabulimia and other eating disorders too.. as that is even more common than RH

I agree with the simple, too much insulin makes you overeat and that RH is too much insulin
I know you would know a lot on the subject but for joe blow, It may need more than someone's theory of RH, the explanation of pancreas releasing too much insulin, as you would know from reading, it is only one part. the mechanism of insulin level control is very complicated with opposing elements

RH mainstream mechanism theory needs to be put first, then other opinions how this occurs, for example Helicobacter gastritis can be one cause

apology for wiki but it gives a condensed overview
http://en.wikipedia.org/wiki/Reactive_hypoglycaemia

apology for wiki but it gives a condensed mechanism overview
http://en.wikipedia.org/wiki/Insulin

 

[Giverny]

I hear what you're saying. Just so I can get a better understanding, how common is RH? I ask this, as making a dedicated section for something on the forum is quite a major thing on various levels and I don't want to be adding sections that are going to have only a couple of threads over a long period of time.

For the reasons noted above, I'd like to hear everyone's feedback on an alternative: you've probably noticed that when you attempt to create a new thread in 'Ask a Question' section, you are offered a list of thread prefixes (if not, here's a picture of how that looks)

I'd be more than happy to add other options to this list including RH, eating disorders and more.

PS: Thanks for the suggestion! It's things like this that will help move the forum forward

 

[alliebee]

@Brunnaria. That's a fantastic idea. Its more common than people realise

 

[AndBreathe]

@Brunneria and @Giverny - These are my two posts from another thread, where I clearly had lost the ploy! @Brunneria , they're posts 217 and 221, for completeness.

Post 217:
Prefix? Who knew?

Is that field a search parameter @@Giverny ?

I'd agree in my time here, we have seen a number of people who show significant signs of reactive hypoglycaemia.

I'd speculate that when someone is new, they're unlikely to explore the prefix option. I've been here almost a year, and I had absolutely no idea it existed. Thinking back, I have seen it on threads, but very, very rarely.

Do others have a view on that?


Post 221:

I'm assuming you meant to post this on Brunneria's suggestion thread! I can make prefixes mandatory if you think they're not obvious enough

How did that happen (user error, of course, sorry! )?

To be honest, unless it was clear how to set it, it's potentially just another hurdle to creating a new thread, but maybe I'm being far too picky.

I'll copy this back onto @Brunneria's thread, for completeness, and if necessary, continue that part of the discussion there.

 

[Giverny]

@Brunneria and @Giverny - These are my two posts from another thread, where I clearly had lost the ploy! @Brunneria , they're posts 217 and 221, for completeness.

Post 217:
Prefix? Who knew?

Is that field a search parameter @@Giverny ?

I'd agree in my time here, we have seen a number of people who show significant signs of reactive hypoglycaemia.

I'd speculate that when someone is new, they're unlikely to explore the prefix option. I've been here almost a year, and I had absolutely no idea it existed. Thinking back, I have seen it on threads, but very, very rarely.

Do others have a view on that?


Post 221:


How did that happen (user error, of course, sorry! )?

To be honest, unless it was clear how to set it, it's potentially just another hurdle to creating a new thread, but maybe I'm being far too picky.

I'll copy this back onto @Brunneria's thread, for completeness, and if necessary, continue that part of the discussion there.

Right, I see what you're saying. I'll look into a way of making it more obvious. Maybe a visual prompt would be appropriate. I'll have a play around and see what looks right.

 

[anna29]

Cool idea and such a good positive way to support other members here .

 

[Brunneria]

I hear what you're saying. Just so I can get a better understanding, how common is RH? I ask this, as making a dedicated section for something on the forum is quite a major thing on various levels and I don't want to be adding sections that are going to have only a couple of threads over a long period of time.

For the reasons noted above, I'd like to hear everyone's feedback on an alternative: you've probably noticed that when you attempt to create a new thread in 'Ask a Question' section, you are offered a list of thread prefixes (if not, here's a picture of how that looks)

I'd be more than happy to add other options to this list including RH, eating disorders and more.

PS: Thanks for the suggestion! It's things like this that will help move the forum forward

Hi

I had no idea that prefix thingy even existed! I always open up the section of the forum I want and then start the thread. I thought that was how you HAD to do it.

I'm afraid that I really can't give a figure on nos of RHs.

I will have a Google and see if I can come up with some figures.
However, I predict it is very difficult to estimate for a number of reasons:
It may be that almost everyone who gets carb cravings has RH But how would you estimate those numbers? It would be a heck of a lot though.

Doctors can only diagnose it with prolonged fasting blood tests @nosher8355 's was 72 hours in a hospital, so that gets very expensive. Or by OGTT tests that run for much longer than the usual 2 hours (I think). So they only test if you nag and nag and nag. Like @nosher did. But very few people do that (I didn't). I just ran out of the capacity to fight.

Since it is rarely diagnosed, most doctors ignore it or deny it exists and prescribe antidepressants, anti anxiety meds and tell people to lose weight (my own experience is that in approx 40 years of RH, no doctor ever took any notice. It was only after I was tested for prediabetes (cos of medication and PCOS increasing the odds) that anyone recognised my BG levels might be out of wack.

Providing numbers may be impossible, but I will try...

In the meantime THANK YOU @Everyone in support of this idea. If we end up with a new section and it helps anyone at all, then it is well worth it.

(I am absolutely certain that I felt much worse as a RH suffer than I do as a type 2 sufferer, which may give an idea of how miserably grim it can be!)

 

[Brunneria]

Hi again @Giverny

You asked how widespread RH is.
So I just spent half an hour on google, and I am STUNNED by the result (even so quickly)

Short answer: RH is astonishingly widespread.

This study (from 2010)
http://www.ncbi.nlm.nih.gov/pubmed/20509823
Took 362 people 'without a diagnosis of abnormal glucose metabolism through an oral glucose tolerance test (OGTT)' and tested them.
12.4% had idiopathic reactive hypoglycaemia !!!
And curiously, that only 54% of them had a normal glucose tolerance (but that is a discussion for another thread)
The study then went on to see if switching to a high fibre diet helped.
It did.
They concluded that: A reactive glucose pattern following intake of a high glycaemic load is relatively prevalent and this phenomenon could be modulated by dietary fibre supplementation.

This study (2005)
found that idiopathic RH is prevalent in 50% of lean young women with PCOS.
http://www.ncbi.nlm.nih.gov/pubmed/15808380
That actually blows my mind.
50%!!!
And bearing in mind that PCOS tends to lead to weight gain, presumably over weight PCOSers have an even higher incidence of RH (that is just my speculation)
Plus the fact that women with PCOS are statistically much more likely to develop Type 2

This study (2008)
http://clinicaltrials.gov/show/NCT00802971
Shows RH to be astonishingly widespread:
'The prevalence of IRH is not fully known. A British trial among 1136 random chosen women aged 17-50, reported that 37.9% experienced symptomatic hypoglycemia four times every month (mean value). However, not all reported symptoms attributed to a low blood glucose (BG) correlates with measured low levels of BG and a "true" hypoglycaemic episode, i.e., as defined by American Diabetes Association (ADA) when plasma BG value is < 3,9 mmol/l with or without accompanying symptoms. This was underscored in three studies from England, Canada and Denmark, in whom all reported hypoglycaemic symptoms, but in whom accompanying plasma glucose values < 3,3 mmol/l during hypoglycaemic symptoms only occurred in 23, 47 and 0% of the study subjects, respectively. The majority of those with symptoms related to IRH hence are having these symptoms without being classified as hypoglycemic according to conventional interpretations. However, a new (2005) ADA definition; relative hypoglycemia, also comprise these symptomatic cases of hypoglycemia following a plasma glucose > 3,9 mmol/l.'

So, my reading of these studies suggests that RH may affect
12.4% of the population
At least 50% of women with PCOS
And 37.9% of women of reproductive age may experience symptoms 4x a month

Now, obviously, not everyone gets it badly enough to turn up on this website with symptoms... But it still suggests that a fair few people would benefit from there being some easily accessed threads here on the subject.

 

[Lamont D]

Sorry I've missed the thread continuance cos I've been working, (only possible because of the energy I now have) and the lack of symptoms. I came to this site because I couldn't get out of the rut of being diagnosed T2 and getting nowhere.
I hAve often thought of doing a blog on what stages my condition has taken, I am currently in a battle (which I won) with my own GP over strips and prescription charges, because I'm not diabetic yet!!! I could be taken off the register if my doctor wanted to!
I wouldn't have had the knowledge or the were withal to battle if it wasn't for @Brunneria and the very many of you guys on this forum.
I know this is about RH, but it as @jack says he would like a headline on another condition and I agree as often conditions are interlinked and common with diabetes. Such as thyroid problems etc.
I want to thank @Giverny for responding so positively about our request and the others who have shown an interest.
My consultant has only 3 others with RH in the Wirral area, he suspects many more but it is only being recognised by the new thinking with endocrinologists. Some still refuse it exists because of the symptoms or past history with particular anxiety and the low blood sugars. There are probably diabetic hypoglycaemics who have been wrongly diagnosed and are RH!
Sorry about the length of this post, but information is needed and I will gladly answer questions because that's what this forum is for!
I am very rare for my condition because I developed the condition naturally, usually RH is found after surgery or by trauma or as @Brunneria did as a prelude to Diabetes. I am neither!
Thanks again!

 

[Pdiabet]

Hi,

@Giverny suggested I post this to remind her that I had asked the question
And it seems to be the ideal opportunity to explain why I'm making the request.

Reactive hypoglycaemia is not diabetes, but it lies on the same glucose intolerance spectrum.

Put simply, diabetics get raised blood glucose, while reactive hypoglycaemics (RHs) get lowered blood glucose - but they often go on to develop diabetes.

Because of this, we often (seems to be a couple of times a week) get people arriving at the forum saying things like 'my doc says I'm not diabetic, but I have all these hypo like symptoms, and I don't understand...?'

It just seems to make sense to have an RH section for these questions and answers.

I've recently read a book by Diane Cress called 'The Diabetic Miracle'. In it she filled in a piece of the RH jigsaw puzzle for me.
She's a dietician for diabetics, and a type 2 herself, and in her practice she has observed that many of her type 2 patients experienced the following pattern:
- normal appetite and weight
- food cravings (carbs) develop
- weight gain develops
- pre diabetes develops
- diabetes is diagnosed

And Cress talks about how she believes that RH is actually the earliest stage of the route for some type 2s. A kind of pre-pre-diabetes.

It occurs when a food is eaten that requires insulin to be produced.
A normal person produces exactly the correct amount of insulin for the meal and blood glucose quickly returns to a stable level.
RHs produce just a smidge too much insulin. As a result, the blood glucose drops a bit faster after the meal, and it also drops a bit lower.

The RH person ends up with lower blood glucose than before they ate (although, if left long enough e.g. overnight, the BG would return to normal).

So they get hungry, quicker.
So they start to crave foods that boost the blood glucose quicker.
So they eat more (carbs)
So they produce more insulin.
So their blood glucose drops again.
So they crave...

It becomes a never ending cycle with two results:
1. the patient often gains weight (we know that excess insulin causes weight gain)
2. The patient's insulin producing capacity is strained over time

This, Cress says, may lead to pre- and then full type 2 diabetes.

But it is important to note that not all RH sufferers develop pre diabetes, just as not all prediabetics develop diabetes...

Treatment may be drugs (@nosher8355 knows far more about that than me) and a diet that keeps BG levels from fluctuating too high or low.

So please can we have an RH section? Maybe in the 'Other health conditions' section?

I had same problem
Whenever i m checking my bsl 2 hour ppbs is normal 134 but i had all above sympotoms
My 1 our ppbs is high ie 184 My gp says u r not diabetic
Feel hungry 2 hour after eating
Insulin is in the upper range
I had h pylori infection
Fingers crossed
Started lchf feeling better but heating hypos on lchf also
Advice pl

 

[Lamont D]

Hi again @Giverny

You asked how widespread RH is.
So I just spent half an hour on google, and I am STUNNED by the result (even so quickly)

Short answer: RH is astonishingly widespread.

This study (from 2010)
http://www.ncbi.nlm.nih.gov/pubmed/20509823
Took 362 people 'without a diagnosis of abnormal glucose metabolism through an oral glucose tolerance test (OGTT)' and tested them.
12.4% had idiopathic reactive hypoglycaemia !!!
And curiously, that only 54% of them had a normal glucose tolerance (but that is a discussion for another thread)
The study then went on to see if switching to a high fibre diet helped.
It did.
They concluded that: A reactive glucose pattern following intake of a high glycaemic load is relatively prevalent and this phenomenon could be modulated by dietary fibre supplementation.

This study (2005)
found that idiopathic RH is prevalent in 50% of lean young women with PCOS.
http://www.ncbi.nlm.nih.gov/pubmed/15808380
That actually blows my mind.
50%!!!
And bearing in mind that PCOS tends to lead to weight gain, presumably over weight PCOSers have an even higher incidence of RH (that is just my speculation)
Plus the fact that women with PCOS are statistically much more likely to develop Type 2

This study (2008)
http://clinicaltrials.gov/show/NCT00802971
Shows RH to be astonishingly widespread:
'The prevalence of IRH is not fully known. A British trial among 1136 random chosen women aged 17-50, reported that 37.9% experienced symptomatic hypoglycemia four times every month (mean value). However, not all reported symptoms attributed to a low blood glucose (BG) correlates with measured low levels of BG and a "true" hypoglycaemic episode, i.e., as defined by American Diabetes Association (ADA) when plasma BG value is < 3,9 mmol/l with or without accompanying symptoms. This was underscored in three studies from England, Canada and Denmark, in whom all reported hypoglycaemic symptoms, but in whom accompanying plasma glucose values < 3,3 mmol/l during hypoglycaemic symptoms only occurred in 23, 47 and 0% of the study subjects, respectively. The majority of those with symptoms related to IRH hence are having these symptoms without being classified as hypoglycemic according to conventional interpretations. However, a new (2005) ADA definition; relative hypoglycemia, also comprise these symptomatic cases of hypoglycemia following a plasma glucose > 3,9 mmol/l.'

So, my reading of these studies suggests that RH may affect
12.4% of the population
At least 50% of women with PCOS
And 37.9% of women of reproductive age may experience symptoms 4x a month

Now, obviously, not everyone gets it badly enough to turn up on this website with symptoms... But it still suggests that a fair few people would benefit from there being some easily accessed threads here on the subject.

Me again! I didn't want to confuse things by giving labels etc
As @Brunneria has posted that idiopathic RH is more common than she thought. However just to clarify, I have the Late RH which is rare especially naturally.

 

[Brunneria]

Thanks nosh!

Perhaps it would be best to have a section called 'hypoglycaemia'
And then stickies describing the different types. That would include the type 1 insulin variety (sorry, don't know if it has a proper name) and Nosher's late RH, and idiopathic RH... Plus others, if nec.

I'm thinking that would be really helpful to a lot of users on here.

What do the rest of you think?

 

[Brunneria]

I had same problem
Whenever i m checking my bsl 2 hour ppbs is normal 134 but i had all above sympotoms
My 1 our ppbs is high ie 184 My gp says u r not diabetic
Feel hungry 2 hour after eating
Insulin is in the upper range
I had h pylori infection
Fingers crossed
Started lchf feeling better but heating hypos on lchf also
Advice pl

Hi, and welcome!

The following is based on my experience:
In my opinion, you've done the best thing you could have done, by switching to low carb.
That's the biggest and quickest step you can take.

Next, I suggest you get yourself a blood glucose meter (lots of advice across the forum on this about choosing one, but a lot of us get the SD Codefree because it is cheapest.)
Once you have a meter, then you can start fine tuning your low carb diet to suit your body, by testing foods.

You can also map out your personal RH reaction, find out when your blood glucose is likely to drop, and have something to eat before it happens.
You may need to have a low carb snack every 2 or 3 or 4 hours, depending on how your body reacts.
But please resist the urge to snack on sugary, carby things - that always sent me into a self destructive seesaw of highs and lows. Stick to snacks of meat, cheese, eggs and nuts, until you have tested other snacks to see what effect they have.

Hope that helps!

And please, ask any questions you like!

 

[Lamont D]

Thanks nosh!

Perhaps it would be best to have a section called 'hypoglycaemia'
And then stickies describing the different types. That would include the type 1 insulin variety (sorry, don't know if it has a proper name) and Nosher's late RH, and idiopathic RH... Plus others, if nec.

I'm thinking that would be really helpful to a lot of users on here.

What do the rest of you think?

Yes I do believe you have the right title for the section on threads. As the specialists learn more about hypos and the different types of hypoglycaemia, there could be some sub groups that are different. That would please me.
I

 

[Pdiabet]

Hi, and welcome!

The following is based on my experience:
In my opinion, you've done the best thing you could have done, by switching to low carb.
That's the biggest and quickest step you can take.

Next, I suggest you get yourself a blood glucose meter (lots of advice across the forum on this about choosing one, but a lot of us get the SD Codefree because it is cheapest.)
Once you have a meter, then you can start fine tuning your low carb diet to suit your body, by testing foods.

You can also map out your personal RH reaction, find out when your blood glucose is likely to drop, and have something to eat before it happens.
You may need to have a low carb snack every 2 or 3 or 4 hours, depending on how your body reacts.
But please resist the urge to snack on sugary, carby things - that always sent me into a self destructive seesaw of highs and lows. Stick to snacks of meat, cheese, eggs and nuts, until you have tested other snacks to see what effect they have.

Hope that helps!

And please, ask any questions you like!

I have also started Potato starch supplemment from last 12 days
hope it will help