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Can someone help explain???

S

Shaj07

Member
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19
Hi I’m new!! I was diagnosed with Reactive Hypoglycemia around 2017-ish and I had never heard of such a thing. I got tested for the 4 or 5(?) hour glucose test. Before this I experienced extreme fatigue after eating to the point where I wanted to fall asleep ( and sometime did lol) after eating especially lunch. Pains near the liver/pancreas area ( still not sure about this) and food intolerances out of nowhere all occurred around the same time/year.

i don’t remember my exact reading of the glucose test but I was told it was normal at the lab facility then the next day the dr told me I had reactive hypoglycemia and basically I’ve been confused ever sense lol. Anyway I was told I didn’t need to monitor my sugar I just needed to eat 6 meals a day and I’ll be fine. (3 meals/ 3 snacks) eat protein.

Since then the pains have now gone away BUT I have some serious issues. I feel like I’m CRAVING carbs/sugar which of course starts a cycle of highs a lows. I have heart palpitations, sweating at night at times. I’m woken up at night literally every night between 2am-4am (not sure if that’s related). At times tremors/ miny seizures

after eating symptoms: extremely moody, fatigue/ tiredness, headaches, nausea, brain fog. Sometimes I’m really hungry then most nights I have no hunger at all after 6 or 7 pm

at this point im even having sysmptoms in “normal” readings. However I just bought a new meter to check ( still haven’t used yet

last year my fasting BG was over 100 (USA) which is high. Then this October I did labs and they noticed my heart rate was thru the roof. Now I had been feeling horrible that whole week so they did labs and my BG was 57!!! Which is extremely low. Felt like I was going to pass out.

im having a hard time following the diet because I’m craving foods I shouldn’t then If I get nauseous I’m not eating dinner some nights. Idk what to do! I know this is a horrible cycle cause I’ll wake up with symptoms.

I should note then even if I’m eating a meal with no or few carbs (or even just meat and a no carb veggie) I’ll still feel bad!! Idk what to do I’m desperate. I have a meeting with a dietician 12/31.
 
Reactive hypoglycaemia is a reaction to eating carbohydrate, when there is an over reaction and too much insulin is released, causing the blood glucose to fall too low.
Do you check your intake of carbohydrate from your meals?
Do you eat 6 times a day as advised? If you are eating any amount of carbs then that could be a total overload.
 


Thank you! And no I do not eat 6 times a day. I don’t even feel that hungry. I’m lucky if I’m doing 3/4 times a days tbh. I
 
Shaj07 said:
Thank you! And no I do not eat 6 times a day. I don’t even feel that hungry. I’m lucky if I’m doing 3/4 times a days tbh. I
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Hi @Shaj07 ,

Like @Resurgam said, the hypo's are an overreaction of your pancreas to the carbs you ingest. You mention feeling off "even after a meal with few or no carbs". A meal? ALL meals should be low to no carb from here on in. That would get you right out of the vicious cycle you're in. Little to no carbs in, a minute insulin response as a result, and no hypo's. Always. That would fix the cravings too. Would make everything loads better, actually. The diet for RH is the same as for T2's: Cut out as many carbs as you can. You don't have to eat 6 times a day. Once or twice is enough, if YOU feel that is enough. No snacks. (I have 2 meals a day, sometimes one. Perfectly fine.)

https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html is geared towards T2's, but basically applies to RH as well. It comes dow to controlling the carb input and insulin output.

You'll be okay.
Jo
 
Hi and welcome.

I am afraid that RH tends to gets worse over time, if we continue to eat in a way that overloads our bodies with more carbs than they can handle.

also, in my case, I found that my bg climbed through prediabetes, as my body craved carbs, and got more and more used to the higher bg they caused, I started having false hypos with all the symptoms of real hypos. This was because my body had got so used to raised bg, that even normal levels made it think I was dipping to a hypo and it would panic.

of course, I also got real hypos if I ate too many carbs, or did something like run up stairs, or get stressed on an empty stomach...

The irony is that I have eaten a low carb intake for almost all my adult life - because it made me feel so dreadful if I did eat carbs - but over time that wasn't enough. I now have to eat virtually no carbs at all, in order to feel well.

Most of the advice for RHers is ‘eat carbs 6 x a day’.
that was terrible advice for me.

there have been 2 things that have eliminated hypos for me:
1. Avoid carbs. No bread rice potato pasta sweet fruit juices and sugar etc etc.
No ‘small portions’ or ‘I can just get away with a little’ nonsense. It has to be NONE
2. Giving up gluten in any form, even in soy sauce or stock cubes. Turns out I have a food intolerance that triggers RH. Took me over 30 years to work that out!

Your experience is likely to be somewhat different, but I would urge you to try strict low carb for a few weeks, and see how you feel. There is a rather wobbly adjustment period - after all, your body has run on sugar fluctuations for years. Going cold turkey is a bit of a shock. But most of the RHers on here who have tried going very low carb (and stuck to it) seem to flourish on it.

have a look at www.Dietdoctor.com for suggestions on menus, including bread substitutes, snacks and dessert recipes.

Edited for a few typos
 
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I was diagnosed as RH in 2013, I had been struggling with so called healthy foods, mainly carbs! I had never heard of such a thing! I was diagnosed prediabetic, then in 2009, T2!
I had similar symptoms as yours, the more healthy carbs I had, I still felt awful.
I kept putting on weight, but my health was getting worse!

I had anxiety, anger, rage, hunger, craving, constant headache, blurred vision and a multiple list of other symptoms.

I was advised to eat a lot of small meals throughout the day, small meals with some complex carbs, but that did nothing but make it worse.

You see, RH is a reaction to food, mainly carbs and sugar.
Depending on how much your intolerance to these foods, is the severity in which your blood glucose levels bounce up and down all day. The severity of your symptoms, the worse it makes you feel.

The normal blood sugar levels is probably your fasting levels first thing in the morning or pre oral glucose tolerance test if you have fasted. This test is usually more than four hours, it records your blood glucose levels from pre test, every fifteen or thirty minutes, till either you go hypo or not! RH ers, if the diagnosis is correct will go hypo. This is because of an overshoot of insulin, when too much glucose, too quickly triggers the insulin and doesn't stop. Your c-peptide and insulin levels should have been taken during the eOGTT!

The necessity of avoiding the trigger and hypos, is avoiding those carbs.
Only by stopping the rollercoaster ride of fluctuating blood sugar levels, can you get your health back, it's not easy, it's a life changing experience.
You have to discover what foods you are intolerant to. I am lactose intolerant, wheat and grain intolerant, all sugars, starchy vegetables. So no bread, spuds, cheese and so on.

A food diary will be a great way of recording your blood sugar levels, it will show you what certain foods do to your blood sugar levels.

Until I realised that it was carbs that was causing the reaction, I was advised by my doctors, dietician and even my specialist endocrinologist, that it was necessary to eat carbs because it would effect my brain.
It was so wrong, that was because they really didn't understand the condition. There has been little or no research on the condition or how to treat it successfully over a long period of time. Most doctors, dieticians have never heard of RH!

There has already been some great suggestions already posted, the reactive hypoglycaemia forum is got some great information about how you can gain some control, once you have control, the symptoms ease, the hypos stop.

It will take time, there is no cure, no magic pill, it's all about food!

Do read about a low carb diet, fats and of course protein.
I have stopped having hypos, I got my life back because of very low carb dietary changes. No symptoms, great energy levels and am fit and healthy.

Best wishes
 
Great answers here and so much personal experience. What a valuable resource this forum is (have I mentioned this before????!!!!).

I'm such a newbie, but it is interesting how my experience parallels others here. I was diagnosed pre-diabetic in Jan 2018. Got a continuous glucose monitor a month ago, and that's when I learned I have reactive hypoglycemia.

I wanted to highlight a few shared symptoms I have had that the OP also mentioned:
*fatigue and headache after meals (high glucose/high insulin - one or both can cause this although I read different things. I think really it's not well established whether the sugar or the insulin or the combo is the source of the fatigue.)
*strange pains in the abdomen
*palpitations (most likely when your blood sugar was low, your adrenaline kicked in to raise it)
*nausea - so frustrating! I get nauseated when I am hungry, and ALSO after eating!
(update on this - I have begun pre-emptively having an Immodium or a Pepto-Bismol tablet before bed on nights the nausea occurs.... personally I think this is gastroparesis). Seems to be really helping me avoid being up sick during the night, but perhaps it's just coincidence.

Transitioning to low-carb can be especially hard for some people. Remember to include lots of salt. Increasing my salt (even drinking a glass of salty warm water, if you can believe it) has been the biggest help as I adjusted. Bone broth is better, but I don't always have it when I get light-headed or headachy.

Good luck.
 
RH can have a variety of different symptoms depending on the patient, some are the same, some not, I don't get the nausea, but I get most of the others.
The worst symptoms are the ones that effect your brain, typically brain fog, memory, forgetfulness, lethargy, tiredness, anger, rage, anxiety, depression, the constant headache behind the eyes, and of course constant hunger, craving, wanting to eat the fridge and cupboards! On top of this were what happens during the night, I would wake up and couldn't fall asleep again, whether it was insomnia or not, I suffered from this, it didn't help with trying to get through the next day. My other symptoms were terrible repetitive dreams. Not so much as nightmares, but different dreams repeated. These were in Technicolor, vivid, realistic, so real that they became more than that, dreams that were memorable experience and have stayed with me more than my daily life was back then.! They would usually wake me, sweating, breathing heavily, in pain, and could find myself on the floor.
But again, these symptoms effect many endocrine conditions, it is due to how fast the blood sugar levels would quickly spike and drop just as quickly. The rollercoaster ride of fluctuating blood levels will cause most of these symptoms and going hypo can be dangerous!
Have you ever found yourself, losing hours during the day? Found yourself somewhere that you shouldn't be? Lost and bewildered?
Hypos can do this!
The palpitations and nausea are usually when you are going towards hypo levels.
Though everyone is different!

You do have to be careful with medication @Auto E , because of the way they are made, same with antibiotics, I always have to have my meds lactose and sugar free.
Most tablets have lactose in them!
The worst ones are cold and flu meds, tons of sugar in them, I would recommend only taking paracetamol, first thing my endocrinologist told me about meds.

If you are still getting hypos, then treating them is important, we can't treat hypos like T1s or T2s, because of the rebound effect of having too much glucose, it would result in more hypos! If I knew that my levels were going up, or going too low, I would take a reading, I would eat something as zero carb as possible, I would test again, I would go for a walk for about fifteen minutes, test again, eat a very low carb meal, test again. This should see you okay, walking always helps me, to control my levels.

Hope this helps.

Best wishes
 
So if I’m having symptoms but when I check I’m not showing a low reading in BG, should I still treat it? Or just check sugar again in 15-30 min?
 
Shaj07 said:
So if I’m having symptoms but when I check I’m not showing a low reading in BG, should I still treat it? Or just check sugar again in 15-30 min?
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You could be feeling a rise in blood glucose, if you are developing a sensitivity to blood glucose levels out of normal levels, maybe this is what you are getting.
Keep having a bite or two low carb, every half hour, go for a walk, then check again.

You don't want to over treat the symptoms!
 
Lamont D said:
You could be feeling a rise in blood glucose, if you are developing a sensitivity to blood glucose levels out of normal levels, maybe this is what you are getting.
You don't want to over treat the symptoms!
Click to expand...

What does this mean. I’m sorry I really don’t know much about RH. When I was “diagnosed” I was first told my sugar was fine, then told I had RH. I was told carbs were fine just eat 6 times a day, Then I was told just make sure you’re eating breakfast, then cut all sugar, but carbs okay. I’m so confused! And frustrated
 

You have to differentiate the difference between blood glucose levels and sugar levels, despite probably meaning the same.
As having RH, your fasting blood glucose levels, your Hba1c levels should be in normal range, between 3.5 and 6mmols. Most tests are done from fasting.
This will help when experimenting with food, seeing which foods you are intolerant to.
If you haven't got a blood glucose monitor, I would advise you to get one asap.
Along with a food diary, this is so important to get the control you need to stop the rollercoaster ride you will be having. You might be able to have a few carbs, but this will only slow down digestion and lower the spike, if you have more protein and fats with them. But if you have a similar reaction as I do, then carbs are to be avoided.
Straight after diagnosis, the need to eat frequently, is good advice during lowering your carbs intake, your body needs to adapt to a low carb diet, it's not easy, but it can be done. After a while, a few weeks you can stop eating so much, the better the control, the less food you will require. If you do it too quickly, the likelihood is you will be having unnecessary withdrawal symptoms. This will take a lot of will power to get there.
You have probably still too much insulin resistance, high insulin levels, it is the overshoot of insulin that is causing the symptoms. It is food that is causing your condition. It is a dietary problem.
After getting control, your insulin resistance, your level of insulin will go down.
Breakfast is not necessary, you can please yourself when you eat. If you fast long enough, your blood glucose levels will be in normal levels. As long as you eat very low carb, this way you can stay in normal levels without having hypos.
No carbs, no hypos! As simple as that!

You have to understand, that the medical advice is the norm from doctors, is because they don't understand the nature of RH, I have a lactose intolerance, would the docs expect me to drink milk?
I call RH, a condition that the patient is carb intolerant, how does it surprise you that they insist on us eating so called healthy carbs, when they are not to me and probably you!

The rebound effect.
If I have carbs, I trigger an insulin overshoot, which if I don't eat shortly after, I will go hypo! So I treat the hypo, with too much sugar or carbs. The result of too much glucose is, I again trigger an overshoot, then hypo, I treat it, triggering another overshoot. I have put myself on a rollercoaster ride of blood glucose sugar, up and down, this leads to the symptoms you have probably experienced.
So I don't over treat the hypo, I just eat enough to nudge my blood glucose levels into normal levels, test, eat a low carb meal, probably go for a walk, test again.
The trick is not to go hypo, by not having carbs!

Keep asking, keep the questions coming, it is frustrating and confusing.
I had to gain the knowledge, how to live without carbs.
It's not easy! But for my health sake, it's probably the best thing I've ever done!

Best wishes
 


I’ve never had an a1c test. This is going to sound weird but it seems every time I test myself my range is normal, even when feeling like **** however when the dr puts orders in for a lab- my sugar is always off! High and low. But everyday I feel horrible. Whether it’s stomach pains, from developing intolerances to foods I could once eat and now learning I can no longer eat, to feeling fatigued after each meal, nausea,, etc

thank you so much for the kinda words and the push to see this through. Question is it possible to have insulin resistance or hyper/hypo insulin and still show abnormal glucose reading on a personal monitor?
 

In my experience, I would have to say yes!
I became less ill, the less insulin resistant I became.
I think that you have worked out, the reasoning behind how RH works and you are going through the experimentation stage.
If you keep a record and see which foods you are intolerant to, the symptoms you are getting now, will ease.

Every time I test myself now, because of low carb, my levels are normal. My fasting levels are entrenched in normal levels. It is only food, carbs, sugar that causes the reactive part of the condition.

There are a few different types of Hypoglycaemia, RH is just one, and there is one, were Hypoglycaemia doesn't happen but everything else, symptoms etc, happens.
I don't believe we have come across anyone that has exactly the same symptoms, spike timing, when a hypo level is reached or how much insulin is delivered from an overshoot.
Knowledge is really important in getting to grips in how you can go about your life.

Keep asking

Best wishes
 
Okay I have another question. I just had an a1c test done today. Guessing I’ll get results on Monday. But if I have hypos won’t that not show up on the a1c??

I had an a1c test in 2016 with result of 5.1
2017 result of 5.2 granted I didn’t start feeling bad til months after that test was done and started having sugar issues.
 

HbA1cs give a rough average of your blood glucose over the last 2-3 months with more emphasis on the last few weeks. They don’t give any info on highs or lows, so hypos don’t show up.

The only way to test for a hypo is to test for it at the time, using a finger prick, a venous blood sample or a continuous glucose monitor reading.
 
Thank you Brunneria,
I think I said my question wrong. Okay so I know it doesn’t show highs or lows. But does having lows decrease the a1c percentage? Basically I’m saying can the a1c be wrong due to me having more lows than highs. And since it takes an average and I swing both high and low wouldn’t it just average those highs and lows basically making the a1c in the “normal” range? I don’t know if I’m making sense lol
 
Don’t worry. I get what you mean.



Someone with a constant bg of 7mmol/L will get an HbA1c of (approx) 6% or 42mmol/mol
Someone with a bg of 9mmol/L half the time, and 5mmol/L half the time will get an HbA1c of (approx) 6%
And someone with a bg of 9mmol/L some of the time, 5mmol/L some of the time, and regular hypos (below 4mmol/L) will get a result that is lower than 6%
The actual result will depend on amount of time spent at each level, but (as with everything) our bodies vary a bit, person to person, and personal glycation rates affect the final result.
 
Shaj07, it's pretty common for reactive hypoglycemia individuals to have a normal A1C (especially when they are young). Indeed, in some journal articles they just refer to it as a form of prediabetes. There are probably some spikes, as well as all those hypos, for many years before the Beta cells of the pancreas are damaged enough that actual prediabetes and then diabetes A1Cs show up. And I'm sure in a subset of these individuals, they never develop type II diabetes because their Beta cells are powerful and able to keep dividing to accommodate the increasing insulin needs.

As a plug for a good book - Sugar Nation by Jeff O'Connell - he devotes more time (one or two chapters at least) to reactive hypoglycemia than any other mainstream source I've found. It was super helpful as I tried to wrap my head around how reactive hypoglycemia ties in with the pathophysiology of type II diabetes.
 
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