Reactive Hyper Insulinism

[EffectOne]

Hello,

I am new to this forum. I decided to start a thread because I feel kinda alone when it comes to my dissease. I think it would be great to get to know other people wherever in the world they might be.

Let's jump into it.

37 years old from Belgium and used to be a heavy weight (bout 120 kg ) when I was 27. Then around the same age I decided to start doing sports and I succeeded to lose 20 and with the help of a dietist I managed to get my weight down till 87. Soon after I achieved that I have started to get a few weird symptoms, for an example, like I don't have a left arm , troubled sight and not able to focus. Cold feeling and tingling in the face accompanied with goosebumps on one side of my body. I didn't know why I had those and for a year or so I thought it might be overwork or stress.

Till one day I was at my sister's house and she told me that I looked pale even I felt well. Bout 15 minutes later I started to feel unwell and I wasn't able to eat something, I laid down in her sofa legs up and she called a doctor. The doctor came and decided to measure my glucose and told me that I was 54 mmoll. Not very sure what that meant he told me it was suffering a hypo and that I needed to eat.

I ate and 2 hours later I felt had again , then I felt into a viscious circle of eating and feeling bad after my meals . Laying in bed after a meal one day I decided to take an appointment with my doctor.

The same day I went the doc measured my glucose after my story and told me I have 70 mmoll. I had to go to a specialist who got me diagnosed with hyper insulinism.

Here I am nowadays 3 years later after my diagnose, I take metformin 850 2 times a day , when I have a bad moment my doc puts me on 3 a day.

I can barely practice sports but I have to , max 30 minutes of cardio bout 3 times a week. I suffer lack of energy during my work ( I am a team leader and postmaster ). Sometimes I feel drunk , sometimes I feel great. I suffer about 3 hypos a week , sometimes even after eating some fruit.

I have a few questions for people who suffer the same dissease.
What should I avoid ? , I have noticed that coffee triggers hypos for me , also coke cola light or zero. Sometimes an apple is not enoght or an orange doesn't relieve my hypo. So I eat two at once. This is heavy for me at times.

I lack people who suffer from the same dissease around me , someone to talk to and relieve my stress and anxiety that comes together with the dissease.

Is there anyone ? Please share your pain . I would like to know if the symptoms are the same , how you deal with it , how you changed your life.

 

[Safi]

Hi @EffectOne
We do have members with & a section for reactive hypoglycemia - I'll tag in @Brunneria to help get you started

 

[EffectOne]

Hi @EffectOne
We do have members with & a section for reactive hypoglycemia - I'll tag in @Brunneria to help get you started

Thx Safi !

 

[Safi]

I'll also tag in @Lamont D for you & link the Reactive Hypo forum in case you missed it https://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/

 

[Lamont D]

Hello,

I am new to this forum. I decided to start a thread because I feel kinda alone when it comes to my dissease. I think it would be great to get to know other people wherever in the world they might be.

Let's jump into it.

37 years old from Belgium and used to be a heavy weight (bout 120 kg ) when I was 27. Then around the same age I decided to start doing sports and I succeeded to lose 20 and with the help of a dietist I managed to get my weight down till 87. Soon after I achieved that I have started to get a few weird symptoms, for an example, like I don't have a left arm , troubled sight and not able to focus. Cold feeling and tingling in the face accompanied with goosebumps on one side of my body. I didn't know why I had those and for a year or so I thought it might be overwork or stress.

Till one day I was at my sister's house and she told me that I looked pale even I felt well. Bout 15 minutes later I started to feel unwell and I wasn't able to eat something, I laid down in her sofa legs up and she called a doctor. The doctor came and decided to measure my glucose and told me that I was 54 mmoll. Not very sure what that meant he told me it was suffering a hypo and that I needed to eat.

I ate and 2 hours later I felt had again , then I felt into a viscious circle of eating and feeling bad after my meals . Laying in bed after a meal one day I decided to take an appointment with my doctor.

The same day I went the doc measured my glucose after my story and told me I have 70 mmoll. I had to go to a specialist who got me diagnosed with hyper insulinism.

Here I am nowadays 3 years later after my diagnose, I take metformin 850 2 times a day , when I have a bad moment my doc puts me on 3 a day.

I can barely practice sports but I have to , max 30 minutes of cardio bout 3 times a week. I suffer lack of energy during my work ( I am a team leader and postmaster ). Sometimes I feel drunk , sometimes I feel great. I suffer about 3 hypos a week , sometimes even after eating some fruit.

I have a few questions for people who suffer the same dissease.
What should I avoid ? , I have noticed that coffee triggers hypos for me , also coke cola light or zero. Sometimes an apple is not enoght or an orange doesn't relieve my hypo. So I eat two at once. This is heavy for me at times.

I lack people who suffer from the same dissease around me , someone to talk to and relieve my stress and anxiety that comes together with the dissease.

Is there anyone ? Please share your pain . I would like to know if the symptoms are the same , how you deal with it , how you changed your life.

Hi and welcome to the forum.

I have a condition called Late Reactive Hypoglycaemia.
I believe you have a similar condition, but because of your history, you have continuous hyper insulin.
Did you gain the knowledge why you have this high insulin levels?
Ok, it is because of what you eat, this causes your pancreas, to create too much insulin at some stage in digestion, this overshoot, means your blood glucose levels drop into hypoglycaemia levels.
The symptoms happen because of the constant high insulin and the roller coaster of up and down of your blood sugar levels.
I can relate to your symptoms especially anxiety, craving carbs, eating too much and dietary intake that still was making me ill.
As I started with, it is what you eat, you have to discover which foods are causing the insulin. To do this, you need to experiment and test your blood sugar levels with a glucometer. I have no idea how you would get one in Belgium, but, if you can self fund, the monitor and test strips, you can start a food diary.
Eating the right balance of protein, fats and limited carbs will help to control the hypos, eating every three hours, small low carb meals, will offset the hypos.
Exercise is probably a big part of your routine.
In my experience, with this condition, too much strenuous exercise will cause glucose dumping from your liver. This is something you should try to avoid. Again because of the effects on your blood sugar level. I have found that gentle exercise, walking swimming, normal working in tidying your house should be enough to stabilise your blood sugar levels. Walking fifteen minutes after a meal, for fifteen minutes, greatly helps maintain stability of your blood sugar levels.
Stable blood sugar levels, throughout the day, will give you the control of your insulin levels.
A healthy low carb diet, the balance right for you is the best way to get your health back, to get rid of the symptoms.

How did you get diagnosed?
What tests did you have?
Do you have a specialist?

Please read our forum on reactive hypoglycaemia.
There is a lot of good information there.

Again welcome, you are not alone.
My insulin levels were very high before diagnosis. I have not had a hypo for four years now!
It can be done!

 

[EffectOne]

Hi and welcome to the forum.

I have a condition called Late Reactive Hypoglycaemia.
I believe you have a similar condition, but because of your history, you have continuous hyper insulin.
Did you gain the knowledge why you have this high insulin levels?
Ok, it is because of what you eat, this causes your pancreas, to create too much insulin at some stage in digestion, this overshoot, means your blood glucose levels drop into hypoglycaemia levels.
The symptoms happen because of the constant high insulin and the roller coaster of up and down of your blood sugar levels.
I can relate to your symptoms especially anxiety, craving carbs, eating too much and dietary intake that still was making me ill.
As I started with, it is what you eat, you have to discover which foods are causing the insulin. To do this, you need to experiment and test your blood sugar levels with a glucometer. I have no idea how you would get one in Belgium, but, if you can self fund, the monitor and test strips, you can start a food diary.
Eating the right balance of protein, fats and limited carbs will help to control the hypos, eating every three hours, small low carb meals, will offset the hypos.
Exercise is probably a big part of your routine.
In my experience, with this condition, too much strenuous exercise will cause glucose dumping from your liver. This is something you should try to avoid. Again because of the effects on your blood sugar level. I have found that gentle exercise, walking swimming, normal working in tidying your house should be enough to stabilise your blood sugar levels. Walking fifteen minutes after a meal, for fifteen minutes, greatly helps maintain stability of your blood sugar levels.
Stable blood sugar levels, throughout the day, will give you the control of your insulin levels.
A healthy low carb diet, the balance right for you is the best way to get your health back, to get rid of the symptoms.

How did you get diagnosed?
What tests did you have?
Do you have a specialist?

Please read our forum on reactive hypoglycaemia.
There is a lot of good information there.

Again welcome, you are not alone.
My insulin levels were very high before diagnosis. I have not had a hypo for four years now!
It can be done!

Hello Lamond,

Thx for the quick answer, you explained it better than my doctor. I went to 2 specialists. Because I wanted to know how I got this, I even got an MRI of my pancreas , I wanted to excluded cancer. My last specialist has entered me into a diabetic group . Thx to that I have a free glucose meter , needles and strips. I control regularly. It has improved lots thx to that, and I have a better control. Also it helps me exclude other diseases that haunts my head, feeling bad offtenly can make you think you have different diseases. This is the part where anxiety kicks in for me. It even raised my cortisol levels. I am still confused about the name of my dissease. Reactive hyper insulinmia and reactive hypo glycemia. Is that the same disease ?

 

[Lamont D]

I believe that hypoglycaemia will cover these conditions rather than definitive labels. Because of the complexity of the science and chemistry involved in the imbalance of hormones. We get differing symptoms according to what our brain is telling us.
Hypoglycaemia along with hyperglycaemia, high circulating insulin, hyperinsulinaemia, insulin resistance and of course intolerance and allergies to foods. So, I would say because it is individual, until it is a definitive diagnosis and couldn’t be classed as anything else, then hypoglycaemia covers a wide range of these types of endocrine condition.
We named our forum Rh, because there was at that time a few that had it and we had anted to put it out there to help those who like us struggled to get a doctor to understand why we were getting such difficulties with our bodies even though we were eating healthy. It wasn’t healthy for us.
We now have had so many responses .

Oh yeah, it is not a disease, it is a condition of the pancreas mainly, it is rare, because not many doctors have seen the condition and not trained to diagnose.
I was lucky enough to find my specialist, who has treated over a dozen in the north of England area.

How do you cope with the anxiety ?
I still get anxious at certain times when it kicks in.
You have to keep battling away and not let it bother you so much, you have good days and some bad days. I hate them, but when I was full of energy and the symptoms are not there, I go about my business and try to do the best I can. That is all anyone should expect of you. It is only your self that gives you the doubts, second guessing, not sure of what you have done is right.
Just do what you can, you are your own worst critic.
Try and be positive, asking for some stranger about your own anxiety is a great step forward.

Keep testing and use your food diary to help avoid those foods that are giving you those symptoms.

 

[EffectOne]

I believe that hypoglycaemia will cover these conditions rather than definitive labels. Because of the complexity of the science and chemistry involved in the imbalance of hormones. We get differing symptoms according to what our brain is telling us.
Hypoglycaemia along with hyperglycaemia, high circulating insulin, hyperinsulinaemia, insulin resistance and of course intolerance and allergies to foods. So, I would say because it is individual, until it is a definitive diagnosis and couldn’t be classed as anything else, then hypoglycaemia covers a wide range of these types of endocrine condition.
We named our forum Rh, because there was at that time a few that had it and we had anted to put it out there to help those who like us struggled to get a doctor to understand why we were getting such difficulties with our bodies even though we were eating healthy. It wasn’t healthy for us.
We now have had so many responses .

Oh yeah, it is not a disease, it is a condition of the pancreas mainly, it is rare, because not many doctors have seen the condition and not trained to diagnose.
I was lucky enough to find my specialist, who has treated over a dozen in the north of England area.

How do you cope with the anxiety ?
I still get anxious at certain times when it kicks in.
You have to keep battling away and not let it bother you so much, you have good days and some bad days. I hate them, but when I was full of energy and the symptoms are not there, I go about my business and try to do the best I can. That is all anyone should expect of you. It is only your self that gives you the doubts, second guessing, not sure of what you have done is right.
Just do what you can, you are your own worst critic.
Try and be positive, asking for some stranger about your own anxiety is a great step forward.

Keep testing and use your food diary to help avoid those foods that are giving you those symptoms.

I remember my anxious moments like it was yesterday.. I wake up in the morning getting ready for my work and the very moment I sit in my car my mind start rocking and the thought of having a hypo was so strong that I had to pull over after a 5 minute ride. I even controlled my glucose levels in between drives from and to work. And this is only a 20 minute ride. Although I ate and had milk before I leave.

Last year I took a plane for a 12 hour flight and I remember getting nervous right before boarding. Once boarded I felt my legs become cold and warm and my heart racing and again the thought of having a hypo took me over. I even warned the lady on my side that I might faint or something. Right before take off I already went 3 times out of my chair to the stewards asking for an apple and coke cola.
1 hour later I got food and it went better, I have never been so happy to land and I clapped my hands ...( I was the only one ).

Then I started to think this can't be it and it shouldn't rule my life like this , I talked to a dietist who was shocked by my story and she told me to deal with it by eating , that's it. You feel bad ? Anxious ? Having symptoms ? Take two slices of bread and have a glass of milk. And this helped me a lot . When i leave for work I always have some bread or fruit in my back pack. The idea of having this is for me helpful. It changed my thinking from OMG I am gonna die to ( ok.. slice of bread and screw it ) .

Took me 3 years of anxiety to finally talk about it to someone. I realised I wasn't such a strong person I thought I was. And that I shouldn't be ashamed to talk about it. I have fought through depression due to anxiety , I took magnesium pills and vitamins , I exaggerated on pills due to it.

Now it doesn't happen that much anymore. When I posted my first post here I was anxious because there is no one. I happy I can talk to you or anyone having the same dissorder.

For that thank you

 

[Lamont D]

I remember my anxious moments like it was yesterday.. I wake up in the morning getting ready for my work and the very moment I sit in my car my mind start rocking and the thought of having a hypo was so strong that I had to pull over after a 5 minute ride. I even controlled my glucose levels in between drives from and to work. And this is only a 20 minute ride. Although I ate and had milk before I leave.

Last year I took a plane for a 12 hour flight and I remember getting nervous right before boarding. Once boarded I felt my legs become cold and warm and my heart racing and again the thought of having a hypo took me over. I even warned the lady on my side that I might faint or something. Right before take off I already went 3 times out of my chair to the stewards asking for an apple and coke cola.
1 hour later I got food and it went better, I have never been so happy to land and I clapped my hands ...( I was the only one ).

Then I started to think this can't be it and it shouldn't rule my life like this , I talked to a dietist who was shocked by my story and she told me to deal with it by eating , that's it. You feel bad ? Anxious ? Having symptoms ? Take two slices of bread and have a glass of milk. And this helped me a lot . When i leave for work I always have some bread or fruit in my back pack. The idea of having this is for me helpful. It changed my thinking from OMG I am gonna die to ( ok.. slice of bread and screw it ) .

Took me 3 years of anxiety to finally talk about it to someone. I realised I wasn't such a strong person I thought I was. And that I shouldn't be ashamed to talk about it. I have fought through depression due to anxiety , I took magnesium pills and vitamins , I exaggerated on pills due to it.

Now it doesn't happen that much anymore. When I posted my first post here I was anxious because there is no one. I happy I can talk to you or anyone having the same dissorder.

For that thank you

And I praise your posting about your personal experiences.

Hi again,
I had a bad day yesterday, due to work stress and pressures, my anxiety was truly in all my emotions.
I once found myself, in a local shop, standing there with nothing in my basket, not knowing or remembering how or why and what I was supposed to be buying. I was literally in a trance. Still have not a clue how I got there or made it back home.

I hate the second guessing of deciding what to choose how I do things, every day stuff can be so debilitating when you can't decide, either because of not having the confidence or lacking the belief of ability. You are in that zone of indecision and doubt, on top of what others say or think about you. You want to impress and please your close family and friends, but afraid of upsetting them, not being what you expect to be, hoping to find that happy medium, to fit in, but be reserved and sometimes just be alone, and hide away from every day life. You are happy in your comfort place.
Mine is music and watching sport on television by myself.

It is so beneficial to find a true friend or partner, a member of the family, who you can really talk to about your fears and listen to you and help you through the bad times.
Talking and doing more is so important to your mental health.

Getting the confidence to tackle your condition, getting your blood glucose levels more in normal levels, will ease the symptoms of how your brain works because of the high insulin levels.

It did for me.

Best wishes