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The Misery Of Reactive Hypoglycemia

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lozzinthespace

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I have had Reactive Hypoglycemia now for over 5 years and it is the most miserable and grim condition ever. There is no way to break free from the horrible condition, to sustain symptoms i have to have a very careful diet. I have to get up at 8.00am, cook eggs with cheese, anything else and i am having hypoglycemia symptoms after 1 hour. I have to carry flax seed with me incase of low blood sugar, for my lunch i have to have an egg salad and for tea, it has to be something high in protein, with few carbs. This is day in and day out, this is just terrible this condition.

I just want some freedom and be able to have a mars bar and coca cola like everyone else, life is so unfair. I cannot go to the cinema with friends and have any popcorn. I have no life, i am just living to eat and making sure i have enough protein, healthy fats and fiber in my diet. I mean what is the point of living if i have to continue this grim existence. I cannot even go abroad, as the meals on a flight would cause me to have hypoglycemia and the plane might have to make an emergency landing if i cannot control my symptoms, what a terrible life this is. I have so much sympathy to all you wonderful people who put up with this terrible condition, much love to you all, as it is the worst thing ever.

If having a new pancreas would stop this condition, i would have it, if anyone was kind enough to donate me a fully working pancreas. However it is not as simple as that, as having a new pancreas contains so many risks and it still may not cure the condition.

I am here to ask is there any vitamins, minerals, herbs or prescriptions that can give me at least some life. I mean is there anything that can help, i just want a night at the cinema with some popcorn, i used to love that. Why should i have to cut my time with friends due to this terrible condition. I mean what is life, all i could have to eat in the cinema is a boiled egg, what a life this is. Eating just to survive if anyone could help i would be grateful, i mean does anyone know how i can get funding for further tests or clinical trials on this condition, as i cannot go on like this? Not only does my diet cost me a fortune, it is the worst existence ever, i find myself on a sunny weekend, shutting the curtains and watching movies on my own with a boiled egg and lots of protein around me, is this all that there is to life with this condition?
 
Hi and welcome!

I get where you are coming from, because I agree that controlling RH with diet is a long, wearing experience, little understood, and very lonely.

But my own diet, social life and travel arrangements allow me a lot more freedom than you, while still achieving very tight control.
Is there a reason why you restrict your foods to the same things every day?
I’ve tried a range of different ways of eating with RH, but i have always eaten a range of proteins, veg, salad, fats, oils, colours, flavours and textures.
More recently I have adopted the strictest yet, and still find my foods varied and appetising.

As for the risk of hypos while travelling, the quickest fix is a gluco tab. Not ideal for an RHer, but it will stop the hypo dead.
A handful of nuts from the flight attendant will stabilise blood glucose afterwards. In flight meals are dire. I probably wouldn’t be eating them even if I could.

Last time I flew it was a 6 hr transatlantic flight. Going there, there were check in delays and no time to eat. So I fasted through the flight. No hypo, because my blood glucose was steady going in. Hungry, yes, but no hypers or hypos. The return journey I feasted on steak before the flight and didn’t need any in flight foods at all, since the slow release protein and fat kept blood glucose steady for hours.

And at the cinema... well... i have taken far more interesting things than popcorn, and made the popcorn eaters green with jealousy! Nowadays I think wasapeas, feta stuffed peppers and chorizo crisps would probably be on the menu...
 


I haven't been on a flight for yonks where nuts were on offer. These days, it seems to be mainly either a sort of Bombay mix (without nuts) or mini pretzels.

As you know, I don't have RH, but I usually do have a small pack of nuts in my bag, for emergency rations.
 

Thanks @DCUKMod
If it was gram flour Bombay Mix, then a small handful of it would be OK (for me) as a temp fix, especially as that stuff is deepfried (chickpea flour and fat => slower release than wheat flour), but pretzels would be a No Go.

And a bag of Bombay, nibbled over several hours, a crunchy ribbon thing at a time, could drip feed blood glucose nicely...
 
Antje77 said:
My apologies for going off topic, but I think I need to know everything about chorizo chips.
Click to expand...



Buy some sliced chorizo.
Lay a few slices between two sheets of kitchen paper.
Microwave until crisp.
In my micro that means 8 slices for 90 secs. ( your micro may vary)
Allow to cool and they crisp up brilliantly.
Enjoy.

Also works brilliantly with salami.

Edited to add
Also makes fab dippers into cream cheese or low carb dips like guacamole and fresh (unsweetened!) salsa.
 
Last edited:
lozzinthespace said:
I cannot even go abroad, as the meals on a flight would cause me to have hypoglycemia and the plane might have to make an emergency landing if i cannot control my symptoms, what a terrible life this is.
Click to expand...

I couldn't help laughing hard when I read your message. Not because it is funny but because I perfectly understand how gloomy life seems to be when you are dealing with RH. Been there, too (and sometimes still am).

Now, I would like to ask:

1.Who diagnosed you with reactive hypoglycemia, and what tests did you have?

2.How does flax seed help with low blood sugar?

3.And, you said: " I cannot even goabroad, as the meals on a flight would cause me to have hypoglycemia and the plane might have to make an emergency landing if i cannot control my symptoms, what a terrible life this is."

--->Like Brunneria said, glucose tablets will stop the hypo dead. Moreover, you can always take some food with you in your hand luggage.
So why would you not be able to go abroad?
 
Lozzinthespace, I get where you're coming from, and I think we'll all try to give you what tips we can to get you feeling a little bit better, but I need to state for the record that reactive hypoglycemia is *not*, in actual fact, the most miserable and grim condition ever. Good luck to you, and no offence intended!
 

I have had RH for...... a long time..... diagnosed 2013, got my RH in control by stabilising my blood glucose levels to normal levels and kept them there. I have been in ketosis for four years, my diet is varied and balanced. Plenty of protein, saturated fats and good vegetables for me.
Plenty of fried egg, gammon steaks, fish, ham, pork, mushrooms, tomatoes, curry,, soup, all home made, full fat yoghurt and small pieces of fruit. Plenty of others.

I have been where you are now, I called it my hypo hell.
It's awful!
I sympathise and empathise.
But, there are ways to do this, that you haven't thought of.
Do you eat small meals regularly, to offset the hypos?
Do you know fasting is really good for normalising blood glucose levels?
Do you have a glucometer, a food diary?
Do you know which foods that you are intolerant to?
What tests have you had?
Do you have an endocrinologist?
Are you aware that not eating can help you?

I believe you are that stage where your body is still producing too much insulin to what you are eating. You are constantly going hypo, going high, then low, classic hypoglycaemia.
You need a break, your body certainly does!

Eating carbs is what is making you ill.
If you want the science, I will explain but that is enough.
You want help, the medical advice you have received hasn't worked.
Maybe, what I suggest, won't either, but you do need to start avoiding those foods that makes you feel this way.

To finish, your post comes across very anxious and a bit down. This is another classic symptom of RH. So is hunger, craving food and of course many, many more.

Keep asking, you need the knowledge to find your way through this.

Best wishes.
 
Thank you for all your comments, i am very grateful.

I suppose my outlook with this condition is very negative, as i feel that it is restricting me doing things. I used to be very active and always socialising with my friends. I could have a coca cola and mars bar at 1pm and at 3pm i was fine, those were the days. People who can eat what they want at any time without any worry are free in the world, oh boy do i miss those days, they were the glory days.

I saw some kids eating some haribo coming home from high school and having a can of sprite, oh boy do i miss those days. I used to do that i thought, now i have to stay inside and have a boiled egg and some spring water. I think what is the world coming to, if i cannot even have a bag of haribo with my friends.

My question is with my diet, can i add in anything such as a vitamin or mineral or herb, that could help me slightly? I generally feel tired throughout the day and i wanted to know if any of you kind people know of anything or might take anything personally? I know there is alot of blogs online that state certain vitamins and herbs can help you with blood sugar stabilising, stopping fluctuations i thought it would be wise looking into.
 
Hi again.
It would be wrong for me to advise you to take any supplements unless you have had the tests to say you are deficient in your vitamins and such.
You have to experience and experiment what you like and your tastes.
I have found that finding which foods you are intolerant to is more important.

One of the most important thing is to eat fresh food, nothing that has been through a factory process. You can make all kinds of low carb meals from scratch.
 
Hi lozzinthespace and welcome.

I just wanted to say that I’ve been where you are so I can fully sympathise and empathise!

I’ve also now come out the other side and live a relatively full life. Yes my diet is restricted compared to those around me and sometimes this gets me down, but it has just become a new way of life. A healthier one!

I started by reducing my carbs (and being more picky about the ones I did eat - whole grains, slow release etc) and ate little and often. Once I felt in a better place, I reduced my carbs further and increased my fat and protein. I did lots of testing after meals to see what I could tolerate.

Once I started to feel better, I didn’t dare change anything for a while through fear of my hypo hell days returning! Over time I became more confident (and bored with the foods I was eating!) so I began experimenting. The internet is full of low carb recipes both savoury and sweet. Some are better than others, but I now have quite a collection of recipes that both me and my family love!

As for getting out. I always make sure I have a biscuit in case I go low and some nuts or a low carb nut bar with me. If we have a family day out, I’ll always make myself a salad to take in case I can’t find anything suitable. It’s a bit of a pain, but it’s just part of getting ready for the day.

In the early days, I stopped going out. Thought family days out were a thing of the past (I have two young children so I also felt bad for them as Mummy could no longer take them places), BUT with a bit extra planning and forward thinking you CAN live a normal (ish) life again and enjoy yourself!

I could be wrong, but you sound like a younger person? Please try to stay positive. You can have a fulfilling and happy life with RH.

All the best

Kaz
 
Hi there. I have just been reading this thread and totally understand where you are coming from. It is encouraging to see many folk have learnt to live a relatively normal life with RH? I must admit I am still struggling to find the right foods and activity level and some days I just don’t know what went wrong! But I do think looking at carb levels is important for most of us. I have found that I need to have some in the morning after the long fast overnight. Sometimes I eat a little every 1 - 11/2. Hr and by lunchtime can go a bit longer. If I don’t have enough carbs in a day it affects my sleep. I suggest a food diary and lots of experimentation, you can get to a better place, I know it’s hard especially when you might feel low, I get like that some afternoons and early mornings too!! Eating usually helps to lift my mood. I go to the cinema with a peanut butter sandwich and I would take my own homemade popcorn if I liked the stuff, it’s great fun to make in a see through lidded saucepan! I do hope you will start to feel brighter soon, remember you are not alone.
 
I'm so glad you have started the process of getting your brain to realise that it is what you eat has a dramatic effect on how you feel.
This condition is so individual and what foods we can process without the highs and lows, will be of great benefit to our health.
Keep experimenting and test, test, test, the food diary is so important in the early weeks.
Best wishes Rose.
 
 
Hi lozzinthespace, I have had hypoglycemia my whole life but just this past year it has increased to daily episodes 2-3 times a day , nothing I did helped except to have hard candy . So I was started on Metformen 2000mg daily in June last year which does have some horrible side effects but I decided anything would be better then no life . So I have to say this past year have been great only occasional low BG which was great to me however the hypoglycemia has returned and it now is with me constant most of the day . I called the Dr and asked if it could be the medication Metformen and I really didn't get an answer but to drop down to 1000 mg . I added more carbs with the new dosage but it didn't work so I went back to protein and small amounts of carbs and I'm finally doing better but like you it drops without warning . My heart goes out to you and I truly understand your dilemma . I have read selenium and Vit D are good . Good luck!
 
Hi @Gwennith and welcome to the forum.

So sorry to hear that you are still suffering because of the hypos.
I was diagnosed six years ago in 2013, and I was very ill and going hypo all the time.
My doctors and dsns and dieticians all told me that I still had to have a normal diet reducing my carbs and sugars, but it didn't work, I have tried all the diets and all but one worked, but it was my preferred method of how much protein and vegetables I could eat without going hypo. The low carb higher fat diet, works for me. But you have to get the balance right.
Everyone who has Hypoglycaemia is slightly different but usually it is the glucose derived from carbs and sugars that causes the horrible symptoms.
I would ask you to read the threads on the reactive hypoglycaemia forum before I start giving you more advice. You will discover that having RH is controllable. I have had no hypos since my last extended OGTT, because I avoid the food that causes the symptoms.
I stopped taking metformin, as I was having the tests for a diagnosis, unless you don't get the side effects, then I can see no benefit especially if it is really upsetting your digestive system. Unless you have other conditions which you do need metformin.
Ask your GP!

Best wishes
 
Hi Lamont , Thanks for your reply . In addition to RH I have IR so I'm sure that adds to the confusion in my diet . I
have never been a fat eater and lean towards low carb high protein with veggies but I feel low bg coming before and after meals . If I stay home I can manage it but up until a few weeks ago I walked 6-7 miles a day and now I can't go out . I loved Metformen I thought it was a great solution until it wasn't anymore (and after a while my stomach was ok) , I was hoping by going off it half dose I would return to feeling safe again . I'm and RN so I have researched this and my mom was a bad type I diabetic so I knew a few things about it . I feel my Endocrinologist has been smart and knowledgeable but I just think this has to many gray areas unfortunately . I did start ready the post but will complete them , thanks
 
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