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Reactive Hypoglycaemia

I believe that most of those who have blood glucose disorders wether diagnosed or undiagnosed. Will struggle to get the help they need because GPs come across these conditions very rarely and wouldn't know what to do if they did. These kind of disorders are very difficult without hospital tests to diagnose. Many GPs wouldn't refer unless it was critical, then depending who your endocrinologist is, if he recognises the symptoms, would probably struggle with what is front of them and do the correct tests.
As you have probably read the thread and seen how many have asked questions, it is a hidden condition, unless you are lucky like me, to find an endocrinologist that recognised my symptoms for what they were and done the tests.
If you read many threads in the forum, I know that there are as many RH sufferers out there but can't get the help they need.
@Brunneria has never been diagnosed properly, except for her T2. But she knows and recognises every little thing about it and treats herself as such.

I also believe that hypothyroidism hides RH as well!
 
agreed @nosher8355

and - to be fair to doctors - every single symptom that you get with RH looks like something else:
blood pressure
depression
agraphobia
menopause
hormonal stuff
all sorts of emotional issues
physical aches and pains

and most docs only know how to check for T1 or T2. If the fasting blood and HbA1c are normal, then they don't know to look any further.

I really wonder how many people diagnosed with stuff like fibromyalgia, depression, ME, etc, have elements of RH that go unrecognised.

As far as I know, there is only one sure fire way to check for it (without a 72 hr hospital oral glucose tolerance test, and assorted other tests) is to go very low carb and see if the symptoms disappear. And how many people are willing and able to do that? I mean, they haven't even heard of low carbing, most of the time!

and
Don't worry, @Kaz261 didn't feel you were prying at all - have typed out my story often enough on these boards that I think it must bore people when I trot it out yet again. lol. no embarrassment at all! But I think it is useful to talk about how we each got here - because everyone gets here by a different route.
 
Brunneria said:
agreed @nosher8355

and - to be fair to doctors - every single symptom that you get with RH looks like something else:
blood pressure
depression
agraphobia
menopause
hormonal stuff
all sorts of emotional issues
physical aches and pains

and most docs only know how to check for T1 or T2. If the fasting blood and HbA1c are normal, then they don't know to look any further.

I really wonder how many people diagnosed with stuff like fibromyalgia, depression, ME, etc, have elements of RH that go unrecognised.

As far as I know, there is only one sure fire way to check for it (without a 72 hr hospital oral glucose tolerance test, and assorted other tests) is to go very low carb and see if the symptoms disappear. And how many people are willing and able to do that? I mean, they haven't even heard of low carbing, most of the time!

and
Don't worry, @Kaz261 didn't feel you were prying at all - have typed out my story often enough on these boards that I think it must bore people when I trot it out yet again. lol. no embarrassment at all! But I think it is useful to talk about how we each got here - because everyone gets here by a different route.
Click to expand...

I think back and @Brunneria did a check around and found the stats about how many RH ers could be out there. I think it some figure that was quite high for females and really rare for males.
RH is usually part of another condition especially with female hormones and periods (yuk!) As well as other things that females have that us males don't. There is a high preponderance in pregnancy.

I hate talking about women's problems as they were once called!
 
Brunneria said:
agreed @nosher8355

and - to be fair to doctors - every single symptom that you get with RH looks like something else:
blood pressure
depression
agraphobia
menopause
hormonal stuff
all sorts of emotional issues
physical aches and pains

and most docs only know how to check for T1 or T2. If the fasting blood and HbA1c are normal, then they don't know to look any further.

I really wonder how many people diagnosed with stuff like fibromyalgia, depression, ME, etc, have elements of RH that go unrecognised.

As far as I know, there is only one sure fire way to check for it (without a 72 hr hospital oral glucose tolerance test, and assorted other tests) is to go very low carb and see if the symptoms disappear. And how many people are willing and able to do that? I mean, they haven't even heard of low carbing, most of the time!

and
Don't worry, @Kaz261 didn't feel you were prying at all - have typed out my story often enough on these boards that I think it must bore people when I trot it out yet again. lol. no embarrassment at all! But I think it is useful to talk about how we each got here - because everyone gets here by a different route.
Click to expand...
Funnily enough, I was diagnosed with ME In my 20's. Looking back, it could have been RH. Also, over the years I've had several instances where I've felt suddenly faint. A couple of times I was driving and had to pull over very quickly.

I'm being tested for possible early menopause (sorry Nosher!) and Vit d next week.

My doctor (who knows nothing about RH) still thinks ALL of my symptoms are caused by anxiety, which is quite frustrating. Although reading your story, I shouldn't be at all surprised or disheartened by this!
 
Kaz261 said:
Funnily enough, I was diagnosed with ME In my 20's. Looking back, it could have been RH. Also, over the years I've had several instances where I've felt suddenly faint. A couple of times I was driving and had to pull over very quickly.

I'm being tested for possible early menopause (sorry Nosher!) and Vit d next week.

My doctor (who knows nothing about RH) still thinks ALL of my symptoms are caused by anxiety, which is quite frustrating. Although reading your story, I shouldn't be at all surprised or disheartened by this!
Click to expand...

Anxiety is a symptom of RH!
RH is not a symptom of anxiety!
RH cannot be caused by anxiety, though it doesn't help!
 
nosher8355 said:
Anxiety is a symptom of RH!
RH is not a symptom of anxiety!
RH cannot be caused by anxiety, though it doesn't help!
Click to expand...
Exactly what I've tried to explain to him Nosher, but he doesn't get it. Sometimes I think I really am going mad! I've given up now. With the help from you guys and also knowing I'm not alone with my symptoms, it doesn't matter so much that he doesn't understand it.

I've got what will probably be my last appointment with my Endocrinologist next week. Are regular, follow up tests recommended by your Doc? Not sure if I should be asking for an annual review type of thing. Especially since my doc doesn't understand the condition.
 
Kaz261 said:
Funnily enough, I was diagnosed with ME In my 20's. Looking back, it could have been RH. Also, over the years I've had several instances where I've felt suddenly faint. A couple of times I was driving and had to pull over very quickly.

I'm being tested for possible early menopause (sorry Nosher!) and Vit d next week.

My doctor (who knows nothing about RH) still thinks ALL of my symptoms are caused by anxiety, which is quite frustrating. Although reading your story, I shouldn't be at all surprised or disheartened by this!
Click to expand...
They all have such similar symptoms especially when you try to describe how you are feeling. My gp thought it was a panic attack. I changed gps. Anxiety can sound similar when you're describing it and the fast plummeting of blood sugar feels like it and sometimes it is anxiety. I would get anxiety visiting my gp as I'd get 5 minutes to try explain again and know I'd get kicked out. Of course that was usually in the morning after breakfast and a walk so I must have been dropping sugar levels at the time of the visit.
 
I get the regular diabetic check ups and I now can't stop laughing as my diabetic nurse doesn't get how I get my good results.
I get eye tests as well!
I also get six month reviews with my endocrinologist.
 
nosher8355 said:
I believe that most of those who have blood glucose disorders wether diagnosed or undiagnosed. Will struggle to get the help they need because GPs come across these conditions very rarely and wouldn't know what to do if they did. These kind of disorders are very difficult without hospital tests to diagnose. Many GPs wouldn't refer unless it was critical, then depending who your endocrinologist is, if he recognises the symptoms, would probably struggle with what is front of them and do the correct tests.
As you have probably read the thread and seen how many have asked questions, it is a hidden condition, unless you are lucky like me, to find an endocrinologist that recognised my symptoms for what they were and done the tests.
If you read many threads in the forum, I know that there are as many RH sufferers out there but can't get the help they need.
@Brunneria has never been diagnosed properly, except for her T2. But she knows and recognises every little thing about it and treats herself as such.

I also believe that hypothyroidism hides RH as well!
Click to expand...
Yes I totally agree. I am new on here and have self diagnosed myself with this (I had been told that I was just borderline diabetic), and we did a 6 hour GTT test at home on my husband and I have realised more than him that he has "Flat curve Response Reactive Hypoglycemia". It is books from America that I have read that have helped us until now. Thanks to this forum site - I shall now be adopting the Ketogenic Diet, cus I recognise a lot of sense in that. The American books said a similar diet bar they said to have wholegrains which I find make myself and my husband worse. - But the Krimmel book "The low blood sugar handbook" did explain that some with RH can't even tolerate these.
I strongly recommend this book cus there is a lot of scientific explanations in it and also how to self test with a 2 week diet, if we can't get the support of a GP.
I still desperately want to get professional support for my husband though in UK, as this will help our 1 daughter and 3 sons to go on the diet sooner. If they knew they had a problem and caught it early it would save a lot of the hells of the mental health issues this causes. So I am getting rather angry that more people are not getting diagnosed sooner. 1 of my sons has schizophrenia and those American books on RH explain that RH can cause schizophrenia. if I had been aware of RH sooner - I would have fed all my children on the correct food sooner. I only discovered it by accident in 2010 when I picked up a library book on it were I worked.
I am also begging to wonder if there is more money to be made on Antidepressants in the drug industry. And since my son has nearly died with this problem - I am getting very frustrated and angry with the misunderstandings and the misdiagnoses of Reactive Hypoglycemia. I was diagnosed as borderline diabetic in 1986. I was put on a bad diet for it back then and told to have digestive biscuits. And just to cut back on sugar. In 2010 after reading the books from America on RH I tried their diet instead which was NO sugar and to read all labels to be sure to completely cut it out. Also they say no Artificial, NO caffeine, No Alcohol, No Tobacco, And the last one they said was No refined flours or grains. The latter one they did say that there are some with RH that can't tolerate any grains or flours at all. On this diet I became less tired and got rid of migraines that I was getting a lot of prior to 2010.
This web site is very good, but the problem is - it is in America which doesn't help us in the UK very much. www.hypoglycemia.org
We live in Preston Lancashire. If anyone knows any good GPs who do understand RH that would be great.

Thank you sooo much for your kind replies.
 
misdiagnosed said:
Yes I totally agree. I am new on here and have self diagnosed myself with this (I had been told that I was just borderline diabetic), and we did a 6 hour GTT test at home on my husband and I have realised more than him that he has "Flat curve Response Reactive Hypoglycemia". It is books from America that I have read that have helped us until now. Thanks to this forum site - I shall now be adopting the Ketogenic Diet, cus I recognise a lot of sense in that. The American books said a similar diet bar they said to have wholegrains which I find make myself and my husband worse. - But the Krimmel book "The low blood sugar handbook" did explain that some with RH can't even tolerate these.
I strongly recommend this book cus there is a lot of scientific explanations in it and also how to self test with a 2 week diet, if we can't get the support of a GP.
I still desperately want to get professional support for my husband though in UK, as this will help our 1 daughter and 3 sons to go on the diet sooner. If they knew they had a problem and caught it early it would save a lot of the hells of the mental health issues this causes. So I am getting rather angry that more people are not getting diagnosed sooner. 1 of my sons has schizophrenia and those American books on RH explain that RH can cause schizophrenia. if I had been aware of RH sooner - I would have fed all my children on the correct food sooner. I only discovered it by accident in 2010 when I picked up a library book on it were I worked.
I am also begging to wonder if there is more money to be made on Antidepressants in the drug industry. And since my son has nearly died with this problem - I am getting very frustrated and angry with the misunderstandings and the misdiagnoses of Reactive Hypoglycemia. I was diagnosed as borderline diabetic in 1986. I was put on a bad diet for it back then and told to have digestive biscuits. And just to cut back on sugar. In 2010 after reading the books from America on RH I tried their diet instead which was NO sugar and to read all labels to be sure to completely cut it out. Also they say no Artificial, NO caffeine, No Alcohol, No Tobacco, And the last one they said was No refined flours or grains. The latter one they did say that there are some with RH that can't tolerate any grains or flours at all. On this diet I became less tired and got rid of migraines that I was getting a lot of prior to 2010.
This web site is very good, but the problem is - it is in America which doesn't help us in the UK very much. www.hypoglycemia.org
We live in Preston Lancashire. If anyone knows any good GPs who do understand RH that would be great.

Thank you sooo much for your kind replies.
Click to expand...

What you have to realise it is the carbs, all carbs that trigger the 'reactive' part of the condition.
It is like your body is allergic to them.

What happens in a glucose test, the drink turns into your blood stream and used so quickly that the insulin is still being produced by the stimulation of your hormones to keep going after the glucose has gone, so the excess produces the hypo, because insulin production lowers your blood glucose levels. Giving you a hypo from a hyper!

So if you stop the trigger (carbs and sugars) you don't have the hypos!

Also the excess insulin turns to visceral fat around your endocrine organs and system.
 
Hi I am new here although I have had Reactive Hypoglycaemia for about 4 years now. I have type 2 diabetes but then developed adrenal failure which means that my body cannot respond to the low blood sugars that I get from the RH and so I have frequent hypo's especially when doing any form of exercise. I came out of the supermarket last week and got in my car to drive and did my blood sugar as it has to be above 5 before I can drive and it was 3.3. I no longer know when I am hypo until my brain disengages, I get confused, and can not speak. I had a particularly bad hypo today while swimming which is why I have come to this discussion. I just wondered if anyone had tried any type of hypo alarm that works in the day time? Thanks
 
Hi and welcome @arniemouse !

I am sorry to hear about your hypos. I find that hypos knock me for 6 too. Always feel as if I have been run over by a bus. And they definitely affect my brain and emotions for some hours after.

Are you OK now?

I'm afraid I don't know anything about hypo alarms. You might find more info on them on the Type 1 section of the forum, but please stay right here to discuss anything about RH! :)
 
Thank you I find I can try to ignore the problems until I hit one like today and then its just horrible. Takes me 2-4 hours to recover from the hypo so ok now thankfully. Have a great consultant who is just so understanding but he admits its very hard to treat. Have been reading previous threads so you have no carbs at all in diet? Does that include fruit and the like?
 
arniemouse said:
Thank you I find I can try to ignore the problems until I hit one like today and then its just horrible. Takes me 2-4 hours to recover from the hypo so ok now thankfully. Have a great consultant who is just so understanding but he admits its very hard to treat. Have been reading previous threads so you have no carbs at all in diet? Does that include fruit and the like?
Click to expand...

I tend to eat less than 50g carbs a day. In practical terms, during the last few days, that means I have coffeencream for breakfast, a lunch of home made crustless quiche containing ham, eggs, cream and some veg or hummus (by the spoon), or tomato and mozarella, or cold meat and salad. Snacks are a couple of squares of dark choc, and evening meal is meat, masses of non-starchy veg, and sometimes berries and cream.

So my 50g carbs adds up to lots of veg, a little fruit, and no bread, potato, rice or pasta. I would be lying if I pretended I never ate them, but it is occasionally, and in very small portions. :)
 
arniemouse said:
Thank you I find I can try to ignore the problems until I hit one like today and then its just horrible. Takes me 2-4 hours to recover from the hypo so ok now thankfully. Have a great consultant who is just so understanding but he admits its very hard to treat. Have been reading previous threads so you have no carbs at all in diet? Does that include fruit and the like?
Click to expand...

Hi @arniemouse, welcome to the forum.

I have RH, but non diabetic, and I haven't had a hypo for well over a year and the reason is, I don't do carbs or as little as possible because it's the carbs (not forgetting the sugars!) Which make me ill. Despite my consultant endocrinologist always asking me to increase my carbs, I have a little but I still don't eat many. All the scare stories about having a certain amount of em, makes no sense to me, as it is a no brainer, that you are literally eating something that makes you feel ****! And when you don't, you feel fine, more energy and fitter and healthier than I have for decades.
As Brun is the T2 version of our unique condition, she will give you better advice on how to control the condition.
I've no doubt, that you have loads of questions, ask them, the only stupid ones are the ones not asked.
Also look at the low carb forum, it has some great ideas and recipes, that we RH ers can and do eat.
 
arniemouse said:
Thank you I find I can try to ignore the problems until I hit one like today and then its just horrible. Takes me 2-4 hours to recover from the hypo so ok now thankfully. Have a great consultant who is just so understanding but he admits its very hard to treat. Have been reading previous threads so you have no carbs at all in diet? Does that include fruit and the like?
Click to expand...

How do you treat your hypos?
 
nosher8355 said:
How do you treat your hypos?
Click to expand...
Hi Nosher
I am so pleased to find this thread here its a very lonely illness as its so rare. I have just been reading through the past posts and it has been very enlightening. All this eat lots of long acting carbs stuff has always been the advice I was given, Although I do try to keep as low carb as possible - but was told off by the dietician in November and she wanted me to take full sugar coke before any exercise and get my bs to 8!! Well I did try and you can imagine the reaction to that.
Exercise is one of my biggest problems (I swim every day) so I eat bananas to get me through but now wondering if that's a good idea. Also do like to snack on grapes during day and milky coffee.
My other problem is driving I have to have a bs of 5 before I can drive and have to stop and test every half an hour. Because my hypos are usually with exercise I have not had to tell the DVLA as yet but I am worried that my consultant may change his mind as when they hit I have no warning one second ok and literally the next I am confused and unable to speak. So I fall into 'needing assistance category'. I am going to email him and see what he thinks about latest exploits!!
I will try to have a low carb breakfast like an omlette at the weekend and see what the bs do with that. Otherwise eat homemade soups and meat and veg with no pots, pasta etc. Mornings are a big issue as I have no adrenal function so no back up to push the bs up.
My indulgence with a hypo is chocolate. It brings my bs up slowly have tried more sugary stuff but that just makes it drop again.
 
I feel like I am in a catch 22 situation. I have to eat some carbs to get my bs high enough to drive and then to swim but then I risk hypos like today. Its a bit scary because I can't always correct them and the bs just keeps going down. I have hypos at night which was shown by a continuous blood glucose monitor I had for a week but I try not to think about that too much!! I also have done the 72 hour fast which was not a great experience!
Any suggestions as to how I might be able to continue to swim and walk dog without the hypos would be great please
 
arniemouse said:
Hi Nosher
I am so pleased to find this thread here its a very lonely illness as its so rare. I have just been reading through the past posts and it has been very enlightening. All this eat lots of long acting carbs stuff has always been the advice I was given, Although I do try to keep as low carb as possible - but was told off by the dietician in November and she wanted me to take full sugar coke before any exercise and get my bs to 8!! Well I did try and you can imagine the reaction to that.
Exercise is one of my biggest problems (I swim every day) so I eat bananas to get me through but now wondering if that's a good idea. Also do like to snack on grapes during day and milky coffee.
My other problem is driving I have to have a bs of 5 before I can drive and have to stop and test every half an hour. Because my hypos are usually with exercise I have not had to tell the DVLA as yet but I am worried that my consultant may change his mind as when they hit I have no warning one second ok and literally the next I am confused and unable to speak. So I fall into 'needing assistance category'. I am going to email him and see what he thinks about latest exploits!!
I will try to have a low carb breakfast like an omlette at the weekend and see what the bs do with that. Otherwise eat homemade soups and meat and veg with no pots, pasta etc. Mornings are a big issue as I have no adrenal function so no back up to push the bs up.
My indulgence with a hypo is chocolate. It brings my bs up slowly have tried more sugary stuff but that just makes it drop again.
Click to expand...

I can really sympathise and empathise your dilemma, who do I believe?
The doctors or somebody off an internet site who has the condition and successfully controlled the condition?
My numerous GPs didn't have a clue and my endocrinologist suggested I was lucky to be seen by him. As other endos, wouldn't recognise it either.
As for dieticians, my endocrinologist, told me to ignore her low GI spiel!
A carb is a carb and affects your blood levels.
If very low carbing, as me and @Brunneria do, which does work, keeps the symptoms and hypers, hypos and all the symptoms that you prescribe, in other words, in control, you have no need to hypo any more, unless your other condition, which I don't have a lot of knowledge.
Therefore your driving won't be affected.
I eat little and often and my bloods don't go out of normal range. So I don't spike, so I don't hypo. Every test I have and there has been many, I always hyper and hypo to any glycaemic load. That's now within four to five hours now, but I still drop. So I eat regularly every three hours. That is just a failsafe and it keeps me well.

Keep asking and learning, there is an awful lot of to weigh up.
 
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