Reactive Hypoglycaemia Help! Really Struggling.

[Oh766]

Hello everyone. This is my first post on here, as a short-time stalker of the forum. I’m really struggling with what we believe to be RH. I had a mixed-meal test which didn’t show a hypo low enough to confirm the diagnosis (my BG was 3.6 and it has to be 3.3 I believe…). They’re now checking it’s nothing else but they gave me a libre 2 and I’ve been verifying the readings with finger pricks. Even if I don’t go low after everything I eat, I go back to 4 after an hour of eating, sometimes less. It definitely seems I have more insulin than I need! I constantly feel weak, tired, starving hungry and get a lot of headaches. I’m just wondering how people cope, as it’s not possible for me to always eat every 90mins as I’m having to do. I know some people find keto helpful but I don’t understand how I won’t just be hypo all the time if I have no carbs! I’m limiting high GI foods but it’s doing next to nothing. The extreme hunger and tiredness is horrible. Thank you so much and sorry for such a long post..

 

[Melgar]

Hello and welcome to the forum @Oh766 . I don't have RH, but wanted to welcome you. @Lamont D started the RH forum on the site. You might want to check out the RH posts under 'Forums'. He is very knowledgeable and he will be able to assist you with your questions.

 

[Melgar]

Sorry @Oh766 I just noticed you are already on the RH forum, my eyes are rubbish !

 

[catinahat]

but I don’t understand how I won’t just be hypo all the time if I have no carbs!

As I understand it carbs cause our blood sugar levels to rise, the higher blood sugar levels prompt our pancreas to release insulin to deal with the glucose.
With RH something goes out of whack with the insulin response and too much is produced causing blood sugar levels to fall too low.
So no or very little carbs = no major rise in blood glucose = no insulin released to deal with the higher levels so no resulting blood sugar crash.

 

[Lamont D]

Hello everyone. This is my first post on here, as a short-time stalker of the forum. I’m really struggling with what we believe to be RH. I had a mixed-meal test which didn’t show a hypo low enough to confirm the diagnosis (my BG was 3.6 and it has to be 3.3 I believe…). They’re now checking it’s nothing else but they gave me a libre 2 and I’ve been verifying the readings with finger pricks. Even if I don’t go low after everything I eat, I go back to 4 after an hour of eating, sometimes less. It definitely seems I have more insulin than I need! I constantly feel weak, tired, starving hungry and get a lot of headaches. I’m just wondering how people cope, as it’s not possible for me to always eat every 90mins as I’m having to do. I know some people find keto helpful but I don’t understand how I won’t just be hypo all the time if I have no carbs! I’m limiting high GI foods but it’s doing next to nothing. The extreme hunger and tiredness is horrible. Thank you so much and sorry for such a long post..

Hi and welcome to our forum.
And yes, it is so difficult if you do not understand the reason why you produce too much insulin, and the symptoms and 'reaction' is really awful.
Ok first of all, did the doctors do an hba1c blood panel tests?
How long was the mixed meal test?
3.6 could be a hypo for you. And my specialist endocrinologist said the level is usually 3.5, but some would say under 4 is a hypo. As with all hypoglycaemia conditions, and there is more types than RH, it is individual.
I hope an extended glucose tolerance test is the next step. And that should be around five hours.
That is why some doctors tell you to eat every three to four hours.
It is to stop you going low.
It doesn't stop the excess insulin.
It doesn't stop the spikes if you have too many carbs.
It won't stop the symptoms, side effects as you describe.
It won't help with overeating.
It won't help your bank account.
It won't help you worrying about what to eat six times a day.
It won't stop the overnight hypoglycaemia, if you have a carb filled late meal.

You have hopefully read some threads on our forum.
And if you have, in my experience, going very low carb will help you so much.
You will not, if it is RH, go hypo, without carbs.
Indeed I am an example of someone who avoids carbs as much as possible.
I found through doing a lot of experimenting, that carbs are unnecessary and are not as essential.
And, common with similar conditions, we tend to eat sparingly, as in intermittent fasting or something similar.

Bear in mind, that, after a lot of testing even low GI carbs will still trigger the reaction for me and others that have Hypoglycaemia.
I am from young, lactose intolerant.
My intolerance to any sugars is awful.
it is the same with carbs, which includes Wheat, grains, starchy veg, rice, etc.
This is why, my BG levels spike, with them.
I spike abnormally high.
My body reacts cos of this, by over production of insulin.
This drives my BG levels down, similar to a sugar crash, down into hypoglycaemia.
The symptoms you describe are atypical of RH. It is your body's way of telling you, that something is not right. You are not doing healthy eating for you.
You need a healthy diet for you, for you.
We all have different tastes etc.
And our intolerance levels are different and individual.
Keep asking.
I will try and help as much as I'm able.

Finally, the last definitive diagnostic test, is called a fasting test
This is because, if you go hypoglycaemic whilst fasting it is not RH.
If you don't go hypoglycaemic whilst fasting for more than three days, then it is RH.
So why would you keep eating all day, every day?
Every test is a test that is designed to eliminate other conditions, there is no diagnostic test for RH.

Best wishes.
And yes, I do long posts.

 

[Oh766]

Hi and welcome to our forum.
And yes, it is so difficult if you do not understand the reason why you produce too much insulin, and the symptoms and 'reaction' is really awful.
Ok first of all, did the doctors do an hba1c blood panel tests?
How long was the mixed meal test?
3.6 could be a hypo for you. And my specialist endocrinologist said the level is usually 3.5, but some would say under 4 is a hypo. As with all hypoglycaemia conditions, and there is more types than RH, it is individual.
I hope an extended glucose tolerance test is the next step. And that should be around five hours.
That is why some doctors tell you to eat every three to four hours.
It is to stop you going low.
It doesn't stop the excess insulin.
It doesn't stop the spikes if you have too many carbs.
It won't stop the symptoms, side effects as you describe.
It won't help with overeating.
It won't help your bank account.
It won't help you worrying about what to eat six times a day.
It won't stop the overnight hypoglycaemia, if you have a carb filled late meal.

You have hopefully read some threads on our forum.
And if you have, in my experience, going very low carb will help you so much.
You will not, if it is RH, go hypo, without carbs.
Indeed I am an example of someone who avoids carbs as much as possible.
I found through doing a lot of experimenting, that carbs are unnecessary and are not as essential.
And, common with similar conditions, we tend to eat sparingly, as in intermittent fasting or something similar.

Bear in mind, that, after a lot of testing even low GI carbs will still trigger the reaction for me and others that have Hypoglycaemia.
I am from young, lactose intolerant.
My intolerance to any sugars is awful.
it is the same with carbs, which includes Wheat, grains, starchy veg, rice, etc.
This is why, my BG levels spike, with them.
I spike abnormally high.
My body reacts cos of this, by over production of insulin.
This drives my BG levels down, similar to a sugar crash, down into hypoglycaemia.
The symptoms you describe are atypical of RH. It is your body's way of telling you, that something is not right. You are not doing healthy eating for you.
You need a healthy diet for you, for you.
We all have different tastes etc.
And our intolerance levels are different and individual.
Keep asking.
I will try and help as much as I'm able.

Finally, the last definitive diagnostic test, is called a fasting test
This is because, if you go hypoglycaemic whilst fasting it is not RH.
If you don't go hypoglycaemic whilst fasting for more than three days, then it is RH.
So why would you keep eating all day, every day?
Every test is a test that is designed to eliminate other conditions, there is no diagnostic test for RH.

Best wishes.
And yes, I do long posts.

Thank you so much @Lamont D ! I thought I replied but it doesn’t look like it saved so apologies if this comes up twice! I was just wondering what you meant by my symptoms being atypical - which ones? And when you say “why would you keep eating all day every day?” are you referring to people without RH who eat even though they’re not hypo? I’m a bit confused, sorry!

 

[Lamont D]

Typical symptoms of atypical are listed in the sticky at the top of the sub forum page.

Thank you so much @Lamont D ! I thought I replied but it doesn’t look like it saved so apologies if this comes up twice! I was just wondering what you meant by my symptoms being atypical - which ones? And when you say “why would you keep eating all day every day?” are you referring to people without RH who eat even though they’re not hypo? I’m a bit confused, sorry!

I went through a couple of times, the eat every three hours advice.
It is so difficult to maintain.
There are quite a few reasons not to.
The first is, it doesn't stop the reaction or the symptoms or the hypos.
The theories because the hypo start around 3 to 4 hours after eating. To prevent them happening. And to have the glucose for your brain (you don't!) Also, to have the fibre and roughage from grains (you don't, and they are not particularly healthy)
And I'm referring to hypoglycaemia. Though, even normal (who is?) Would struggle eating that much food every day!
I hope that helps.

 

[Oh766]

Another question, sorry people! Does anyone here get hot flashes when they’re spiking? I find often after eating I get boiling when it’s shooting up, then an hour or two later I’ll get boiling again when it’s crashing down. Also, could RH be the reason why I feel so awful all the time - no energy, wobbly, headaches. Even if my BG is okay, I feel like rubbish, usually if I’ve had a day with big spikes and crashes, even if I don’t actually go hypo. Is that a thing or am I weird (or both!)?

 

[Lamont D]

If I said this is why I described my pre diagnosis years, my hypo hell.

Another question, sorry people! Does anyone here get hot flashes when they’re spiking? I find often after eating I get boiling when it’s shooting up, then an hour or two later I’ll get boiling again when it’s crashing down. Also, could RH be the reason why I feel so awful all the time - no energy, wobbly, headaches. Even if my BG is okay, I feel like rubbish, usually if I’ve had a day with big spikes and crashes, even if I don’t actually go hypo. Is that a thing or am I weird (or both!)?

I have the back door open and Mrs L has the central heating on in the front room!
One of the reasons I use intermittent fasting, is so I know I won't go hypo till late afternoon, if I do!
This was logical cos of my hours of working at the time, so it wouldn't happen whilst at work.
And yes having RH is weird. I have been told this by numerous doctors.

As food is the trigger, if you have RH, then you are in normal levels waking or as it's called fasting levels, as you have not ate since the evening before, so at least between seven to eight or more hours fasting.
You eat early morning, say cereal??
You spike high an hour (ish) later, the symptoms start, the overshoot of insulin happens, then a sugar crash down a little later, say, two hours later, more symptoms. You eat again cos your hungry, or its lunch.
You spike again, you overshoot again, you crash again. You eat agr, you spike again, you overshoot again, you crash again. And so on throughout the day.
Because the abnormal spikes, the abnormal sugar crashes, gives you an abnormal symptoms and that is why it is bloody awful. A rollercoaster of BG levels, all day.
And if you are eating every three hours that is six high spikes and six crashes. Overeating. An abundance of insulin just not working properly.
It is an illogical approach, when not eating carbs, will prevent the whole process.
No carbs, no spikes, no overshoot of insulin, no hypos.
Control and knowing how your body reacts to food is important for our health.

The only other thing is it it's not hypoglycaemia, it could be something or a condition of your pancreas.
Keep battling to get the tests to get a true diagnosis.
Best wishes.
Keep asking.

 

[Oh766]

Thank you for the reassurance. What is considered a spike? I just feel awful constantly, and today according to my libre my level hasn’t been low, just quite spiky. But I feel like it’s low. Still undergoing tests because it does go low but even when it doesn’t I feel horrific. I’m at a loss really, getting tests but it takes so so long. The waiting is agony, I just want to be fixed!

 

[Lamont D]

A spike in BG terms is the apex of the rise in the levels, the highest point.
But it could be also used, to describe the rise as well.
For me, a spike is above prediabetic levels around 6- 7-8mmols, which would give me symptoms.

Thank you for the reassurance. What is considered a spike? I just feel awful constantly, and today according to my libre my level hasn’t been low, just quite spiky. But I feel like it’s low. Still undergoing tests because it does go low but even when it doesn’t I feel horrific. I’m at a loss really, getting tests but it takes so so long. The waiting is agony, I just want to be fixed!

But as always, it is individual, you might not get symptoms until 9 or 10mmols.
Hope that helps.
Let us know how you get on.

 

[Oh766]

Hi everyone, just an update to say I’m now being seen by a hospital that is experienced in RH. They don’t want to put me through a glucose tolerance test because based on my sugar levels from me testing we think it would just make me sick, and they’re confident enough with the data they have to diagnose me. I’m not 100% convinced because I do go hypo if I fast, however they think I should try changing my diet and seeing, which is fair. I felt listened to for the first time, and the doctor understood the low-carb treatment and understood how everyone is different. She was apologetic that it’s just trial and error and that unfortunately I’m not able to take acarbose/diazoxide etc. She gave me a libre and she’s lobbying to get them prescribed. I’m feeling much more positive but at the same time still a bit hopeless! Anyone got recipe/snack tips - I don’t eat meat except chicken and fish, and breakfast seems to be the worst time of day for me so I need a good one! Thanks so much, Oliver.

 

[ianf0ster]

I'm a Type 2 in remission but feel my experience of eating low/very low carb may be relevant here.
Breakfast should be no problem: Kippers (smoked fish), Cheese, or Eggs (boiled, fried, poached, scrambled or an omelet with mushrooms, herbs, cheese) all virtually zero carbs - just don't add bread!

Snacks are more difficult, I like many Type 2's try to eat full meals so as not to need a snack. At home snacks for me might be a few olives, Brazil nuts or a chunk of cheese. Both olives and nuts do have some carbs, but they may be low enough for you.

 

[Oh766]

I'm a Type 2 in remission but feel my experience of eating low/very low carb may be relevant here.
Breakfast should be no problem: Kippers (smoked fish), Cheese, or Eggs (boiled, fried, poached, scrambled or an omelet with mushrooms, herbs, cheese) all virtually zero carbs - just don't add bread!

Snacks are more difficult, I like many Type 2's try to eat full meals so as not to need a snack. At home snacks for me might be a few olives, Brazil nuts or a chunk of cheese. Both olives and nuts do have some carbs, but they may be low enough for you.

Thank you so much. I’m also struggling with extreme hunger so I’m needing to eat very often but not gaining weight (another mystery). Cheese and nuts are my go-tos at the moment too! That breakfast makes sense, I’ve tried eggs and avocado but it takes so long and I already get up really early! I’ll have to get up earlier, it’ll be worth it I’m sure.

 

[Lamont D]

When I was eating breakfast, I would have a couple of eggs or full fat Greek yoghurt with a few berries.
Omelette is good with cooked meat like ham or some variant.
If you are in a rush, boiled eggs kept in the fridge overnight. But depending on your tastes, other options are out there.
I'm so glad they never give you those meds, as from others they don't work cos of the science behind RH.
I'm also glad that getting a CGM, that will help you so much with meals and food. And discovering the foods that spike you. I would have thought that a supervised eOGTT, would have given your endo important information about how your reaction to glucose.
You say, that fasting causes hypos?
You must sleep, and that is fasting. I'm not certain you go hypo when sleeping. Unless you are and not aware of it. And if you don't eat it could be the symptoms of a sugar crash that is happening. Always test your BG levels if you think you are hypo.
I would believe, if you are having hypos while fasting, in my experience, and what my endocrinologist told me, that it might not be RH, but another pancreatic condition.
As long as they are still doing tests, you will get there.
Best wishes, keep asking.

 

[Oh766]

So I often wake up either in the night in the morning drenched in sweat - that combined with other things makes us think I go hypo during the night. I also have had a fasting BG of 3.2. The doctors seemed satisfied it was RH without doing further testing, they really didn’t think it was a good idea to do an OGTT or 72h fast as they’re convinced it’s RH. I would like more tests to be sure but to be honest if they think it’s RH, I’ll treat it like so with diet and if it doesn’t help, in 2 months at my next appointment we’ll think again. I’ve had so many tests for other things recently and I’m tested out. I didn’t have the energy to argue about testing if they’re sure of a diagnosis for now.

 

[Lamont D]

So I often wake up either in the night in the morning drenched in sweat - that combined with other things makes us think I go hypo during the night. I also have had a fasting BG of 3.2. The doctors seemed satisfied it was RH without doing further testing, they really didn’t think it was a good idea to do an OGTT or 72h fast as they’re convinced it’s RH. I would like more tests to be sure but to be honest if they think it’s RH, I’ll treat it like so with diet and if it doesn’t help, in 2 months at my next appointment we’ll think again. I’ve had so many tests for other things recently and I’m tested out. I didn’t have the energy to argue about testing if they’re sure of a diagnosis for now.

Just to let you know, I don't agree with their thinking!
However, having a CGM will be very useful in understanding it all.
You clearly are going low. And I do think you are over producing insulin. But I'm not certain that going hypo without having food, is what I have been told and experienced.
I have never had a fasting BG levels reading in hypo levels. And of course RH (unless T2 is in the mix) is non diabetic.
Even if you Google RH, it is food that causes the reaction. It was called post pandrial hypoglycaemia, cos of the hypo after (post) food, before getting the description of Reactive Hypoglycaemia, cos of the reaction post food.
And not being a single type of diagnosis as there are different types of hypoglycaemia.
So, if you had RH, you would not get fasting BG hypo levels, and not get hypos during the day unless you have eaten.
Unless, you are doing strenuous exercise or work. But that is not the reason for the overnight sweats and lows.
I do think that the information you gather and the information from the CGM, and understanding what is happening to you. I think you should ask for more tests.
Think I mentioned all diagnostic tests for RH eliminate other conditions until the final test is a 72 fasting test.
And only if you don't go hypo on this fast, it is RH.
Do you see what I'm saying?
I would gather so much information from reliable sources.
And keep a diary of what foods and readings you are getting.asking them for more tests. Because of the discrepancies, of the evidence from the results
I had a decade of telling doctors, that I had been misdiagnosed, you sometimes have to battle your way through it all. And it is so hard to find you are quite alone and not finding the answers from those who should know.

Is it alright if I PM you?

 

[Oh766]

Absolutely, I really appreciate your insight.