RH - Preventing Bloodsugar drop overnight?!?!

1Kirstygrace

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I went to the dietitian today (which I found pretty useless to be honest, they told my what Google could have without the trip and gvae me a very basic leaflet with 'conveyor-belt NHS Eatwell plate information' and didn't really answer any of my questions! Very disappointing) I was diagnosed with RH about 6weeks ago but I've had trouble with sugar/carbs for years without knowing what I actually had.

Anyway, my question....
After waking twice at 2am and 3.30am - I finally got up at my usual time at around 5am, feeling sweaty, shaky, headachy with unusual dreams and craving food or something IMMEDIATELY. My blood sugar was 3.6. My last meal last night was 3/4of a Jacketpotato with coconut oil, a small serving Pollock and cabbage at around 7pm. - I frequently wake around 3am with a grumbly stomach but have just put this down to being low-weight as I have had a significant drop recently. I'm a very low weight at the moment and seem even more carb sensitive & sleepy if they are bigger than half the size of a 'usual' portion. So I'm stuck between needing to eat more to gain weight and spreading it out so I don't get hypo symptoms - I CANNOT go carb-free as suggested on here frequently as I would just waste away - tried it before and it is not a healthy option for my slender body type as I am usually very active too! I do avoid sugar and choose brown over white rice etc. No ripe bananas (those are the worst!) I favour smaller servings of brown rice pasta (I'm Gluten& Dairyfree) with larger protein rather than a pasta 'based' dish... I don't know whether rice pasta is even a good idea either as its high GI according to charts(?) The dietitian said it should be ok providing bloodsugars don't go below 4. Eat anything avoiding simple sugar as long as Blood readings don't drop below four was the general advice I understood from them anyway... but I'm now in overthinking mode perhaps! I know lots of pasta makes me feel awful so I keep to smaller 'side' portions instead.

SO.....
How do you prevent waking with the symptoms and what do I do???DO I get up and test it the first time I wake, and eat to prevent a further drop if its on the 4's low side??? Is the meal I had the evening before causing it or my lack of 'stored' energy/glucose with me being at a low weight/needing more calories in general do you think??? I eat 5times a day, 3 meals 2 small snacks at present. Any help would be appreciated! thankyou
 
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Brunneria

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Hi and welcome :)

Have they done any investigations as to why you have RH? Or did they just say 'you have RH, go and see a dietician?'

It certainly sounds as if the carb roller coaster has got you firmly in its grip. So you know what my first advice would be. :D However, you cay you CANNOT go carb-free.

That leaves you (as Lindisfel says) with two other macro nutrients to play with - protein and fat.
Both of them digest more slowly than carbs, which will slow the blood glucose release (google 'pizza effect' and you will see what I mean). They will also add calories.

Combining carbs and fats is, traditionally, a superb way to gain weight, so that may appeal.

Another factor to bear in mind is upping the fibre, because while that doesn't add nutrients or calories, it will also slow glucose absorption.

Have you mapped out your individual glucose levels after eating your normal diet? Regular before and after testing, to see which foods in which portions affect you? And when your lows come? That can help tremendously.
 

1Kirstygrace

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Thankyou Brunneria & Others.

They originally were testing me for Adrenals/Fatigue issues as my cortisol levels were very low, (in the 250's) as well as my blood sugars. The SST gave a large rise to 900's, so Addison's was ruled out - Then they started looking at just my bloodsugars alone, and I kept readings for over two months, and did the rest, they then put it down to RH and sent me home with "Go see a dietitian".

Good point/idea about the fibre. I do like my greens! I used to base my diet on very low carb high protein - I naturally 'verged' onto that as I felt better doing so over the years just personally, wasn't following the atkins diet or a fad diet or anything- I have only increased the carbohydrates really in recent months as another dietician told me "Your carbs are far too low for your activity levels" (as training 5days a week at the time) and to help my weight gain - (but she also told me to eat cereal, drink 250ml ricemilk Four times daily and have toast and jam instead of tuna and avocado for breakfast "In order to be more normal" and "what would I do when I'm at a restaurant on holiday" :p EVEN when I told her I was under investigation for RH and Carbs made me feel rubbish (!) ((In hindsight, I do wonder how some people get their jobs TBH these days)) I might add - I did NOT follow her advice. I have also since decided my dairy alternative rice milk seems to be a little sweet for me if I have ever added it to porridge on the rare occasions I have it, but een that seems to send me shaky in a few hours - I now make a small bowl with water with just a splash of ricemilk and add protein powder.

- I agree with you on feeling like I'm on a rollercoaster. I definitely feel better on a more protein based approach but have explained my concerns about feeling stuck at being such a low weight. Bread is an issue and trying to find a suitable GlutenFree ones -as most alternatives are very refined/rice flours/white flours or just bleached brown rubbish! I have just ordered some 'Oat' based bread with no flours, in a hope one slice of that should be ok with a protein at breakfast or an open sandwich with plenty of fats/protein etc for snacks. I did cut it out completely (s most would) but again, my weight dropped significantly in cutting things out. Waffles certainly werent a good idea the other morning either, I had one Birdseye potato waffle with chicken slices and within 2hrs was a shaking sally. I do think its very much trial and error isn't it really as you say. I was just wondering how to get around the Hypo: "I'll get you while you're sleeping" shananigans and if having a Jacket for dinner wasn't helping... Is there any good books you could recommend anybody too so I can educate myself on this new diagnoses of mine/ours???
 
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Brunneria

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I would recommend 'The Art and Science Of Low Carb Living by Voleck and Phinney to anyone who is considering going LC.
It isn't specifically aimed at RH (and probably doesn't mention it once) but it is a brilliant source of the LC science and how to create a well formulated LC diet. It also debunks a lot of the LC myths - while explaining things excellently.

Most of the stuff I have read about RH falls back on the eat-carbs-every-3-hours idea, which I find an unbearable way of existing - and I can't be the only one. I prefer to eat a couple of times a day, good filling meals of meat, fat, veg/salad. Last night we had a huge green salad with a homemade beefburger smothered in cheese, fried onions and mustard. No bun. that will last me til at least lunch time today, without a thought of snacking and phaffing. Eating like this used to keep the RH totally at bay, and I still prefer to eat like this, even though I have a choice nowadays.

As you will see from my sig, I have gone Gluten Free in the last 6 months, and am UTTERLY BLOWN AWAY to discover that as the effects of a lifetime of gluten dissipated (it took 3 weeks for me to start seeing a benefit, and about 4 months for the full benefit to emerge), I no longer get RH. So I can now eat a good few more carbs than I used to, with stable blood glucose. Inspite of this, I still eat LC because I prefer it.

Obviously, I am NOT suggesting that every RHer will be cured by GF. That would be absurd. But I have to speculate that there may be others out there with food intolerances that knock their hormones (including insulin and glucagon) off kilter.
 
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kokhongw

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Do note that both carbs AND proteins will stimulate insulin secretion. Fats less so. That is essentially why a low carb high fats diet is often helpful with RH.

But the underlying assumption is that the reactive hypo is due to excessive insulin responses to meals. If there are other reasons causing the excessive insulin, that needs to be investigated.

Take care.
 
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Resurgam

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I have come to the realisation that I have spent most of my adult life reacting badly to carbs, and as I reversed diabetes I went back into a slump in energy in the mid afternoons which was something I had as a teenager and in my early twenties until I stopped eating dense carbs.
Whenever I have been pushed into eating a 'normal' diet I have put on weight and been very ill - particularly when pregnant with my second child, I had pre eclampsia and that was very dangerous.
I have been most successful and happy with myself when eating low carb foods, and avoiding grains, potatoes and anything sugary. For most of the time I was barely restricting what I wanted to eat, as I was maintaining weight and energy without effort. If I didn't still own the suede mini skirts with the 24 inch waists I'd hardly believe I was ever that size.
 
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Kaz261

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I too have the same weight issues as you, which makes a low carb diet difficult for me.

I have reduced my carbs significantly to around 100-120 max per day. I ALWAYS eat them alongside a good amount of protein and healthy fat. For instance, I can tolerate a jacket potato for dinner providing it weighs no more than 150g uncooked and it's served with butter, cheese, a nice big salad and some meat.

In the early days after diagnosis I was losing weight every week and would also wake in the night hungry. I would also get up in the morning very often with a headache and feeling very shaky. I now have a white coffee (decaf only as caffeine raises my bs and drops it quickly) and once square of 80% dark choc around half an hour before bed. This seems to keep me steady all night and I don't have to rush to eat breakfast anymore.

It took me several months to feel semi-normal again with a lot of experimenting.

A few tips that work fine for me (we are all different though) are:

If I'm having bolognese for dinner (always homemade) I have 50g cooked weight of whole meal pasta mixed with courgetti.

My roast dinner include two small potatoes with plenty of green veg, meat and cauli cheese.

I seem to be ok with a maximum of 100g cooked whole grain brown rice as long as there's a good amount of protein and fat.

A thin slice of low GI bread with a couple of eggs, or salad and meat.

Breakfast is almost always full fat Greek yogurt with no added sugar muesli (no dried fruit), raspberries, blueberries, almonds and cinnamon. Keeps me full for around 5 hours!

It is possible to control RH and include some carbs. I found that as the weight gradually went back on, the better I felt.

Hopefully you can find a balance that suits you soon too.

All the best

Kaz
 
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DCUKMod

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I would recommend 'The Art and Science Of Low Carb Living by Voleck and Phinney to anyone who is considering going LC.
It isn't specifically aimed at RH (and probably doesn't mention it once) but it is a brilliant source of the LC science and how to create a well formulated LC diet. It also debunks a lot of the LC myths - while explaining things excellently.

Most of the stuff I have read about RH falls back on the eat-carbs-every-3-hours idea, which I find an unbearable way of existing - and I can't be the only one. I prefer to eat a couple of times a day, good filling meals of meat, fat, veg/salad. Last night we had a huge green salad with a homemade beefburger smothered in cheese, fried onions and mustard. No bun. that will last me til at least lunch time today, without a thought of snacking and phaffing. Eating like this used to keep the RH totally at bay, and I still prefer to eat like this, even though I have a choice nowadays.

As you will see from my sig, I have gone Gluten Free in the last 6 months, and am UTTERLY BLOWN AWAY to discover that as the effects of a lifetime of gluten dissipated (it took 3 weeks for me to start seeing a benefit, and about 4 months for the full benefit to emerge), I no longer get RH. So I can now eat a good few more carbs than I used to, with stable blood glucose. Inspite of this, I still eat LC because I prefer it.

Obviously, I am NOT suggesting that every RHer will be cured by GF. That would be absurd. But I have to speculate that there may be others out there with food intolerances that knock their hormones (including insulin and glucagon) off kilter.

Brunneria - In your post you say you can now eat more carbs than before. Is that more of any carbs, or more carbs, provided they're gluten-free carbs?
 

Brunneria

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Brunneria - In your post you say you can now eat more carbs than before. Is that more of any carbs, or more carbs, provided they're gluten-free carbs?

I have to stay strictly Gluten Free. If I have gluten, my bg starts spiking again, and my RH re-emerges.

Thanks for asking - I need to try and remember to make it clearer. :)
 
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DCUKMod

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I have to stay strictly Glten Free. If I have gluten, my bg starts spiking again, and my RH re-emerges.

Thanks for asking - I need to try and remember to make it clearer. :)

It was more I was deafened by everyone going strictly gluten-free, and as I'm gluten-free myself, I do appreciate it's certainly not impossible to do, but it does add an additional level of complexity to the diet - particularly when eating out.
 

Brunneria

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Yes.
But I seem to be in the surreal situation that I can now relax the Low Carb somewhat, in exchange for the Gluten Freeing.
Am still struggling with it, to be honest.
Decades of eating one way, and now I am switching to a weird compromise.
Still early days though.
I expect there is another surprise just round the corner.

Sorry for the derailment of your thread @1Kirstygrace
 
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1Kirstygrace

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Kaz thank you for your advice - I feel like I'm not alone in this.. Its been so difficult and frustrating working with dietitians about weight gain, getting them to take my symptoms seriously about the carb increases. I lost weight from a quite already low 47kg to a very dangerous 41kg within a few weeks and only just managing to keep it steady now without losing anymore. Its been ridiculous, I look like a rake! I'm slowly slowly learning what works for me and what doesn't and it seems very similar to the diet you shared; whereby having to mix a lot of things to tolerate them and only managing smaller amounts of the carb with certain other ingredients or protein/fats etc. But everybodys still telling me "I SHOULD" be able to have a full large potato with beans or a full bowl of pasta - and I just cannot! I also wake several times in the night - the dietitian told me to speak to the doctor about it as it shouldn't be happening even when I questioned "Could it be the carbs the night before do you think" - The only other thing I can assume is with the weight loss my body doenst have enough stored energy and reserves to get me through the night so I'm waking up early and my bodys shouting for me to eat "now". I dare say, Chicken is on the menu and not a jacket potato tonight! And see how we go..
 
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1Kirstygrace

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DCUKMod: - I know, the GF is also a pain in the bottom for complicating things but this is necessity rather than choice (believe me!) It causes too many inconveniences for it to be a choice for me!
 
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Lamont D

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Hi @1Kirstygrace
Welcome to the forum and the real world of RH!
There has already been some great advice and I get the problem of getting your diet right and the balance that makes us rh ers feel good.
We have been there and unfortunately it takes time to discover what foods are going to be good for you.
This is now the time to find out as much as possible about RH. Knowing what sends you hypo and even hyper is essential in controlling the condition.
This cannot be done literally overnight, you may have to become obsessive about what food goes in your mouth and find out how much it affects your blood glucose levels.
It is all diet and no dietician I've come across understands RH.

The best advice is to eat to your meter and use trial and error to get control.
Once you get your blood glucose levels on or near normal levels the symptoms won't be as bad and your health will improve.

RH is about you and what your body can tolerate. It is usually carbs, any carbs. Sugars of course but the carbs are generally the worst.
I cannot tolerate potatoes at all! Wheat is bad, any grains spike me especially porridge. Pasta, bread, pastry and so on.

How do I eat? Plenty of protein, plenty of saturated fats with the protein. Full fat yoghurt, salad vegetables and I fast as well! It seems my body does not like food and my pancreas kicks off. Too avoid food rather than tolerate.
If you had an intolerance to peanuts would you eat them?
I don't eat a lot, I have snacks when I feel like it.

On exercise, I would be careful of doing too much but doing chores and walking, swimming but nothing strenuous! Your body will react to serious strenuous exercising.
The last thing I need is a liver dump.


Read our forum and the many different approaches to controlling RH.
Experiment and test. Everybody that does the very low carb approach has success with control.

Finally, your body is at this time reacting to what your eating.
A change in diet will give you an idea why you have lost weight.
If you have the condition your body will help you get to your proper weight when it is happy and not going hyper and hypo all the time.
In sleep, the reason why you are getting low numbers is that the insulin response is carrying on over the hours till you go hypo because of the combination of carbs and fluctuations in your blood glucose levels.
Until you get control, this will still happen.
One of our mantras we use is, 'If we don't spike we don't hypo!
Don't create the need for insulin and the spike goes away!
Logical really and that's why most doctors, dsns and dietitians don't understand RH.

Keep asking and let us know how you are doing.

Best wishes
 

DCUKMod

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DCUKMod: - I know, the GF is also a pain in the bottom for complicating things but this is necessity rather than choice (believe me!) It causes too many inconveniences for it to be a choice for me!

I'm unfortunately not in the "conveniently GF" bracket either, so I do understand what you mean.

1KirstyGrace - I don't know how tall you are, but I skirt around the 48kg bracket, and am very slight myself. Almost two years ago, after some surgery, I lost a couple of kilos and had to get it back on. I did manage it, but it took a couple of months of constant effort. At that point I had been LC for almost 3 years, but I wasn't GF. I wasn't keen to up the carbs to gain weight, so I ended up just eating a bit more of everything else, and consciously when I felt I had eaten or served myself with enough, I'd add just a little bit more. I also had more berries with double cream that I normally might, just to keep the intake topped up.

My bloods stayed very good, as evidenced by my Libre. Boy was I glad to get back to my usual range and not to be purposefully overeating any more.

Do you keep food, bloods, weight and feelings diaries (can be the same diary, obviously), so that you can track back and review how things were going at any given time, and maybe even get some decent insights into where there might be hot spots, both positive and negative?

I'm sure you'll find your way with this. Just be a little bit patient (says she who doesn't have the patient gene).
 
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Lamont D

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I totally agree, a food diary is so essential for us RH ers!

If you keep one the facts speak for themselves and your medical team can see the difference in how you control your condition without the usual dietary advice given about carbs.

It is a really a good way to see what is happening to you as well.

Best wishes.
 
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Kaz261

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Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Kaz thank you for your advice - I feel like I'm not alone in this.. Its been so difficult and frustrating working with dietitians about weight gain, getting them to take my symptoms seriously about the carb increases. I lost weight from a quite already low 47kg to a very dangerous 41kg within a few weeks and only just managing to keep it steady now without losing anymore. Its been ridiculous, I look like a rake! I'm slowly slowly learning what works for me and what doesn't and it seems very similar to the diet you shared; whereby having to mix a lot of things to tolerate them and only managing smaller amounts of the carb with certain other ingredients or protein/fats etc. But everybodys still telling me "I SHOULD" be able to have a full large potato with beans or a full bowl of pasta - and I just cannot! I also wake several times in the night - the dietitian told me to speak to the doctor about it as it shouldn't be happening even when I questioned "Could it be the carbs the night before do you think" - The only other thing I can assume is with the weight loss my body doenst have enough stored energy and reserves to get me through the night so I'm waking up early and my bodys shouting for me to eat "now". I dare say, Chicken is on the menu and not a jacket potato tonight! And see how we go..

I always believed my night time/early morning symptoms were as a result of my body having little in reserve and to some extent that could have been true. I now believe that what I ate the day before played a large part in those unwanted symptoms. I received the exact same advice as you from the dietitian ie. jacket potatoes, fruit loaf, crumpets and bananas as a snack . Every night before bed I would have 3/4 crackers with cheese and tomato and that was in top of a carby dinner. Hence I know believe my diet was the main cause of the night time symptoms. Once you gain better control during the day I'm sure you will feel better during the night. Try a small amount of dark chocolate before bed or similar, just to sustain you and keep your levels steady.

If you can fund one, the freestyle Libra is brilliant for us RHers, especially while you're experimenting with different foods, quantities and combinations. It'll also show you what your levels are doing overnight. I was convinced mine dropped, but they rarely did (unless I lay on the sensor!). In actual fact it showed a nice steady, flat line all night.

Try not to worry too much about your weight. In my case, I think the worry contributed to the weight loss! Once I started to maintain my weight and I relaxed a little (at one point I was almost obsessive about getting as many calories as I could), I felt better and my weight gradually increased. I lost over a stone initially, but have now put 6/7 pounds back on. If I'm ill or stressed (as I am at the minute) it does drop a bit though, so it's an ongoing battle.

Good luck and welcome to the forum by the way