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Reactive Hypoglycaemia

So glad you found us........eventually

There is an information page on the home page if you can find it!
I have been in touch with the powers that be because the information is telling you to eat carbs .( in a nutshell!)
Which for RH ers is totally wrong.

Yes we do need to extend our info somewhere.
 
Hello everyone,

I've read through all the posts here and have been taking a lot of notes, so thanks to everyone - especially nosher8355 and Brunneria. I think I will begin further adjusting my diet soon with the help of a dietitian.

A quick background about myself:
- I'm not a diabetic (took the blood test and the sugary drink test) but have a parent with type 2
- I am pretty sure that I have RH but can't prove it yet. Specifically, I had "crashes" a few times each year for the past several years and only eating some carbs right away made it go away. (The crashes feel severe - my body goes into a "fix this situation right away or else" emergency mode which I recognize right away. Extreme weakness starts, my mind gets cloudy, limbs go jittery, my heart pounds, feeling of impending doom, etc. I couldn't test my blood sugar even if I wanted to because I felt so poorly.)

- I keep a food journal. Crashes in the past have happened after a snack consisting of 1 cup of 1% milk plus a banana or a meal of quick-cooking oatmeal with bananas and rice milk (happened at least twice with that meal). For the latter case, one time only an ice cream snapped me out of it while cold water on that hot day did nothing for me. With that said, I often eat a banana with 1% milk and it causes no problems. These days, I eat oatmeal with some extra fat such a full fat cream for breakfast and I believe it evens out the blood sugar since I rarely go hypo afterwards, but I don't know for sure what my blood sugar levels are since I don't measure or even own a monitor.

- I have been to an endocrinologist, but he wanted me to do a multi-day fasting test in the hospital, which I refused. I also prefer not to go back to this type of specialist if at all possible for other reasons.

- My GP tends to agree with the RH diagnosis but thinks I need to eat complex carbs to prevent the crashes. I'm not sure about this advice due to my understanding of carbs and understanding that doctors aren't too familiar with RH.

Main Problems:

- Fear: I live in a huge FEAR of a hypo, even though they don't happen too often. Specifically, I fear a crash in public without being 100% confident in my ability to reverse the symptoms or get help stresses me out. Often I feel safer in my home and near my kitchen where food it nearby. This is causing havoc in my enjoyment of life.

-Strategy to reverse hypos: I don't know what is the MOST EFFECTIVE method - glucose tablets, glucose drinks, apple juice ,orange juice, 1% milk, candies, etc. (I'd also like to not carry around so much extra food with me just in case.)

Solutions so far:

As I mentioned before, hypos are not a monthly occurrence for me even with a non-low carb diet, but even a couple hypos a year is enough to cause me problems in life.

So far I have managed by taking an entire spare meal and extra fruit with me in a bag (this gets heavy), reading up on hypoglycemia with the Dummies Guide to Hypoglycemia book, changed my meals somewhat (more fats) with the help of a dietitian (she is helping me for something else, not for hypos), and I take along with me glucose tablets (which I have yet to try) and often a bottle of regular Coca Cola. I even have some restaurant sugar packets with me but I don't know how effective they are. (Bananas and some corn flakes and some bread in the past have helped to reverse a hypo, but nowhere as quickly as I desire!)

Questions:

1) Do the glucose tablets work effectively and quickly to reverse the hypo? I have never tried them and would like to hear feedback from someone who has used them to snap out of a hypo. (If so, maybe I can afford to carry less emergency food with me.)

2) There are glucose liquid drinks on the market which are supposed to be the similar to the tablets. Are they as effective for you as the tablets (assuming the tablets are effective.)?

3) What do you use to reverse a hypo, if not the glucose pills? Coca cola? Skim milk? Candy? Sugar packets?

4) How do you ease the fear of going into a hypo during your daily life while out in public? Is it enough to tell yourself "I can get out of this situation" and have glucose tablets with you? I want to hear what real anti-hypo safety mechanisms you have designed for yourself (other than a low carb diet) that put the anxiety of crashing away from home out of mind.

5) At what point during a hypo is it time to call for help, such as an ambulance or at least ask a stranger for help? I've read that hypos should be treated with glucose tabs or juice or candy, then wait 15 minutes, then take a reading, and then repeat if needed. But I haven't read anything about when it's too late to self-treat and when it's time to call for an ambulance.

Thank you for reading and for your help!
 
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The FEAR has, at times, been a major factor for me.

My hypos are accompanied by incandescent rage, which is traumatic for me, and awful for the people within radius.

I realise that fixing RH with glucose seems like the obvious answer, but from my experience, it really, really, isn't.

A far better solution is to not go hypo in the first place.

That requires eating slow release foods regularly, so your body never has the high that triggers the low. I completely understand that this is far easier said than done!

For me, one of the benefits of a ketogenic diet (very low carb) is that my bg stays beautifully level. I rarely go above 7mmol/l and almost never below 5mmol/l. On a very rare hypo (usually caused by stress, exercise and or being unable to eat on schedule), a ketogenic hypo is a totally different experience than a carb fuelled hypo. It is gentler, slower, less panicky. There is plenty of time to reach into my bag and snaffle the 9bar that is ALWAYS there. By eating a seed and nut bar, rather than pure sugar, i get a controlled rise, equally gentle.

I have been through a lot of different phases with this dratted RH thing. Going very low carb and entering ketosis has been the most liberating experience. Although the cost of the liberation is giving up lots of the things you mention - including bananas.
 
Oh, and my personal experience of hypos is that i have never needed to call for external help, and don't ever expect to do so.

Type 1 and 2 diabetics, on insulin may in extreme circumstances require assistance, but a RH hypo, caused by unwise carby eating? No, not in my experience.

How familiar are you with the process of the hypo as it happens in your body?

The bg drops, we loose mental acuity, concentration, reaction time, etc.
But our own body recognises the low.
And as a response, releases a whole cocktail of stress hormones, including adrenalin (causes the shakes, jitters, etc) which in turn triggers the liver to release glucose into the bloodstream. Which raises bg. Which ends the hypo.

So, by the time you get the panicky jitters, your own body has already stepped in to resolve the situation. Stuffing gluco tabs may raise the bg higher, and a bit faster, but the RH hypo was sorting itself out before you even reached for the tablets.

Of course, this assumes there is glucose waiting in the liver, and it assumes that your hormone signalling is functioning. But if you only get rare hypos, then i think those are pretty safe assumptions.

Hope that helps to reassure you.
I know the FEAR ruled me for a long time, and i wish someone had explained this to me back then, it would have saved me a LOT of angst.
 
reverseosmosis said:
The crashes feel severe - my body goes into a "fix this situation right away or else" emergency mode which I recognize right away. Extreme weakness starts, my mind gets cloudy, limbs go jittery, my heart pounds, feeling of impending doom, etc.
Click to expand...
Described it like a boss, the "impending doom". Tell me what GP/endocrinologist knows what that feels like!

reverseosmosis said:
I have been to an endocrinologist, but he wanted me to do a multi-day fasting test in the hospital, which I refused. I also prefer not to go back to this type of specialist if at all possible for other reasons.
Click to expand...
OMG he wanted you to do that too!? The last thing you'd want to put someone through. He may as well said to me, "Please come and stay at our torture chamber where you'll go through living hell for three days, and we mean you WILL visit the depths of HELL not figuratively speaking ACTUALLY speaking. And we cannot guarantee we'll pull you back out of it either, you could die and we don't care". That's the attitude I got from the endocrinologist I saw.


reverseosmosis said:
My GP tends to agree with the RH diagnosis but thinks I need to eat complex carbs to prevent the crashes. I'm not sure about this advice due to my understanding of carbs and understanding that doctors aren't too familiar with RH.
Click to expand...
I tried complex carbs, and maybe complex carbs work for people who like disgusting tasting food. Brown pasta, yeah... I love that stuff don't you? There's a good reason why they polish rice and refine wheat. But some people love the taste of the good old mother earth natural wholesome products. I'm not one of them. But I do love fresh veg and full foods, so I opted for LCHF instead. It surprises me why the dietician never suggested Ketogenic to me, it would have been the logical way to go.


I've been there, for several years this thing PWNED me bad and I didn't go out unless I really had to. And like you I used to take loads of food with me if I did. The fear will pass when you can see for yourself your BG sensitivity is more stable. By that I mean when you don't feel symptoms of low BG like you used to.
The fear is your friend, you want it whilst you're prone to symptoms though.


reverseosmosis said:
Strategy to reverse hypos: I don't know what is the MOST EFFECTIVE method
Click to expand...
Prevention is the best treatment - ie don't eat the carbs that bounce your BG around so you end up getting hypo symptoms in the first place.
When I was on carbs I found toasted oats (Granola) cereal bars were the best to stave off hypos. As soon as I felt BG going down I'd have one of those and it would perk me up for another 30min. But if disaster struck then something like an apple or apple juice would do, I even had spoonfulls of sugar or honey at times. Glucose tablets... worth carrying but to be honest if you're carrying cereal bars and apples with you, it's unlikely you'll get low enough to need glucose.
 
Brunneria said:
For me, one of the benefits of a ketogenic diet (very low carb) is that my bg stays beautifully level. I rarely go above 7mmol/l and almost never below 5mmol/l.
Click to expand...
Mine is the same. I was all over the place before. 4mmol/l - 11mmol/l easily in one day. Now I'm mostly around 5.3mmol/l
 
Reading these is like reading my notes. I've been getting my attacks on and off for 20 years and only just started testing my blood, i used so many strips in a month I've given up testing now. When I was on weight watchers and working it happened everyday for months. 2 months ago I felt off everyday even on the drop and my blood was 5. I'm ranging 10-4 mostly and have been as high as 11 and lowest i caught was 3.3 This month i feel fine. gp refuses to test me for rh but suspects pre diabetes. but it can't have been that for all the years. My gps have never figured out what my turns are and i cant figure out the triggers. Last month toast with jam or sausage and mash did it, a big bag of sweets is my bad trigger. Too much physical activity triggers it too, But this month I've been fine. Dont get it. Wish i could afford to keep testing.
 


Sorry bit late to work and travelling last night!

Hi @reverseosmosis

Ok to start, your eating habits are not good for RH. Eating things like milk, banana, oatmeal, rice milk, ice cream, you are literally putting petrol on a fire! All of them are full of carbs. And the one thing we RH ers, can't have in more than very small quantities is food that has carbs in.

Your fears and anxieties are symptomatic with RH.
I have done the multi day fasting. It is a 72 hour fasting test. And while the stay in hospital was awful, the test results were good for me. It discounted all other conditions except it proved I had RH. Oral Glucose Tolerance Test, will show how quickly you spike and then if you hypo. That is important, but the long fast can eliminate cancer and pancreatitis.
You will need one eventually, if you want a thorough diagnosis.
You definitely need a blood glucose monitor! How will you know what is going on what your food is doing to you? You are only guessing.
If you have a certain issues with a endocrinologist, then get your GP to refer you to another hospital. I travel to Manchester to see mine and he is brilliant!
You don't need or want complex carbs or any carbs at all, you can live without them, I do and other RH ers do. And we are fitter and healthier because of that. You will only find out if you eat to your meter and test and experiment and record it in your food diary.
If you don't want to live in hypo hell, then don't! I won't ever again on purpose!
If I have a hypo, my last after an OGTT, I have a plain biscuit and a cuppa, no milk, no sugar. Which brings me back to normal levels slowly but surely, and I don't spike! The methods you post will have your blood glucose levels bouncing all over the place.

Your questions
1. Don't use glucose tablets, no way!
2. Don't use glucose drinks, no way!
3. A plain biscuit and a cuppa.
4. I don't go into hypo because I don't eat carbs.
5. If you really feel bad, then phone for help. But the treatment you will get will be wrong!
I carry a necklace and a card in my wallet describing my condition and my treatment of it.
The medics aren't trained in treating RH.
But prevention is much better, not going high to not go low. Don't go hyper, you don't go hypo!
Control is the key to unlock your healthier lifestyle!

You are worried and concerned, but if you follow the advice from these knowledgeable posters, you will get better and feel better.
The anxiety you feel is symptomatic of RH!
There are a lot of symptoms.
Have a read of the Wikipedia page on RH, there is quite a bit of information on there.

Keep the questions coming, you need to understand the condition and how to be in control.
Hope this helps.

Welcome to our unique club!
 
Hi @Wendolph ,
It sounds as if you have got some good control. You just need to try and reduce the baddies even more and stay in normal range.
I have never used physical exercise to lose weight or that way to get healthier. I have used my ketosis and walking and working to help with control. Just more walking will help if you feel like you are spiking too quickly.

Have a word about getting a referral to an endocrinologist, because if you have kept a food diary, that will show, where you are struggling a bit. And your need to know what is happening to your bloods. I did eventually persuade my GP to give me one and a prescription for strips. Indeed my prescription is printed with use for RH!
It can be daunting to have a go at your GP, but you will get them if you stand your corner, especially if you provide information from your food diary.
Hope this helps and keep well.

Best wishes.
 
Hiya @nosher8355 I got a part time job so I've prob had a very small cereal or toast or fruit in morning with my coffee and been fine til i come out of work and have fruit and later a small meal. I've even had a couple of slices of pizza and felt fine. So small portions is working. But i don't feel the high unless its over 11, i just feel awake lol. I'm not as reactive as you or other people on here.

Today I had 4x toast with jam and 15 minutes later I was high as a kite at 15.8 an hour later I was 10.5 then 5.7,5.2,5.9,5.3 then at 5&1/2 hours felt the drop, at 6 hours 3.5 then I had dinner.
So I know sugar is my trigger but will have to buy more test strips to get to the bottom of it. I'll ask my gp for more tests.
 
Hi @Wendolph.
Yes it is all about testing,experimenting and smaller portions, but I think you won't be able sustain that unless you reduce your carbs more.
You could a little more often and that's one way to reduce your carbs.
You have a late reaction like myself, but why do you want to have a high?
Can you do low carb or is there a reason why you dont want to eat that way?
 
Hiya @nosher8355 I don't want to have a high. I just notice I get highs more than lows, i think the way im used to eating is snacking lots, I get the desire to eat a couple of hours after a meal so I Think I'm probably bumping up my blood sugar without realising. This morning I joined my daughter with her jam on toast and was hungry so ate more than i should have so because I felt it instantly decided to test.
I can try low carb, just never done it before. Its bad eating habits, 'hungry? eat a sandwich or toast.....' Because of feeling awful most of the time not knowing the cause its an 'eat quick now' reaction ie crisps and chocolate which I've changed to fruit although I do have a crisp addiction .
I'm just desperate for a diagnosis. All these years, I'm scared of damaging my body. I already have hypothyroidism and vitamin D deficiency, weak muscles, aswell as trying to figure out if this is rh or another blood sugar related thing.
 
I understand now!
I have learned that all the other foods that makes me ill are toxic to my system and having read about the condition and what carbs do to me, that I did not have any hesitation to dump these foods. It was very hard, but I wanted to be old self again
RH is controllable. But you have to have a change in thinking about what you eat.
To put it simply, if you had a peanut allergy and you were told that it would be serious if you don't stop eating them!
We and I'm including you, are allergic to carbs and sugars that turns into glucose very quickly in our blood. That triggers the extra insulin that causes the lows.
Having hyperthyroidism also plays havoc with your blood glucose levels. So low carbing would help that. As well as the muscle weakness. You cannot believe how much extra energy I have now! Because my energy comes from my body and not from carbs!

I was desperate for a diagnosis and had to get my GP to refer me. It wasn't easy but if you show him what is going on and back it up with a food diary, he will see that he is out of his depth with RH! They are not trained for it!
Have a read about how low carb can successfully help with controlling not only RH, but your other problems as we in the success stories forum.
Read my link as well, my story, is my first blog!
Best wishes.
 
Thanks @nosher8355 I have read your blog and the whole thread.
Trying to convince various gps is half the problem, I even had a neurologist suggest it 8 years ago but fasting test normal and it was taken no further. I think subconsciously I'm eating normally to record it and try prove it does affect me.
Having a name for what I've got is so important, to prove I'm not making it up to my family as well as drs.
I get drunk very quick and level out and get tired, could that be part of it? I don't drink often or to excess as 1 will do the job.
My weak muscles is mostly to do with my low vitD which supplements are helping with. I've got hypothyroidism which is slow metabolism. But better eating will help with that as well as losing some weight. I've not lost a pound in 3 years which is weird coz i was 7 months pregnant before I put on any, i was worried.
But your advice and knowledge has been fantastic. Even knowing other people have gone through this. Thanks
 
Yes, I've had some disbelieving GPs.
And had my run ins with them and nurses.
My normal fasting blood, is normal and my hba1c is normal, that's what gave my endocrinologist a clue about RH. And the lows being non diabetic!
I've always had a problem with drink, it was very rare, I got past three pints and I was always a bit drunk afterwards and a bad headache after. But if I drank Bacardi and diet coke, I could drink a few of them, but after I was forty even one pint was too much and gave up about ten years ago completely. Mainly because of the threat to my fatty liver.
I no longer have a fatty liver. Because of my lifestyle.
Do you need to lose weight?
If you do, then eating more full fat will help if you can. If you low carb.
For your future health, I hope you do take our advice on getting rid of the baddies that makes us ill.
Hope this helps!
Ask any questions, one of us will be around.
 
Is there a private consultant in the UK who specialises in RH?
 
My bmi is 30, I'm not fat but alot heavier than im used to and than id like to be. Can't do physical activity just stretches, I cant jump or run, theres no bounce in my muscles since past couple of years. So I just walk, do stretches and rarely sit down. I'd glady give up all the bad food even chocolate as long as I get a bag of crisps every now and then (i wonder if its salt? I don't put salt on my food) lol best get planning this new 'diet'
 
Yes you have a positive attitude towards the condition.
I don't but if you have control, there shouldn't be a problem if you have a treat now and then every so often, but not a whole packet! That's why we experiment! To see what we can get away with. I love baked beans, I have done so many tests and experimented and I can manage about a dozen at one meal.
If you low carb, you might need to add salt to your food. I have never done so, but I do now.
The same with drinking water, you will need to have more and maybe restrict your caffeine.
Just little things make a difference.
 
Hurrah! Saw a locum dr today who has type 2 diabetes. He said he's never heard of rh and has written a letter to the diabetic specialist at the hospital for referral in front of me! I'm over the moon right now
 
Wendolph said:
Hurrah! Saw a locum dr today who has type 2 diabetes. He said he's never heard of rh and has written a letter to the diabetic specialist at the hospital for referral in front of me! I'm over the moon right now
Click to expand...
Woohoo!
Yay!
You must be pleased, the fight goes on!

Really made up for you!
 
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