Reccently Diagnosed Reactive Hypoglycaemia

[StrawberryBerry]

I have recently been diagnosed with Reactive Hypoglycaemia(literally last week)


Although Reactive Hypoglycaemia isn’t diabetes, I fear that it maybe linked to diabetes/pre-diabetes for me in the unforeseen-able future,this worries me a lot as 5 family members have died from complications of diabetes(including my mother).


I have PCOS and was just given metformin in my early teens and was just told to “take it” without even having any full knowledge at the time that it was actually diabetes medication, I have been on and off metformin for years- I had no real clarification as to why- all I knew was it was something to do with my PCOS and insulin resistance (which still to this day I don’t really understand) my weight has fluctuated on and off with history of past eating disorders.


Now I’m in my early adulthood and this Reactive Hypoglycaemia has made my life a misery.

I have had to temporarily quit learning how to drive(I got so confused and sweaty and shakey this was before I even knew I had Reactive Hypoglycaemia and just thought I had anxiety),quit my job because of light headedness and confusion again I just put it down to anxiety and staring at a computer all day.

My muscles always ache, I feel sick all the time, I’m always hungry, I’ve gained 5 stone within a year and my concentration and ability to even deal with day to day activities has been a struggle. I know this all sounds very melodramatic and by no means am I undermining anyone else’s issues, just I’m quite scared because no ones really been able to give me insight on all of this and how to really manage it. I was just sent on my way and told that I have Reactive Hypoglycaemia and I just have to manage it with diet and exercise.

I am not taking metformin for one year now,as I think this is what is causing me to feel weak and ill however, I still feel weak,ill and horrible. I have tried every diet possible from Veganism, to no sugar,Low Carb,Paleo,Keto,Water Fasting,Intermittent Fasting... you name it I have probably tried it!


My Symptoms:

-Black Outs.

-Extreme fatigue.

-Muscle ache.

-Sweating without even doing any activity!my hair and face look like I came out of a shower!

-confusion is what scares me, precious co workers said I have an attitude problem or if I was drunk, I almost crashed whilst learning to drive- is this normal? Mood changes and feeling drunk and not being aware of it?

-Having to lay down after eating.

-Extreme Migraines and falling asleep after eating even if it is protein or fat.

-Binge eating sugary foods because I feel confused and disorientated and I feel like I can’t even function, which is then followed by feeling fantastic whilst getting my blood sugars up to then migraines and falling asleep afterwards within 2/3 hour time frame.

• I know this sounds really melodramatic but I’m really depressed, I literally cry everyday because I don’t know how to cure this because I feel defeated like I have tried everything, I’m at the end of my rope with this- I am unsure what diet I can do to just fix this and control it because I am listening to my body and all it tells me is “eat clean and eat healthy- Black out, pass out, sweaty,confused,always hungry,sore muscles,extreme fatigue,falling asleep after eating,inability to function throughout the day,binge eat sugar after passing out or feeling confused”
• I’m just fed up, I almost had a car accident because I got so confused(before I was diagnosed with Reactive Hypoglycaemia),I’ve blacked out and I’m failing my classes because I can’t even concentrate and I quit my job as well because of this stupid Reactive Hypoglycaemia...
• Can someone tell me if this is normal?, am I doomed for the rest of my life?, because I have had to deal with this for years and it just seems to be getting worse and to top it all off I have a belly that looks like I’m pregnant on my tiny little frame which won’t shift no matter how much I try. I really try to remain positive in all of this but is this all normal? Is there a cure? Maybe I have other underlying health issues but I am unsure I’m just losing my will to live.

Sorry for such a long post, and sounding melodramatic when I know people have it so much worse then I do. I am just extremely scared because I have no real guidance or family to ask about this situation what is going on with me.
I use to be really positive and happy all the time but with the headaches and blacking out and confusion it’s really taken a toll on my mental health as well. Basically it’s a “no one believed me for years, I was told it was all just in my head and now it’s developed to something worse and now I have a diagnosis I just don’t know how to fix or cure it I’m overweight, dieting and paranoid of food but then end up having to eat sugar because of this drink and confused feeling I have”

 

[Brunneria]

Hi and welcome @StrawberryBerry

Unfortunately, what you say is terribly familiar to some of us here, including the ‘go away and manage it by diet and exercise’. Also the uncontrollable weight gain, emotions of distress, fear and depression.

I encourage you to spend some time reading through past threads in the Reactive Hypoglycaemia section of the forum. You will see that you are most definitely NOT alone! And you will see that many people arrive here in similar states of confusion and distress.

Deep breath. Have a read.
See if there are some recommendations about diet and lifestyle you can adapt to.

My own story is simple; the lower carb I go, the better I feel. And I HAVE to avoid food intolerances (gluten is the biggie) to keep control of my blood glucose and RH.

If you are aching all day, that may be the insulin resistance. Very likely since you have pcos too. If you get the carbs low enough (and that may mean low indeed) both the carb cravings and the binge eating may well lift and disappear. They did for me. And they took the aching and the depression with them. I was also deficient in vitamin D3, and taking supplements of that made a big difference to my depression too.

Have a hug.
We really do know what you are going through.

 

[StrawberryBerry]

Hi and welcome @StrawberryBerry

Unfortunately, what you say is terribly familiar to some of us here, including the ‘go away and manage it by diet and exercise’. Also the uncontrollable weight gain, emotions of distress, fear and depression.

I encourage you to spend some time reading through past threads in the Reactive Hypoglycaemia section of the forum. You will see that you are most definitely NOT alone! And you will see that many people arrive here in similar states of confusion and distress.

Deep breath. Have a read.
See if there are some recommendations about diet and lifestyle you can adapt to.

My own story is simple; the lower carb I go, the better I feel. And I HAVE to avoid food intolerances (gluten is the biggie) to keep control of my blood glucose and RH.

If you are aching all day, that may be the insulin resistance. Very likely since you have pcos too. If you get the carbs low enough (and that may mean low indeed) both the carb cravings and the binge eating may well lift and disappear. They did for me. And they took the aching and the depression with them. I was also deficient in vitamin D3, and taking supplements of that made a big difference to my depression too.

Have a hug.
We really do know what you are going through.

Thankyou so much for this! And taking the time to answer.

‘Feeling not alone’ is something I really needed. Reading through some of peoples stories and I realise that I really am not alone and it is most definitely a trial and error process to see what can be find diet wise. I’m so shocked that there isn’t much answers or information on Reactive Hypoglycaemia considering it’s something that is potentially dangerous especially if the person is confused or blacks out.

I am trying to be positive and manage the symptoms best I can.

Stay Awesome x

 

[Emile_the_rat]

Can I ask how you were diagnosed? Because a GP should not set this diagnosis based on only symptoms alone. You have to take prolonged OGTT, and have blood sugar readings that indicate that you do have a hypoglycemic episode. Blood sugar under 4 mmol means hypo, and where I live a reading below 2.4 mmol qualify for a RH diagnosis. So my tip, if you haven’t done already, get a blood sugar monitor and check it when you feel odd or bad.

I feel familier with a lot of what you write. But there is also some things that make me question if hypoglycemia is the real problem. I can try to tell what I find odd, and what I feel. I know it is different from every person, but I don’t feel it harm to tell my experience

- You say no diets have helped. I find this a little bit strange as diet is the main key to control RH. For me it is much better controlled when eating healthy, even thought I am not good at it. I love food too much.

- For me, RH does not make me feel constantly sick and my muscles to ache all the time.

- Eating sugary food use to help on a hypo. Usually feel better after 15 minutes.

- Also I do not get sudden black outs when having a hypo, this sound more like a panic attack to me. Getting a full blown hypo with black out, or a hypoglycemic shock usually happens to diabetics that take insulin. If you get black out from a hypo, the only treatment are a glucagon pen, and a hypoglycemic black out needs medical help immediatly. Not getting medical help when blacking out from a hypo is lethal.

- Well I do not sweat more when RH, I can get cold sweats and start to shake when real low, but this is only when I get a bad hypo. Nothing I feel all the time.

- I do not feel sick. Most of the time I am at good health, even though hyper and hypos can be a struggle in day-to-day life.

- Also, I do not get migrain, but can feel headaches when blood sugar raise or fall too rapid.

There is some things that are quiet different from my experience, and what I learned from type 1 diabetics that have to struggle with hypos.

I can get unconentrated, feel disorientated, a little weak when getting a hypo. And if it gets worse I will feel cold sweats and shake a bit. And if it gets really bad I can feel that everything is blurry and problem with clear speak, at least been told.

I can’t say if you got the right diagnose, but I understand how it feel. But black outs are a serious problem and should be checked further if you still have them.

 

[Lamont D]

I have recently been diagnosed with Reactive Hypoglycaemia(literally last week)


Although Reactive Hypoglycaemia isn’t diabetes, I fear that it maybe linked to diabetes/pre-diabetes for me in the unforeseen-able future,this worries me a lot as 5 family members have died from complications of diabetes(including my mother).


I have PCOS and was just given metformin in my early teens and was just told to “take it” without even having any full knowledge at the time that it was actually diabetes medication, I have been on and off metformin for years- I had no real clarification as to why- all I knew was it was something to do with my PCOS and insulin resistance (which still to this day I don’t really understand) my weight has fluctuated on and off with history of past eating disorders.


Now I’m in my early adulthood and this Reactive Hypoglycaemia has made my life a misery.

I have had to temporarily quit learning how to drive(I got so confused and sweaty and shakey this was before I even knew I had Reactive Hypoglycaemia and just thought I had anxiety),quit my job because of light headedness and confusion again I just put it down to anxiety and staring at a computer all day.

My muscles always ache, I feel sick all the time, I’m always hungry, I’ve gained 5 stone within a year and my concentration and ability to even deal with day to day activities has been a struggle. I know this all sounds very melodramatic and by no means am I undermining anyone else’s issues, just I’m quite scared because no ones really been able to give me insight on all of this and how to really manage it. I was just sent on my way and told that I have Reactive Hypoglycaemia and I just have to manage it with diet and exercise.

I am not taking metformin for one year now,as I think this is what is causing me to feel weak and ill however, I still feel weak,ill and horrible. I have tried every diet possible from Veganism, to no sugar,Low Carb,Paleo,Keto,Water Fasting,Intermittent Fasting... you name it I have probably tried it!


My Symptoms:

-Black Outs.

-Extreme fatigue.

-Muscle ache.

-Sweating without even doing any activity!my hair and face look like I came out of a shower!

-confusion is what scares me, precious co workers said I have an attitude problem or if I was drunk, I almost crashed whilst learning to drive- is this normal? Mood changes and feeling drunk and not being aware of it?

-Having to lay down after eating.

-Extreme Migraines and falling asleep after eating even if it is protein or fat.

-Binge eating sugary foods because I feel confused and disorientated and I feel like I can’t even function, which is then followed by feeling fantastic whilst getting my blood sugars up to then migraines and falling asleep afterwards within 2/3 hour time frame.

• I know this sounds really melodramatic but I’m really depressed, I literally cry everyday because I don’t know how to cure this because I feel defeated like I have tried everything, I’m at the end of my rope with this- I am unsure what diet I can do to just fix this and control it because I am listening to my body and all it tells me is “eat clean and eat healthy- Black out, pass out, sweaty,confused,always hungry,sore muscles,extreme fatigue,falling asleep after eating,inability to function throughout the day,binge eat sugar after passing out or feeling confused”
• I’m just fed up, I almost had a car accident because I got so confused(before I was diagnosed with Reactive Hypoglycaemia),I’ve blacked out and I’m failing my classes because I can’t even concentrate and I quit my job as well because of this stupid Reactive Hypoglycaemia...
• Can someone tell me if this is normal?, am I doomed for the rest of my life?, because I have had to deal with this for years and it just seems to be getting worse and to top it all off I have a belly that looks like I’m pregnant on my tiny little frame which won’t shift no matter how much I try. I really try to remain positive in all of this but is this all normal? Is there a cure? Maybe I have other underlying health issues but I am unsure I’m just losing my will to live.

Sorry for such a long post, and sounding melodramatic when I know people have it so much worse then I do. I am just extremely scared because I have no real guidance or family to ask about this situation what is going on with me.
I use to be really positive and happy all the time but with the headaches and blacking out and confusion it’s really taken a toll on my mental health as well. Basically it’s a “no one believed me for years, I was told it was all just in my head and now it’s developed to something worse and now I have a diagnosis I just don’t know how to fix or cure it I’m overweight, dieting and paranoid of food but then end up having to eat sugar because of this drink and confused feeling I have”

Hi @StrawberryBerry , welcome to the forum.

You need to discover the reasons why you are feeling like this, RH is a controllable condition through diet and exercise and knowledge of how and why is so important.
If you have intolerance to foods, you have to know what they are.
How did you get diagnosed, because as my understanding of the condition, certain tests must be done to get a definitive diagnosis. These include an extended oral glucose tolerance test, followed by either a mixed meal or breakfast test, allergy tests, fasting tests and lots of blood work done, sent to labs to look for other conditions.
Only if these tests are done and other endocrine conditions or digestive disorders or pancreatic conditions or liver problems are eliminated.
I have RH, I control my condition by being in ketosis all the time. I would be as bad as you, if I didn't, I know what you are going through, I went through hell, I did all the diets, the only one that works for me, was very low carb diet, only eating food that is healthy for me.
You may have been told that you need certain foods, usually so called healthy foods, such as wholemeal bread, complex carbs and such like. These are the types of foods that trigger the insulin response, that causes the hypos, that causes the symptoms, that causes the hell you are going through.
If you have a glucometer, could you give us an example of your daily food and your reading from pre meal to one hour after and then second hour, possibly three hours. If you can go that long without eating.
Weight gain can be a part of the problem, that is why you are feeling tired, something your body cannot control is adding the pounds on, only by avoiding these foods and getting healthy will you get your life back.
There is no miracle, there is no cure, only what you put down your throat will make you healthy.

We are here to help, do read the RH forum and see what others have done and the success that very low carb will work, if you get your balance of foods right.

Give us an idea, what you have been told by your doctor.

Best wishes