Reactive Hypoglycaemia and exercise

[Suzy D]

I'm 61, newly diagnosed and just starting to come to grips with the funny eating.

Before RH was suspected, I had several weeks of a very low exercise tolerance (getting exhausted and breathless after 15 minutes of walking, and swimming totally out of the question).

It is starting to slowly, very slowly get better now. I am currently able to walk 30 minutes at a time, or up to a total of 60 minutes of walking a day in instalments. Or I can do half an hour of gentle pilates.

I would like to get back to at least 8000, ideally 10000 steps a day, three one-mile swims (front crawl, medium to fast lane) per week and the odd round of golf or bike ride. Plus pilates or tai chi three times a week.

At the moment, I don't see how I will manage the swimming with RH, which makes me sad. I used to – as recently as the summer – have dinner at 6 or 7 pm, sleep, get up at 6am, walk to the pool before breakfast, start my swim at 7 am, and be home having a big breakfast at 8.30.
At the moment, I am having a one-egg omelette with a small salad at 3.30 in the morning, get up at 6 and then have to eat again at 8 am.
I can currently just about imagine trying a tiny swim in the middle of the day, one hour after eating and one hour before eating.
Without swimming, my cardiovascular fitness will decline (and I will get more backaches). Mornings have always been my best time to swim, because I can feel my stomach being full even if I ate an hour ago.

My understanding is that the low exercise tolerance stems from my body not being able to get enough energy out of carbs/sugar, and it's harder to get energy out of protein and fat.

Has anyone on this forum managed to get back to their normal exercise levels after being hit by RH? Thanks in advance!

 

[Lamont D]

I'm 61, newly diagnosed and just starting to come to grips with the funny eating.

Before RH was suspected, I had several weeks of a very low exercise tolerance (getting exhausted and breathless after 15 minutes of walking, and swimming totally out of the question).

It is starting to slowly, very slowly get better now. I am currently able to walk 30 minutes at a time, or up to a total of 60 minutes of walking a day in instalments. Or I can do half an hour of gentle pilates.

I would like to get back to at least 8000, ideally 10000 steps a day, three one-mile swims (front crawl, medium to fast lane) per week and the odd round of golf or bike ride. Plus pilates or tai chi three times a week.

At the moment, I don't see how I will manage the swimming with RH, which makes me sad. I used to – as recently as the summer – have dinner at 6 or 7 pm, sleep, get up at 6am, walk to the pool before breakfast, start my swim at 7 am, and be home having a big breakfast at 8.30.
At the moment, I am having a one-egg omelette with a small salad at 3.30 in the morning, get up at 6 and then have to eat again at 8 am.
I can currently just about imagine trying a tiny swim in the middle of the day, one hour after eating and one hour before eating.
Without swimming, my cardiovascular fitness will decline (and I will get more backaches). Mornings have always been my best time to swim, because I can feel my stomach being full even if I ate an hour ago.

My understanding is that the low exercise tolerance stems from my body not being able to get enough energy out of carbs/sugar, and it's harder to get energy out of protein and fat.

Has anyone on this forum managed to get back to their normal exercise levels after being hit by RH? Thanks in advance!

Yes, me!
However, it's a big however.
It is so individual how much and what exercise we can do. And there is good days and bad, until you get your health improved from not going high and low all the time.
At the moment, because you are still in the altering your carb intake, and becoming less reliant on them for your energy. The lethargy, amongst other symptoms are because of the carbs. We are intolerant to the majority of carbs.
To explain more about intolerance with carbs, healthy foods etc. And why it is individual.
It is based on a percentage of carbs in a product.
I can only process around 4% of carbs in most items, you may be more or less. Before I get a spike above around 7mmols. Which is the trigger for my brain to get my pancreas moving with more insulin.
If you don't spike, you don't react, no overshoot, no hypo.
Staying in or just above normal levels, is the best way to control your BG levels.
Back to exercises. I love to walk and it helps with my restless legs syndrome. To keep busy. I am also my wife's full time carer, which means I'm on my feet and doing the shopping, cleaning, cooking etc every day.
And the best walk is for me early evening. Fifteen minutes after our evening food, anytime before 7(ish) cos I then can go to bed knowing it's more than four hours after food and not having a hypo. I walk or stroll for fifteen minutes or a bit more, to give me a short time away from the house and relax into the walk.
I don't think I need much more. I believe Pilates is good for your mind. Anything that helps is good.
You can only do, what you can do.
Take it easy on yourself, you have been given a reason why you have the symptoms. It will take time to adjust not only for your body but also for you mental health. And your state of mindset. Be proactive.
When I did my fasting test. The light bulb moment, that my lethargy disappeared and my energy levels improved. I am not far off seventy years young. I feel better than when I was fifty.
Best wishes, keto asking.

 

[Lisa246]

Hi,

I have been having some issues with exercise as well. I have had RH for about 8 years now and it seems to have gotten worse over the years no matter how strict my diet gets. I would like to be able to go walking with my dogs more, but most days I am worried and high anxiety which gets the better of me or if I do go I would say generally I always suffer from low blood sugar. I can't seem to walk longer than between 10 to 20 mins.

I have just recently downloaded the Carbs & Cals app so that I can try to lower my carb intake to 130g per day to see if that helps. I wanted to go Keto but I am scared of doing that so I thought I would try this first.

I guess I just feel really restricted and wish I could exercise more. I'm always looking for the magic food formula that will enable me to do this.

Any suggestions??

Thanks Lisa

 

[Lamont D]

Hi,

I have been having some issues with exercise as well. I have had RH for about 8 years now and it seems to have gotten worse over the years no matter how strict my diet gets. I would like to be able to go walking with my dogs more, but most days I am worried and high anxiety which gets the better of me or if I do go I would say generally I always suffer from low blood sugar. I can't seem to walk longer than between 10 to 20 mins.

I have just recently downloaded the Carbs & Cals app so that I can try to lower my carb intake to 130g per day to see if that helps. I wanted to go Keto but I am scared of doing that so I thought I would try this first.

I guess I just feel really restricted and wish I could exercise more. I'm always looking for the magic food formula that will enable me to do this.

Any suggestions??

Thanks Lisa

Hi Lisa, @Lisa246 ,
Welcome to our forum.
And I know where you are coming from.
If it isn't the energy levels, it is the lethargy, if it isn't the worry of it, it's the anxiety of how do I get there and back. If it isn't the stress of getting ready, it is the actual getting though that !!!!!!!! Door.
As you are probably aware one of the sayings that always comes around, when starting is baby steps.
This covers both the dietary approach and the exercise.
Walking, other than housework, shopping etc,the only exercise possible for me is a short walk. But I plan it after meals, so, after a meal fifteen minutes, you do a fifteen minutes walk. It is so good for blood glucose levels and also for your health.
Dietary recommendations from myself, are a balance of protein, leafy vegetables (not the starchy ones), good saturated fats and tailored to you, by you, for you. What works for me, might not work for you. My favourite food is probably not yours, if you see what I mean, affordable, and others. I'm lactose intolerant, but the likes of cheese is part and parcel of a low carb diet, calcium and full fat, low carb.
How you get to a stage of better energy, with RH, ito walk your dog's is by reducing your carbs.
RH is food related.
It's the carbs.
But, baby steps again.
It is more effective doing it over a few weeks, and I would suggest, you reduce it by around 50g or so every few days. Until you can comfortably get along with very few carbs.
As you get lower, you might want to have another think about going keto, I am currently just above keto but remain in normal BG range. Do you have a blood monitor? But I have done keto many times, I also use intermittent fasting.
What tests have you had?
Have you considered counselling for your anxiety?
I have gone through counselling three times of a few months sessions.
I had a breakdown during covid, and contacting my GP, then my local services for counselling.
It may take a while, but help is there.
You have done the first baby steps, by asking a question on this forum.
The next bit is really up to you.
Keep asking, try and be a bit more positive for you dogs sake....!
Take care, be safe.
Best wishes

 

[Lisa246]

Hi Lamont,

Thanks for your reply and all the information you have suggested.
Your right RH and dealing with all the issues is very stressful and I seem to have a lot of ups and downs both with the RH and my anxiety.
I had a really bad time of it about a year ago with both but after a lot of appointments with my endocrinologist and a dietitian I managed to stablise the RH but that left me with a lot of anxiety. But I am working on it. I did 3 months of CBT but I probably need more. The doctor recommended a SSRI but I was worried about it affecting my health (blood sugar) so decided against it.
I am on 1000mg slow release of metformin which my endocrinologist has recommended. He wanted to put me on more but I had a lot of stomach issues on the higher dose so came off it, but still on the 1000mg. Plus it did not help.
I do have a monitor but I was testing too much due to my anxiety and have slowly managed to wean myself off it. Or rather should I say I am more sensible about testing. I tried a libre sensor for a bit but that was worse, as it was always going off and made me really stressed.
I can't remember my last blood test results, I just remember my fasting bloods were normal.

I have to eat every 2.5 hours because my blood sugar is always dropping.
So I feel like I'm looking for the Holy Grail with RH because I can't seem to get it right.
But I'm going to try the baby steps suggestion and reduce my carbs and see how I get on.

My dogs appreciate the help LOL anything for longer walks!!

 

[Lamont D]

Hi Lamont,

Thanks for your reply and all the information you have suggested.
Your right RH and dealing with all the issues is very stressful and I seem to have a lot of ups and downs both with the RH and my anxiety.
I had a really bad time of it about a year ago with both but after a lot of appointments with my endocrinologist and a dietitian I managed to stablise the RH but that left me with a lot of anxiety. But I am working on it. I did 3 months of CBT but I probably need more. The doctor recommended a SSRI but I was worried about it affecting my health (blood sugar) so decided against it.
I am on 1000mg slow release of metformin which my endocrinologist has recommended. He wanted to put me on more but I had a lot of stomach issues on the higher dose so came off it, but still on the 1000mg. Plus it did not help.
I do have a monitor but I was testing too much due to my anxiety and have slowly managed to wean myself off it. Or rather should I say I am more sensible about testing. I tried a libre sensor for a bit but that was worse, as it was always going off and made me really stressed.
I can't remember my last blood test results, I just remember my fasting bloods were normal.

I have to eat every 2.5 hours because my blood sugar is always dropping.
So I feel like I'm looking for the Holy Grail with RH because I can't seem to get it right.
But I'm going to try the baby steps suggestion and reduce my carbs and see how I get on.

My dogs appreciate the help LOL anything for longer walks!!

When you tested was it pre meal and two hours after first bite?
You know fasting tests are normal, it is now the meal spikes you.
The trigger for mine I somewhere between 7-8mmols that trigger the reaction. The overshoot of insulin that drives down your BG levels into hypo levels.
It does show the difference when having carbs and when you don't.
Best wishes

 

[Lisa246]

I think you are right about the fasting and the carbs that trigger my BG to go down as it is only when I eat that this happens.
I don't know what my trigger level is, so I will have to do some tests to see.
Today I am calculating how many carbs I actually eat in a day with the Carbs & Cals app and then from tomorrow I am going to try and reduce them.

Wish me luck, I am super nervous about this but as everyone on the forum has had such good results I am hopeful.
Thanks for all the advice and support

 

[Lamont D]

I think you are right about the fasting and the carbs that trigger my BG to go down as it is only when I eat that this happens.
I don't know what my trigger level is, so I will have to do some tests to see.
Today I am calculating how many carbs I actually eat in a day with the Carbs & Cals app and then from tomorrow I am going to try and reduce them.

Wish me luck, I am super nervous about this but as everyone on the forum has had such good results I am hopeful.
Thanks for all the advice and support

If you need advice on anything, please ask, with everything be kind to yourself.
don't rush this, your body will take time to adjust to the low carb levels.
be patient and persevere with it, you will notice the difference.

Best wishes.

 

[Lisa246]

Thanks for your kind words and support.
I will do it slowly because I'm worried I'll crash or get carb flu which they say just drinking more water and adding more salt to your diet will help this, hopefully!

Thanks Lisa

 

[Suzy D]

Hi,

I have been having some issues with exercise as well. I have had RH for about 8 years now and it seems to have gotten worse over the years no matter how strict my diet gets. I would like to be able to go walking with my dogs more, but most days I am worried and high anxiety which gets the better of me or if I do go I would say generally I always suffer from low blood sugar. I can't seem to walk longer than between 10 to 20 mins.

I have just recently downloaded the Carbs & Cals app so that I can try to lower my carb intake to 130g per day to see if that helps. I wanted to go Keto but I am scared of doing that so I thought I would try this first.

I guess I just feel really restricted and wish I could exercise more. I'm always looking for the magic food formula that will enable me to do this.

Any suggestions??

Thanks Lisa

Hi Lisa,

Sorry to hear that your RH seems to be getting worse. I think using the Carbs and Cals app for everything you eat for at least four weeks plus lowering your carb intake to 130g (and low GI carbs at that) is definitely worth trying. And checking with a glucose monitor as well so that you know what is happening.

Here's what I have learnt about my RH in the three months since being diagnosed (yours may be different but what do other people say? Does any of this sound familiar?).

My nutritionist has me eating 120-130 g of carbs per day, around 30 g per meal/snack ie snacks around 15. I have three meals and 1-2 snacks per day. Lots of protein. Eat the veg first (lots, I often munch red pepper, cucumber, raw carrots if it's snack time), then the protein, then the carb. Low GI carb. Sometimes I have protein shakes for snacks and I make them myself, from pea protein or hemp protein powder plus fresh berries plus a slice of seeded gf bread after, or similar.

Exercise: When I exercise straight after eating, blood sugar is likely to plummet. My stamina for exercise is best about 45 mins to an hour after eating. I can then walk in up to 40 minute bursts. Definitely have to sit down on a bench for at least 15 minutes, maybe have a snackette, then I can walk some more. I am up to 11,000 steps per day, but never in one go: more like in three to four walks. Table tennis is good because it's done in quick bursts, then sit down for a bit. Swimming: I haven't managed more than 20 minutes of front crawl but am working on it.

My insulin response seems to be at its most trigger happy in the morning and more relaxed in the evening (but maybe that's because I don't exercise much in the evenings). I can get away with slightly more carbs in the evening than in the morning.

Positive side effect: through eating in the above way, I have no sugar cravings!! And so am doing my body some good generally but effortlessly avoiding cakes, chocs, sweets, ice creams and biscuits. How cool is that?

What have other people learnt/noticed that works for them?

Hope you can extend your dog walks, Lisa! Let us know!

Suzy

 

[Lisa246]

Hi Suzy,

Sorry to hear that you have just been diagnosed with RH. It's a tough one, but it sounds like you are doing really well and have a really good nutritionist. Mine is a bit vague on details and just give me general rules to follow. It also sounds like you are doing really well with your exercise which is super good for you.

I did the Carb & Calls app yesterday and it seems like I am actually eating way less carbs than I thought. I eat between 100g and 110g. I really thought it was about 200g. I tried a carb free super that went really well and my blood glucose level stayed low but stable. 5.3mmol. But this morning when I tried a carb free breakfast within an hour and a half I was at 4.3 and getting symptoms. So ended up having a small carb, protein and fat meal to bring it up and I now feel better some hours later. Maybe it's the metformin?? I'm not sure why it would be okay at night but not first thing in the morning.

I'm glad you aren't feeling any sugar cravings any longer. If I feel the need for something sweet I will eat a small piece of 70% chocolate. Seems to do the trick.

I have to be honest I always eat the carb 1st then the protein and then the veg but will try it the way you suggested. You never know, it may help.

Thanks for all your advice and help,

Lisa

 

[Lamont D]

Hi @Lisa246
A hypo for reactive hypoglycaemia is usually below 3.5mmols. So your 4.3 is a good low level.
The symptoms can act like an alarm, especially if you know which ones are for getting near hypo levels.And yes a few carbs to nudge it up. Not too many mind you. As you don't want to trigger it again.
You have to remember you are still quite new at this and your body is adapting. It may, in the future, not need a nudge. As the norm will be in normal levels.
I prefer a higher % chocolate, 90% , I have tried the 100% but no!
Best wishes.

 

[Suzy D]

Hi Suzy,

Sorry to hear that you have just been diagnosed with RH. It's a tough one, but it sounds like you are doing really well and have a really good nutritionist. Mine is a bit vague on details and just give me general rules to follow. It also sounds like you are doing really well with your exercise which is super good for you.

I did the Carb & Calls app yesterday and it seems like I am actually eating way less carbs than I thought. I eat between 100g and 110g. I really thought it was about 200g. I tried a carb free super that went really well and my blood glucose level stayed low but stable. 5.3mmol. But this morning when I tried a carb free breakfast within an hour and a half I was at 4.3 and getting symptoms. So ended up having a small carb, protein and fat meal to bring it up and I now feel better some hours later. Maybe it's the metformin?? I'm not sure why it would be okay at night but not first thing in the morning.

I'm glad you aren't feeling any sugar cravings any longer. If I feel the need for something sweet I will eat a small piece of 70% chocolate. Seems to do the trick.

I have to be honest I always eat the carb 1st then the protein and then the veg but will try it the way you suggested. You never know, it may help.

Thanks for all your advice and help,

Lisa

Thank you, Lisa!

My understanding is that we do need carbs, just not many. And we need to smuggle them in while the stomach is already busy - at least that seems to work (often, not always) for me. Hence the fibre (vegetables) first, then protein and fat, then the carbs piggybacking last. I almost have to whistle innocently while having the carbs so that my pancreas doesn't go all drama queen : )

Why might the same meal be ok at night but not first thing in the morning: well my insulin is definitely more trigger happy in the morning, too. Maybe it's related to how much we move in the morning? More movement, more calories being burnt, faster metabolism. I don't know anything about metformin I'm afraid.

Sounds like you are on the right track by looking at what effect it has when you make a change. I write it down, because there are so many variables and it gets confusing – a few days later, and I might not remember what worked so well last Friday.

Good luck with everything, it's nice to know there are others out there having to be their own experimental scientist!

Suzy

 

[Lisa246]

Hi Suzy,

I like that analogy LOL made me laugh, that our pancreas are drama queens!! I always think it behaves like people who have asthma, but with carbs.
I have tried the carb last and so far so good and I think your right about mornings my pancreas is definitely more trigger happy in the morning. Plus I can always tell after breakfast what kind of day I am going to have, good or bad whereas at night I always feel more relaxed. Nighttimes just feel easier.

I'll do the food diary thing because your right remembering what you ate and when 3 days a go it hard.

I wish there was more research on RH or real medication. They make it sound so easy "just change your diet and all will be well" but it's not quite like that unfortunately.

Good luck to you too, sounds like you are doing really well. I was a bit of a mess when I first found out and didn't get to grips with my diet for a long time. Took me ages and lots of fails. l still feel like I'm not 100% right because I still have a lot of symptoms and limitations.

Good luck Lisa

 

[Ashintheuk]

Good to see there is a section for Reactive Hypoglycaemia here. There seems to be a lot of women dealing with it (I'm not)
It's my understanding that the diabetic drugs I was put on after misiagnosis has damaged my background insulin production to the point I've been on insulin for the last 6 year... whilst still getting reactive episodes on exercise

 

[Lisa246]

Hi Ashintheuk,

What diabetic drugs were you on? Must be terrible to have RH and have to use insulin. Do you regulate your diet. I am on 1000mg metformin and have RH but also have a very restrictive diet. Low carb. But it's still not 100% and have problems with exercise but also in general if I eat the wrong thing or am stressed or tired.

Lisa

​

 

[Ashintheuk]

Hi Ashintheuk,

What diabetic drugs were you on? Must be terrible to have RH and have to use insulin. Do you regulate your diet. I am on 1000mg metformin and have RH but also have a very restrictive diet. Low carb. But it's still not 100% and have problems with exercise but also in general if I eat the wrong thing or am stressed or tired.

Lisa

​

Ive been on Metformin for nearly 20 years. I elected to go back on it for the other properties it has, and am on 500mg as the lowest dose available. Before going onto Insulin I was on 2000mg Metformin, Dapagliflozin and Saxagliptin. Prior to that was on Gliclazide but didn't need the extra insulin production as I still can make my own with exercise.
It's a balancing act, and since exercising more, have dropped my insulin requirements from around 40u to 20u per day

 

[Lamont D]

Good to see there is a section for Reactive Hypoglycaemia here. There seems to be a lot of women dealing with it (I'm not)
It's my understanding that the diabetic drugs I was put on after misiagnosis has damaged my background insulin production to the point I've been on insulin for the last 6 year... whilst still getting reactive episodes on exerciseA

Hi @Ashintheuk ,
The reason behind the symptoms happen when exercising, is because of glucogenisis.
There could be other factors, but the natural way your body works is when your blood glucose levels and energy levels dip and you need more is when is commonly known as a liver dump (glucogenisis)
Because of the low insulin levels, the blood glucose spike from it, will trigger the reaction.
As with diet, how much and what you eat, how much you can do, and being as healthy as possible, you will need to find out how much you can do exercise wise.
Only walking and non strenuous chores is my limit.
If you have reactive hypoglycaemia, I would question the insulin and other diabetic meds. Especially if you are still non diabetic.
RH can be controlled with dietary restrictions, as RH is a food related condition.

Best wishes

shin

 

[Lamont D]

Ive been on Metformin for nearly 20 years. I elected to go back on it for the other properties it has, and am on 500mg as the lowest dose available. Before going onto Insulin I was on 2000mg Metformin, Dapagliflozin and Saxagliptin. Prior to that was on Gliclazide but didn't need the extra insulin production as I still can make my own with exercise.
It's a balancing act, and since exercising more, have dropped my insulin requirements from around 40u to 20u per day

If you weren't aware, metformin restricts the natural way your body gives you extra energy from a liver dump.
The reason it is prescribed is because of hyperglycaemia (high blood glucose levels). And to prevent additional glucose which is too high.

What tests have you had?
What dietary restrictions do you follow?

Insulin production is based on glucose derived from food, it has very little to do with exercise levels.

Best wishes.

 

[Ashintheuk]

If you weren't aware, metformin restricts the natural way your body gives you extra energy from a liver dump.
The reason it is prescribed is because of hyperglycaemia (high blood glucose levels). And to prevent additional glucose which is too high.
If you are in normal levels fasting. You should not need the metformin.
If you have RH, only the gliptin may help, but it won't stop the reaction.

What tests have you had?
What dietary restrictions do you follow?

Insulin production is based on glucose derived from food, it has very little to do with exercise levels.

Best wishes.

Hi, Mine isn't triggered by what I eat, I just go high when I do and need to inject or go for a walk to bring it down, so this was a walk last week. No food was consumed in the 4 hours prior to me starting the walk at 21.30 when I was seeing 9.8. 45 minutes later and walked 2 miles, and I'm at 3.8. no rapid injectables involved on that day. This was the result of my C-Peptide test a few years ago on a quiet day with no real exertion, and I'm falling into T1 territory with my own insulin production.
I suspect I'm falling into this category, but it's very deep and I'm not a biochemist, so looking at all avenues. Diabetes runs in my family, 3 siblings, father and his siblings struggled with it.... Always blamed on T2, but that's likely because it's so misunderstood.

https://www.sciencedirect.com/science/article/pii/S0002929707613445