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Reactive Hypoglycaemia

The reason we have this part of the forum is to get those that may have this condition realise that they are not the only ones and have somewhere to go to get answers.
I had really no one to turn to except this forum and a poster who has had RH most of her life. She gave me my confidence to tackle this condition and get control.
It is a condition that is relatively rare and the battle will go on, as there is no cure, but there are things that will help you. Diet, exercise, control and a realisation of what you have is the answer to being fitter and healthier.
 
Hi I'm no expert but I've always known from being born., I'm now 52.. That anything with sugar in it, fruit, pop, sauces, cakes biscuits, chocolate etc has always made me ill.. I have been tested all my life for diabetes as my mum is a diabetic. Tests always came back negative. I saw a new specialist last October and he did a different test and diagnosed me with reactive hypoglycemia.. I make to much insulin so when I eat carbs I produce more insulin which then makes my blood sugars dip very low to 2-3 and this is why I get a lot of hypos.. Does this make any sense as I'm still learning about this condition
 

Hi hozzy, welcome to the club!

Yes that's me, from hypo hell!

I also flush insulin to carbs and sugars.

Have you read this thread, and if you look through you will find links from @Brunneria that will make you say 'aha, yes that's me'!

Also read my first blog titled ' a reactionary'.

Hope you are ok.

How are you coping with the condition, and do you understand the science?

Did the consultant say which RH you have?

Has he suggested meds? Or diet?

Sorry for the questions, I will try to help if I can

Nosher
 
Hi @hozzy126

Glad you found us! How's it going?

There are a surprising number of us here with various variations on RH. Welcome to the club!

And please, if we can help/advise/explain anything at all, just ask!
 
Hi haven't been on this in ages. I was referred to endocrinology and had the normal fasting bloods taken and a synacthen test to rule out hormone imbalance or addy sons disease. Waiting to go in for a 72 hr fast to see if it's insulinoma- reactive hypoglycemia hasn't been mentioned. I was told it was either just me il have to learn to live with it, addinsons disease or a hormonal imbalance or insulinoma. Can anybody advise what to expect in the 72 hr fast?? (Bar being the grumpiest person ever!)
 
I'll put out a tag for @nosher8355
- he's a veteran of these. Poor lad.

Good to see you again! And I'm glad they are investigating!
Hasn't it occurred to them that hormones affect BG?
They do for me...
 
I dunno just got a letter to say they couldn't do anything more synacthen test and hormones came back normal and referred for 72hr fast for further investigation. Not looking forward to it to be honest and after googleing insulinoma have had myself very worried (dr goggle is not the best idea) they did explain might need part of pancreas removed if it is insulinoma. Just anxious about the 72hr fast now and wondering what it entails exactly thanks @Brunneria
 
I think nosher will put your mind at rest. I think it will be more boring than anything else... And they will test your BG regularly, so you will be in safe hands.

 
Your first 12 hours will be overnight at home, you will probably be asked to come to hospital about 8am.
You will probably spend the next hour getting a bed. Hope you have better inmates than me!
Your blood glucose levels will be taken every few hours just to see if your going hypo, hyper or like me normal levels.
We had no Tele, I took my kindle and read, read and read.
Went for walks around the hospital and my curiosity got the better of me.
That's it for most of it. You do get woke up during the night to take bloods.
You can sip water or suck on ice cubes. After the first day, the fasting didn't bother me. I always disappeared during meal times and I lounged around in the nurses off duty room. Found a shower that was brilliant.
Your specialist will turn up to see how you are doing every now and then.
If you don't go hypo, you will finish the test after the 72 hours.
If you go hypo it definitely won't be RH!
It will either be pancreatitis or as you suggest a hormone imbalance.

It is boring and you need your nearest and dearest to visit and support you.
Hope you get good staff and don't notice the diabetic diet that they give out.

Afterwards treat yourself to a full English breakfast like I did, low carb and it tastes great.

I realised then, that fasting can be used by me, to get my bloods normal if they were high(ish)
Have used it a few times and it's done me no harm. My bloods all the way through the fast never went above 5.0mmols.

Hope that helps.
Good luck with your test.
Gonna look up insulonoma!
 
Yes I was right. If you hypo, there is something like insulanoma wrong with your pancreas.
It was curious reading the symptoms and the relevance to yours. Not saying that you have of course, just so many symptoms that are the same as diabetes or Hypoglycaemia.
No wonder some doctors don't have a clue!

Let us know how you are doing. Would be interesting to do a running commentary on it, if you have the technology. On my last OGTT I took my kindle fire and wrote a blog.
 
Thanks @Brunneria and @nosher8355 appreciate your info! Yes will do will keep you's up to date. No date for it yet will hopefully know more soon and il let you's know!
 
Hi I've just been back for my second appointment with a different diabetic specialist at the hospital as the one I saw last time who actually diagnosed me with RH left.. I have been told since I have been managing RH so well all my life there is nothing else they can do apart from prescribe glucobay Acarbose tablets one to be taken three times a day but have been told they can cause really bad stomach ache and flatulence.. Great that's all I need.. I haven't taken them yet.. Has anyone any comments as they have said that's it basically.. The specialist said I would be better being a diabetic as it would be easier to manage!! He didn't seem to know anything about RH should I be worried?
 

How frustrating!

But honestly?
Yes, I think if you can manage RH with diet, then that is the best possible outcome.
And I have to agree that having experienced RH and then type2, I would rather be type2.
But then, I can be free of both RH and symptom free of type 2, provided I keep the carbs low enough.

I'm never in favour of medication if it can be avoided.

Although I would feel happier if they were monitoring you. Are they? Or are they planning to just dump you back on your GP and pretend you don't exist?

Could you find out where the good guy went, and ask to be referred there?

Regarding diet and self management, I can only say what works for me - very low carb.
I had a brush with RH only this week. Upped my carbs for no good reason. Then hypoed. Very silly. Took about 36 hrs to get back onto an even keel. I really should know better!

I'm sorry the appointments have been unsatisfactory, but you do have a diagnosis, and that is a very precious thing - and may prove VERY useful, in years to come.
 


Hi thanks for your prompt reply.. Luckily I'm a very strong person and luckily been very good with my diet.. I'm usually called fussy but I have always been strict as I know how ill I can feel even as a child. So I've looked after myself knowing sugars, fruit, cake, chocolate etc are my enemy.. But like you said at least I have a diagnosis and I know and my mum knows that we were right.. And yes I will be dumped back at my GP who doesn't really know anything.. I seem to be the expert as I have managed it all my life even though I didn't know what it was.. I would have thought they would be monitoring me especially as they monitor diabetics as my mum is. I will have to wait and see but I doubt it.. I've even thought about a blood sugar monitor but I don't know if this will make any difference to monitoring RH as I know when I'm low due to the way I feel.
 
That's shocking!

I had a huge battle to get diagnosed, don't give up!

I have already posted about 'specialists' not knowing about RH.
I have had to go with my Consultant to a new hospital.I have to travel, could your GP find out where he/she is and refer you.
thats what i had to do!
I really wouldn't by choice take the meds. I don't believe they wll do you any good, i have read about them and i wouldn't be happy taking them in my honest opinion.
As Brunneria says keep to low carb and eat regularily so you don't go in the cycle of ups and downs (hypers and hypos)

I couldnt do without my monitor as even experimenting you find things that you know should be bad and yet your blood glucose levels tell you otherwise. I would definitely see your GP about one or invest in one, it is a really good ally in the fight against carbs.
 
nosher8355 said:
If you wish to ask questions or are interested in asking anything pertaining to hypoglycaemia, diabetic or non diabetic. Ask here.
Click to expand...
Hi. I have reactive hypoglycaemia (post prandial hypoglycaemia ) I would like to speak with others who have the same condition. Are you here?
 
Yes, just on now!
I have been diagnosed Late post prandial Reactive Hypoglycaemia.
Are you diet only for you condition?
What is your recommended diet?
Have you had a lot of tests?

If you have any questions or just talk, that's ok! One of us will answer.
 
Hi, I was diagnosed with RH a year ot two ago, I've posted on here before mainly a tonn of questions. My diabetic doctor I see has said from the beginning she wasnt convinced it was RH but was prepared to accept it for the time being.all the tests I had done pointed to RH except I have had low bg without food on several occasions never caught by nurses, anyway she sent me to see a dietician and then for aprolonged glucose test lasting about 5 hrs. This was abandoned halfway through due to low blood sugar, yet again I seem to stuck with what it is. I have altered my diethowever I'm underweight anyway, I was put on arcabose but my gp took me off it as the stomach cramps got so bad I could barely walk and the low bg's seem to of got worse at times I have had 8 in one day, an average day is about 4 whilst sticking to the the deit prescribed. With the new test abandoned is that ehat you'd except to happen with RH in this kind if test?
 
Hi @Nicola_F

Welcome (back!).

Most doctors and even Specialists havent got a clue about RH.
There are so few of us about.
Have you read the thread, (its getting longer!!!)
If you use the search button you'll find more.
I also have a blog about my journey. its called 'A Reactionary'
It took me a long time and a great consultant to recognise the symptoms, (there are so many) that until you read about them and put them together, you realise its you!

The prolonged glucose test is always abandoned as soon as you hypo. thats standard practice. because once you go low thats the 'Reaction' part of the condition.

Are you very low carbing? If so you will probably need to eat little and often every three hours is the max time to go without some food.
You say you need not take weight off, I recommend more protein and more full fat into your diet. Like Butter or full fat cream or full fat yoghurt.
There are so many recipes on the low card diet forum.

My advice to you is stop eating carbs and sugars as much as you can, They are like poison to the condition. You could say that I know I'm allergic to them. If they advise complex carbs, you can get them from vegetables, like salads, i eat at least one a day. You don't need to eat grains at all, as well as rice, pasta, potatoes and the like, you can have small pieces of fruit through the day for those vitamins and a few carbs. Stay away from fruit concentrate like sports drinks and coke. Diet drinks are fine, in moderation.

My best two pieces of advice are. if you have a hypo, have a dry plain biscuit and a cuppa tea or coffee, black no sugar, to raise them slowly. Have a low carb small meal as soon as you can. dont touch glucose as this will only put you back into hypo as you will have a yo-yo effect.
If youre feeling rough, do a fasting day, this will normalise your blood glucose levels. I've done it a few times now. Water is fine or black tea or coffee.

If you have any more questions @Brunneria will answer.

Hope this helps

Best Wishes

Nosher
 
@nosher's advice is perfect - esp the stick to very low carb bit.

You may find you can ease up after a while, but try it and see...
Unless you are already doing it?
 
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