Reactive hypo from hell

FeltCactus

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I'm a woman of 46, normal weight.
Since my teens, basically since working I get what seem to be sudden bouts of reactive hypoglycemia. Symptoms include everything you can expect, plus at times very low blood pressure, nausea and abdominal pain. Triggers seem to be being late for one of my endless meals, being active before breakfast and eating less carbs, more protein. A typical example for the first is sitting in a meeting that overruns and I'm missing my second breakfast. When I get up to walk back to my desk I get hit. Unfortunately, symptoms last into the evening and often return the next morning to subside again in the evening. A proper crash can last for up to 5 days.

So yesterday I experimented and had a breakfast composed only of protein and some fat instead of my usual high carbs with some protein. Just over an hour later the crash came on. Blood sugar dropped by 10mg/dl instead of going up by about 30 but recovered quickly again. I would not have been able to work until 7 in the evening if this was a working day. Btw, traveling in countries where I had only little carbs I felt miserable for the whole 2 weeks and never improved during that time. So now I know this can be brought on by eating too much protein and/or fat indeed.

Any other health issues? There's something I'm born with and will hopefully have investigated from next week. I can't fast for more than 2 hours as I just run out of energy when I'm active (that's not a crash as above). Thus if I stroll through a museum or work I just bonk after a max of two hours. I can run a max of 10km, but only very slow and my legs hurt the whole time. I can't walk up mountains without having a microbreak every 50-300 steps for the same. It feels like my body just doesn't know what to do with the oxygen, or how to oxidise fat for energy and I'm running purely on glycogen. Which of course is limited. If I exercise above the anaerobic threshold I might end up in hospital with a mild acid/base problem. Btw, I can only keep this up for a max of 12 minutes. Thus while I run for 6 years now I still can't do tempo runs. I feel that lactic acid might play a role, but I don't know whether it's too high or low. I never had a blood gas test, btw. Thus I have no idea what's going on.

Thus, anyone in the same boat or with any ideas?
 
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EllieM

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You're posting in the right forum and hopefully will get some help soon from the experts but just some thoughts from an ignorant T1.
Have you gone for a diagnosis from the medical professionals - eg insulinoma is treatable. There are a series of tests which the medical professionals can and should do (provided they are not distracted by covid?)
Reactive hypoglycemia is triggered by carbs, so the RHers avoid them. If that's not your trigger then hopefully the doctors can diagnose and help.

Good luck. As a T1 I get hypos and they are the worst. I cannot imagine the pain of getting endless hypos without being able to avoid them. Lots of virtual hugs.
 

JoKalsbeek

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I'm a woman of 46, normal weight.
Since my teens, basically since working I get what seem to be sudden bouts of reactive hypoglycemia. Symptoms include everything you can expect, plus at times very low blood pressure, nausea and abdominal pain. Triggers seem to be being late for one of my endless meals, being active before breakfast and eating less carbs, more protein. A typical example for the first is sitting in a meeting that overruns and I'm missing my second breakfast. When I get up to walk back to my desk I get hit. Unfortunately, symptoms last into the evening and often return the next morning to subside again in the evening. A proper crash can last for up to 5 days.

So yesterday I experimented and had a breakfast composed only of protein and some fat instead of my usual high carbs with some protein. Just over an hour later the crash came on. Blood sugar dropped by 10mg/dl instead of going up by about 30 but recovered quickly again. I would not have been able to work until 7 in the evening if this was a working day. Btw, traveling in countries where I had only little carbs I felt miserable for the whole 2 weeks and never improved during that time. So now I know this can be brought on by eating too much protein and/or fat indeed.

Any other health issues? There's something I'm born with and will hopefully have investigated from next week. I can't fast for more than 2 hours as I just run out of energy when I'm active (that's not a crash as above). Thus if I stroll through a museum or work I just bonk after a max of two hours. I can run a max of 10km, but only very slow and my legs hurt the whole time. I can't walk up mountains without having a microbreak every 50-300 steps for the same. It feels like my body just doesn't know what to do with the oxygen, or how to oxidise fat for energy and I'm running purely on glycogen. Which of course is limited. If I exercise above the anaerobic threshold I might end up in hospital with a mild acid/base problem. Btw, I can only keep this up for a max of 12 minutes. Thus while I run for 6 years now I still can't do tempo runs. I feel that lactic acid might play a role, but I don't know whether it's too high or low. I never had a blood gas test, btw. Thus I have no idea what's going on.

Thus, anyone in the same boat or with any ideas?
Nowhere near your boat, sorry. But.... Your hypo's don't sound especially reactive, to be honest.... RH is when you get an overshoot of insulin when you eat carbs. You get an overshoot no matter what you do, from the sound of it. Time to go back to the doc and request a referral to an endo, and get some research done into what your pancreas is up to. Bloodwork, ultrasound, the works. Something's off and this is affecting your quality of life to an extent where more tests are more than merited. Maybe a continuous glucose monitor for 2 weeks would help paint a clearer picture, especially if your doc's reluctant to help.

Good luck!
Jo
 

FeltCactus

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Nowhere near your boat, sorry. But.... Your hypo's don't sound especially reactive, to be honest.... RH is when you get an overshoot of insulin when you eat carbs. You get an overshoot no matter what you do, from the sound of it. Time to go back to the doc and request a referral to an endo, and get some research done into what your pancreas is up to. Bloodwork, ultrasound, the works. Something's off and this is affecting your quality of life to an extent where more tests are more than merited. Maybe a continuous glucose monitor for 2 weeks would help paint a clearer picture, especially if your doc's reluctant to help.

Good luck!
Jo

Hi Jo,
after having written this down I do started to think whether this actually is a reactive hypo myself. Yes, my glucose took a nose dive about 1 hour after eating this high protein/low carb breakfast. But I get the same crashes when I'm active before breakfast or one of my many meals is delayed. Maybe my glycogen stores are depleted in the morning and I don't have access to another energy source. Which would come back to my exercise and fasting resistence. Hmm... Yes, I think I will add this to the list of problems I'll discuss with a specialist next week.
 

FeltCactus

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You're posting in the right forum and hopefully will get some help soon from the experts but just some thoughts from an ignorant T1.
Have you gone for a diagnosis from the medical professionals - eg insulinoma is treatable. There are a series of tests which the medical professionals can and should do (provided they are not distracted by covid?)
Reactive hypoglycemia is triggered by carbs, so the RHers avoid them. If that's not your trigger then hopefully the doctors can diagnose and help.

Good luck. As a T1 I get hypos and they are the worst. I cannot imagine the pain of getting endless hypos without being able to avoid them. Lots of virtual hugs.

Hi Ellie,
nobody has ever looked into this. I've been living with it for at least 30 years. It probably started when I started working and could only eat at lunch time instead of constantly eating. Oh yes, I had glucose tests, but they were always normal. If there's only one very short dive about an hour after a meal then that's not surprising. I'll discuss it next week when I finally, FINALLY! have an appointment.
 

Brunneria

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Hi and welcome,

in your shoes I would be pushing for a proper investigation for this.

reading your post, a couple of speculations spring to mind.
Firstly, if your body has been running on fast acting carbs for the last few years (or decades), then the transition to keto, and running on fats/proteins would take weeks or months of consistent keto eating. Certainly far longer that 2 weeks, or 2 hours after a protein/fat breakfast. Digesting protein and fat takes time, several hours, and blood glucose can easily drop in the gap between eating a steak, or eggs and bacon, and the proteins being digested enough, and being converted into useable energy, which is when the blood glucose would start to rise again. If your body isn’t used to this slow rise and fall, and isn’t ‘fat adapted’ then your ‘bonk’ is not unusual, or unlikely. You may find it useful to read up on ‘carb flu’ (electrolytes) and ‘fat adaptation’ (where the body learns to switch smoothly from glucose burning to fat burning. A better solution might be to ease slowly into higher protein and fat, while easing slowly into reduced carb. For example, eggs and bacon with toast and butter. Then, over several weeks, reducing the toast portion while increasing the portion of eggs, bacon and butter. That would give your body time to learn to fat burn.

from what I have seen/read/experienced, people seem to experience difficulty in switching to keto directly in proportion to their previous ‘carb dependency’ - and from your description it sounds like your body is extremely dependent on constant carb top ups.

My other suggestion would be to see if you can get a referral to an endocrinologist who is willing to investigate properly. How much insulin you produce, what your current endless carb top ups are doing to your blood glucose over the entire day, what a 72 hour glucose tolerance test does to you... that sort of thing. You would be VERY lucky to find such an endo, but it would help to answer your questions. And it would eliminate (or reveal), other factors, such as an insulinoma.

good luck with it all. I know how utterly stressfully exhaustingly miserable it is on the hyper/hypo rollercoaster, with no healthcare support and food as your only DIY medication. It is a v depressing and lonely place to be.
 
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Lamont D

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Hi @FeltCactus
Welcome to our forum.

I have reactive hypoglycaemia and had all the tests.
I concur with the others, you definitely need those tests. Even if it isn't RH!

What you're describing is not as I know RH, one of the diagnostic tests is fasting for 72 hours under supervision. If you go hypo it is not RH. If you don't go hypo, it more than likely is RH. I fast all the time, I use intermittent fasting, I don't have breakfast, or anything until mid afternoon, then if I feel like it, have another meal about 6pm, then nothing after seven, so I know I'm not going to hypo during the night.

Did you get advised to eat so often?
I did when I was first seen by a dietician after diagnosis. That is the usual medical advice, it didn't work for me. That was before my fasting test. Since talking to my specialist, he advised a low carb diet and after finding answers on here, have been very low carb for years. No hypos!

Have you had any other conditions?
Could the meds from that be causing the symptoms?
Are you allergic or intolerant to certain foods, like I'm lactose intolerant.
Have you had your thyroid checked?
It could be a lot of conditions involving the metabolic system.

Finally, if you have a blood glucose monitor, a glucometer, do you test your fasting levels? Do you keep a record of your food in a food diary?
This was how I found out about what certain foods did to me. I was really surprised.
A specialist would be really interested in how you react after food.

I avoid carbs and sugars as much as possible.
My fasting levels are always normal.
My Hba1c levels are normal. 37. last blood test in October.
I only react if I eat carbs. I don't!

Stay safe and let us know how you get on.
 

Dr Snoddy

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A long shot. Could you be deficient in glucagon? This is the hormone that converts stored glycogen into glucose. An endocrinologist should investigate this.
 
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FeltCactus

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Hi all, thanks for your answers. I was not advised to eat so often. Basically I crash when I don't eat so often. It happens when I'm active before breakfast (a short 3km stroll to a specialist bakery), when I miss one of my many meals, when I eat too much protein and fat at the expense of carbs. I also crash when I walk for about 2 hours, or slowly run for 80 minutes. Yes, I guess I hit the wall from doing very little.

I did see a doctor yesterday, who for now did a lot of blood tests and then we discuss on. Turns out I had a mild lactic acidosis right at that moment. From cycling 2km to the hospital and sitting around for 2 hours. Hmpf. I sometimes do feel utterly miserable after mild exercise, exactly like I felt yesterday. So I guess that explains part of the problem. Or adds more confusion. Ketones were not measured in blood but in urine, and there weren't any. Thus that's fine. But yeah, high serum lactate with lowish capillary pH and bicarbonate. So something IS going on.

Dr. Snoddy: I don't think so. If you ask me, for me it feels like my body is running mostly on glycogen and not really on fatty acids. Or at a much higher anaerobic level at very low intensity as it should. Every relaxed mountain hike feels like a cooper test for me. 50-300 steps during which my lower legs hurt immediately and I'm breathing like crazy but still don't feel relaxed, short break and problems are immediately gone, walk on and the hurting legs and oxygen-depleted air is back. Only uphill, mind! For Ben Nevis I needed 5.5 hours to get up, and 2.5hrs down. Crazy!
 
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Lamont D

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I would wait for the results of your blood panel results to see what the next steps are.
I would definitely recommend googling lactic acidosis, it is a metabolic condition, which obviously is having an impact on your health. So if it is, you can be prepared.

Stay safe
 
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Loo2

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Hi Jo,
after having written this down I do started to think whether this actually is a reactive hypo myself. Yes, my glucose took a nose dive about 1 hour after eating this high protein/low carb breakfast. But I get the same crashes when I'm active before breakfast or one of my many meals is delayed. Maybe my glycogen stores are depleted in the morning and I don't have access to another energy source. Which would come back to my exercise and fasting resistence. Hmm... Yes, I think I will add this to the list of problems I'll discuss with a specialist next week.

He there,
I was diagnosed with non-diabetic hypoglycemia when I was 6years old and I am now 40years. I feel like you are experiencing the same kind of blood sugar symptoms as I experience and have tried to manage my whole life. With non-diabetic hypoglycemia you need to eat every couple of hours so u don't get too low and must stay away from glucose and fructose all together. When u wake in the morning you have to eat straight away and I'd advise not to exercise first thing in the morning as you wouldn't have fuelled your body enough to burn the energy. I found keto diet to work wonders with my hypoglycemia and didn't have one episode whilst I was on it for 9months, I know my limits with how far I can push myself to not eat or when exercising. You will need to find the right kinds of food that work well for you and stay away from foods that may trigger an episode and they may be either carbs or proteins that do this.
 
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FeltCactus

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He there,
I was diagnosed with non-diabetic hypoglycemia when I was 6years old and I am now 40years. I feel like you are experiencing the same kind of blood sugar symptoms as I experience and have tried to manage my whole life. With non-diabetic hypoglycemia you need to eat every couple of hours so u don't get too low and must stay away from glucose and fructose all together. When u wake in the morning you have to eat straight away and I'd advise not to exercise first thing in the morning as you wouldn't have fuelled your body enough to burn the energy. I found keto diet to work wonders with my hypoglycemia and didn't have one episode whilst I was on it for 9months, I know my limits with how far I can push myself to not eat or when exercising. You will need to find the right kinds of food that work well for you and stay away from foods that may trigger an episode and they may be either carbs or proteins that do this.

It's fatty and protein rich food that causes these symptoms for me, not carbs! I still don't understand why. I'm doing a lot better when I exercise regularly (in the evening! I can't even walk 3km before breakfast without crashing). Hey, I once was on a 3-week vacation where I got less carbs then I'm used to. Every single day I felt miserable, confused, weak, and had not even the energy to walk up 5 steps. One week after being home I felt normal again. I also don't get used to less carbs, usually 50ish %. Well, maybe after weeks and months, but 3 weeks did nothing for me. And I can't afford to not work and be sick for months on time to see if this would work, right?
 
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Brunneria

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He there,
I was diagnosed with non-diabetic hypoglycemia when I was 6years old and I am now 40years. I feel like you are experiencing the same kind of blood sugar symptoms as I experience and have tried to manage my whole life. With non-diabetic hypoglycemia you need to eat every couple of hours so u don't get too low and must stay away from glucose and fructose all together. When u wake in the morning you have to eat straight away and I'd advise not to exercise first thing in the morning as you wouldn't have fuelled your body enough to burn the energy. I found keto diet to work wonders with my hypoglycemia and didn't have one episode whilst I was on it for 9months, I know my limits with how far I can push myself to not eat or when exercising. You will need to find the right kinds of food that work well for you and stay away from foods that may trigger an episode and they may be either carbs or proteins that do this.

Brilliant to see someone else like me! :D

My RH started in childhood too, and persisted ever since.
Mine also responds fantastically to keto

there are differences too though - so long as I don’t eat carbs, I don’t need to eat regularly. In fact I naturally seem to gravitate to a pattern of 2 meals a day, plus a low carb nibble/snack. I hated the frequent eating, and much prefer eating a decent, satisfying meal and then forgetting about food for hours. Grazing just irritates me and makes me think about food all the time.

also, I have found that gluten is a major trigger. By avoiding any gluten, I have found that my carb tolerance increases a little - but I try not to push it.
 

FeltCactus

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Brilliant to see someone else like me! :D

My RH started in childhood too, and persisted ever since.
Mine also responds fantastically to keto

there are differences too though - so long as I don’t eat carbs, I don’t need to eat regularly. In fact I naturally seem to gravitate to a pattern of 2 meals a day, plus a low carb nibble/snack. I hated the frequent eating, and much prefer eating a decent, satisfying meal and then forgetting about food for hours. Grazing just irritates me and makes me think about food all the time.

also, I have found that gluten is a major trigger. By avoiding any gluten, I have found that my carb tolerance increases a little - but I try not to push it.


I rather have the feeling my body just doesn't get a lot of energy out of protein and fats. Thus yes, even eating a bit less carbs and a bit more of the other two makes me sick.
 
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HSSS

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Out of curiosity what are your normal bgl levels when you feel well and when you feel hypo?

You mentioned some numbers for the changes but not where in the scale these changes fall. Eg fall by 10 rise by 30 (mg I assume, and they are not huge changes, possibly even within meter tolerance depending on the actual level).
 

Brunneria

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I rather have the feeling my body just doesn't get a lot of energy out of protein and fats. Thus yes, even eating a bit less carbs and a bit more of the other two makes me sick.

Did you get anywhere with the further testing we were encouraging earlier in the thread.
As a couple of people suggested, your situation doesn’t really look like the RH cases we usually get on here.
Did they investigate?
 

FeltCactus

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Did you get anywhere with the further testing we were encouraging earlier in the thread.
As a couple of people suggested, your situation doesn’t really look like the RH cases we usually get on here.
Did they investigate?

No, unfortunately not. I got sick with possibly another problem, which was diagnosed as lactic acidosis that refused to go away for many days and other, very erratic problems that stayed for 6 weeks, for which the doctor made additional tests and in the end said he could not find out what's going on. And closed the file on everything :(
 
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