Coping with this miserable existence

[Cry18]

How do you all cope with the miserable existence that comes with reactive hypoglycaemia?

I was diagnosed with non diabetic RH coming up to three years ago, and I just feel miserable with it. I have friends with prediabetes and diabetes who can eat whatever they like thanks to medication, whereas metformin did nothing for me and the only thing that works is a restrictive diet.

I can’t enjoy normal things with my friends or family as I have to watch what I eat - going to the pub all I can drink is water. It’s just so miserable. I’m tired ALL of the time, I can sleep for nine hours and wake up with my eyes burning I feel so fatigued. I feel bad for my husband as it must be miserable for him as well with us not being able to do many normal things.

How do you all cope? Do you ever cheat and eat something you shouldn’t on the odd occasion just to get some joy out of life?

 

[Cry18]

Also to add - I met with an endo when I was diagnosed who was little help and basically said it’s nothing to worry about as it’s not diabetes. However I know high levels of insulin can cause health problems - including pancreatic cancer - so I just feel constantly anxious that I’ll end up with that. I can’t help feeling so angry and upset I have to live with this for the rest of my life when other people get to live so normally. I know people have worse things of course, but I just feel so depressed about it knowing there’s no cure other than a totally restrictive diet.

 

[bulkbiker]

Which "restrictive diet" are you currently following? Does it help to keep your condition under control?

AS for your friends

who can eat whatever they like thanks to medication

There will likely come a time for them when the medication stops working so effectively and they have to move onto ever stronger meds so maybe don't be quite so envious..

 

[Cry18]

Low carb / sugar diet, I stick to complex carbs. I just want to be able to go out for dinner and eat normal foods without worrying.

 

[Cry18]

And I have no idea if it does - I don’t have a glucose monitor, I know when I’ve had a piece of cake or something I’ll get symptoms which is just mainly intense fatigue but anything else I don’t get symptoms I just feel constantly tired. Numerous blood tests rule anything else out.

 

[bulkbiker]

And I have no idea if it does - I don’t have a glucose monitor, I know when I’ve had a piece of cake or something I’ll get symptoms which is just mainly intense fatigue but anything else I don’t get symptoms I just feel constantly tired. Numerous blood tests rule anything else out.

Could you not get a monitor and check your levels..

Not sure that complex carbs will help all that much.. you could try an ultra low carb diet which might give more relief (although may indeed appear slightly more restrictive) but worth it if you feel better?

 

[Resurgam]

I suppose that some might consider my type 2 controlling diet restrictive - last night's dinner was beef, with four different vegetables and then strawberries and cream. Under 30gm of carbs for the meal.
It means there is no need for medication, and I don't need to worry about anything to do with diabetes.
I used a glucose meter to fine tune my diet at first, to see what worked.
If I want cake, there are recipes for low carb ones, and recipes which have high carb items such as potato can be changed to use lower ones such as swede or cauliflower. Mashed swede with veges and eggs makes a great bubble and squeak, for instance, and cauliflower cheese with just cauliflower, cheese and seasoning is a big hit with many, even if they don't need to eat low carb.

 

[Cry18]

Could you not get a monitor and check your levels..

Not sure that complex carbs will help all that much.. you could try an ultra low carb diet which might give more relief (although may indeed appear slightly more restrictive) but worth it if you feel better?

I tested for two weeks when pregnant to make sure it didn’t turn into gestational diabetes and complex carbs were fine with me, including wholemeal bread as long as I had something with it, luckily. But I don’t have them too often and do have small portions when I do.

 

[Cry18]

I suppose that some might consider my type 2 controlling diet restrictive - last night's dinner was beef, with four different vegetables and then strawberries and cream. Under 30gm of carbs for the meal.
It means there is no need for medication, and I don't need to worry about anything to do with diabetes.
I used a glucose meter to fine tune my diet at first, to see what worked.
If I want cake, there are recipes for low carb ones, and recipes which have high carb items such as potato can be changed to use lower ones such as swede or cauliflower. Mashed swede with veges and eggs makes a great bubble and squeak, for instance, and cauliflower cheese with just cauliflower, cheese and seasoning is a big hit with many, even if they don't need to eat low carb.

Thank you. Well done for getting your diabetes into remission!

I find eating at home okay, it’s eating out that’s the problem. I know that there are low carb options - like salads - but it’s just miserable not being able to occasionally eat what I would like to like normal people.

 

[JoKalsbeek]

Thank you. Well done for getting your diabetes into remission!

I find eating at home okay, it’s eating out that’s the problem. I know that there are low carb options - like salads - but it’s just miserable not being able to occasionally eat what I would like to like normal people.

Two things I've got to second here: Your friends who let medication do all the work will end up with more meds, complications and possibly worse. My nan and a few other people I knew (yes, past tense, they're no longer with us due to diabetic complications) thought metformin and compatriots were a cure-all. They weren't. So nothing to envy there; if they're not at least mindful of what they're eating, it'll be a progressive condition indeed.

I follow a rather restrictive diet. Not just for the T2, but also because of rheumatism, wonky thyroid, migraines, mental illness, bladder pain, penchant for kidney stones, IBS and whatnot. Just meat, fish, poultry, cheese and eggs. My list of ailments is longer than my list of allowed foods. That's it, that's all the variety I get to work with. And guess what...? I still manage to eat out! There's massive amounts of excellent grill restaurants out there where I can eat my fill, buffets too, and in the Netherlands, eggs (sunny side up with bacon, ham, cheese, whatever) are a lunch staple. I just don't need the bread that goes with it. So I'm covered wherever I go. If that is true for someone who can eat next to nothing... There must be a way for you to regain some eating-out confidence! There's more to life than fish & chips and curries. A nice place will serve you excellent veggies and steak/salmon/mixed grill/chicken/whateveryouplease (hold the spuds, extra greens or meat, the kitchen won't mind one bit!), and how about a cheese platter for dessert? Or a coffee with whipped cream? (Not so much sugar in that it'd throw you for a hyper-with-hypo after!). You're not doomed to eat only salads till the end of your days, you know. When you want to go out, you might want to check the menu online and see if there's something you can work with. If you're worried, e-mail the chef. They don't mind, they'd rather help you than toss out half your plate. Or have their customer become sick with their dinners because you feel a need to eat everything out of politeness. I have a few places I stick to and they know I tip well for the effort, and if there's a new place to visit, I ask whether I can be somewhat difficult, and they're free to kick me out or just serve me water, I'm fine with that. Hasn't happened yet though. I mean... There's a lot of kitty café's I frequent and they've made up special platters just for me, with components of a few meals I can't have in their entirety. (Eggs? Cold cuts? Cheese? = custom made tapas platter!). I have social anxiety and it was so very hard to be an extra-special case and have to ask for special treatment... But once I gathered the courage and was met mainly with "sure, we can do that!" 's, it's become easier. I've not even had trouble in McDonalds! (Just a stack of 5 juicy beef patties and a bottle of water, thanks!).

I'm a T2, I know it's different for me. But please, don't lose hope. There is a world of food to enjoy out there still, that you don't have to cook yourself. Might not feel like it now, but... You have more options than you may think.

Good luck!
Jo

 

[NicoleC1971]

Thank you. Well done for getting your diabetes into remission!

I find eating at home okay, it’s eating out that’s the problem. I know that there are low carb options - like salads - but it’s just miserable not being able to occasionally eat what I would like to like normal people.

I'd agree that I would be miserable watching my friends eating pasta etc. whilst tucking into a salad but I think you've underestimated what foods you can still love and eat without triggering a low.

I know your RH means you suffer if you eat the wrong things but why not focus on all the really good for you other stuff e.g ribeye steak, burger with halloumi, fish, chicken with the skin on, English fry up without the toast? Can you tolerate a small amount of chocolate? Nicking a couple of chips from your friend's plate? What happens if you drink a dry red wine or spirits rather than beer/full fat coke/juice?

When you go out I'd suggest most places will do better than salad e.g. Italians usually offer a steak or fish option, Indians can be enjoyed without rice or naan bread (extra side dishes instead) and pubs vary but I can usually find alternatives to breaded stuff/pasta. Chinese can be a bit sticky/sweet but other than Subway I can't think of anywhere that's impossible. Look on it as a challenge and remember that you're missing out on junky starch in the main so a bit of quiet smugness is in order. Not misery!

 

[Fenn]

I agree, it’s bloody terrible, the only thing we can do when we feel like that, is help someone else, have a reason for the struggle, if it’s impossible to enjoy life, help someone else enjoy there’s, then at least your time here wasn’t a waste

If I’m feeling bad about restricting my diet, when eating is one of my few pleasures in life, I really don’t want to see the word “salad” I want to be told I can have a six pack of cheese and onion walkers and a duty free toblerone Honesty Can be such a pain

 

[Resurgam]

In pubs I drink something diet and non alcoholic as I am driving, but at home I have an alcoholic drink once in a while - rum and coke or vodka and bitter lemon - there's no need to abstain from alcohol.
I put a small amount into the mix when making a sorbet, so it is less crunchy with ice crystals.

 

[Cry18]

I agree, it’s bloody terrible, the only thing we can do when we feel like that, is help someone else, have a reason for the struggle, if it’s impossible to enjoy life, help someone else enjoy there’s, then at least your time here wasn’t a waste

If I’m feeling bad about restricting my diet, when eating is one of my few pleasures in life, I really don’t want to see the word “salad” I want to be told I can have a six pack of cheese and onion walkers and a duty free toblerone Honesty Can be such a pain

This is exactly it! I know there are options, but I just want to be able to eat whatever I like like the majority of the population food is one of the only joys in life, and this robs you of most of it. Except for cheese

 

[Cry18]

In pubs I drink something diet and non alcoholic as I am driving, but at home I have an alcoholic drink once in a while - rum and coke or vodka and bitter lemon - there's no need to abstain from alcohol.
I put a small amount into the mix when making a sorbet, so it is less crunchy with ice crystals.

Do diet drinks not have an effect on your blood sugar? I’m not even bothered about alcoholic drinks, just anything other than water would be nice.

 

[Cry18]

I'd agree that I would be miserable watching my friends eating pasta etc. whilst tucking into a salad but I think you've underestimated what foods you can still love and eat without triggering a low.

I know your RH means you suffer if you eat the wrong things but why not focus on all the really good for you other stuff e.g ribeye steak, burger with halloumi, fish, chicken with the skin on, English fry up without the toast? Can you tolerate a small amount of chocolate? Nicking a couple of chips from your friend's plate? What happens if you drink a dry red wine or spirits rather than beer/full fat coke/juice?

When you go out I'd suggest most places will do better than salad e.g. Italians usually offer a steak or fish option, Indians can be enjoyed without rice or naan bread (extra side dishes instead) and pubs vary but I can usually find alternatives to breaded stuff/pasta. Chinese can be a bit sticky/sweet but other than Subway I can't think of anywhere that's impossible. Look on it as a challenge and remember that you're missing out on junky starch in the main so a bit of quiet smugness is in order. Not misery!

Thanks for your reply. Do you not find curries have sugar in them? I’ve been and avoided carbs and the next day I feel extremely tired, which is what happens when I have carbs / sugar.

 

[Cry18]

Two things I've got to second here: Your friends who let medication do all the work will end up with more meds, complications and possibly worse. My nan and a few other people I knew (yes, past tense, they're no longer with us due to diabetic complications) thought metformin and compatriots were a cure-all. They weren't. So nothing to envy there; if they're not at least mindful of what they're eating, it'll be a progressive condition indeed.

I follow a rather restrictive diet. Not just for the T2, but also because of rheumatism, wonky thyroid, migraines, mental illness, bladder pain, penchant for kidney stones, IBS and whatnot. Just meat, fish, poultry, cheese and eggs. My list of ailments is longer than my list of allowed foods. That's it, that's all the variety I get to work with. And guess what...? I still manage to eat out! There's massive amounts of excellent grill restaurants out there where I can eat my fill, buffets too, and in the Netherlands, eggs (sunny side up with bacon, ham, cheese, whatever) are a lunch staple. I just don't need the bread that goes with it. So I'm covered wherever I go. If that is true for someone who can eat next to nothing... There must be a way for you to regain some eating-out confidence! There's more to life than fish & chips and curries. A nice place will serve you excellent veggies and steak/salmon/mixed grill/chicken/whateveryouplease (hold the spuds, extra greens or meat, the kitchen won't mind one bit!), and how about a cheese platter for dessert? Or a coffee with whipped cream? (Not so much sugar in that it'd throw you for a hyper-with-hypo after!). You're not doomed to eat only salads till the end of your days, you know. When you want to go out, you might want to check the menu online and see if there's something you can work with. If you're worried, e-mail the chef. They don't mind, they'd rather help you than toss out half your plate. Or have their customer become sick with their dinners because you feel a need to eat everything out of politeness. I have a few places I stick to and they know I tip well for the effort, and if there's a new place to visit, I ask whether I can be somewhat difficult, and they're free to kick me out or just serve me water, I'm fine with that. Hasn't happened yet though. I mean... There's a lot of kitty café's I frequent and they've made up special platters just for me, with components of a few meals I can't have in their entirety. (Eggs? Cold cuts? Cheese? = custom made tapas platter!). I have social anxiety and it was so very hard to be an extra-special case and have to ask for special treatment... But once I gathered the courage and was met mainly with "sure, we can do that!" 's, it's become easier. I've not even had trouble in McDonalds! (Just a stack of 5 juicy beef patties and a bottle of water, thanks!).

I'm a T2, I know it's different for me. But please, don't lose hope. There is a world of food to enjoy out there still, that you don't have to cook yourself. Might not feel like it now, but... You have more options than you may think.

Good luck!
Jo

thanks for the lengthy reply! I know there are options, my point was more that having to constantly think about what you’re eating and avoid all of the nice food is quite depressing. I would just love to be like a normal person and be able to have a pizza and brownie once in a while with no consequences

 

[ziggy_w]

thanks for the lengthy reply! I know there are options, my point was more that having to constantly think about what you’re eating and avoid all of the nice food is quite depressing. I would just love to be like a normal person and be able to have a pizza and brownie once in a while with no consequences

Hi @Cy18,

I am utterly convinced that I suffered from RH before becoming T2. I did not have a glucose meter back then (so don't know for sure), but I definitely remember being at a McDonald's restaurant and feeling starved to such an extent that I was no longer able to decide what to order (which was possibly a sign of low blood sugar). I just felt totally paralized and close to crying.

Possibly, it would be helpful to think of your RH as the first warning sign of impending T2 -- anyway I wished I had understood it this way way back then.

Today, I look at this rather as a matter of all the great foods, I can still enjoy rather than I what I can't have (I'm on less than 20g of carbs per day btw) rather than as food restrictions. Tbh, it does involve a lot more cooking and food preparation than than before diagnosis (so not going to kid you there), but when eating out, I usually have no problems, when asking to replace starchy food with more vegetables (most restaurants will have no problems with this).

I will also tag @Brunneria and @Lamont D, who are much more knowlegdeable about reactive hypoglycemia. I'm sure their insights will be much more helpful than mine on this topic.

 

[Lamont D]

Hi, yes it is really hard to get used to eating like this. I was diagnosed eight years ago and I really do know what you are going through right now.
I have a couple of suggestions for you.
The first is that if you are anything like me, then even complex low GI carbs are bad for you. Let me explain. If you have any carbs, because of the initial insulin response, you will not have enough insulin to cope with the glucose derived from the carbs.
You spike high, then the brain tells your pancreas, to get some insulin to counter the glucose. So it does and what is known as a overshoot of insulin floods your blood.
This in turn will drive your blood glucose levels into Hypoglycaemia.
The reason why you feel awful is because as soon as you eat first thing, if there is carbs, your blood glucose levels will be going up and down all day. This is other than hypo symptoms, the reason why nothing has changed even after diagnosis.
Unless you get a monitor, how will you know what your blood glucose levels are doing?
The other recommendation I have had, with decent results is sitagliptin.
There is a video on YouTube about and i took part in a trial of the drug.
I still went hypo, but it wasn't as bad. I am non diabetic.

 

[Cry18]

Hi, yes it is really hard to get used to eating like this. I was diagnosed eight years ago and I really do know what you are going through right now.
I have a couple of suggestions for you.
The first is that if you are anything like me, then even complex low GI carbs are bad for you. Let me explain. If you have any carbs, because of the initial insulin response, you will not have enough insulin to cope with the glucose derived from the carbs.
You spike high, then the brain tells your pancreas, to get some insulin to counter the glucose. So it does and what is known as a overshoot of insulin floods your blood.
This in turn will drive your blood glucose levels into Hypoglycaemia.
The reason why you feel awful is because as soon as you eat first thing, if there is carbs, your blood glucose levels will be going up and down all day. This is other than hypo symptoms, the reason why nothing has changed even after diagnosis.
Unless you get a monitor, how will you know what your blood glucose levels are doing?
The other recommendation I have had, with decent results is sitagliptin.
There is a video on YouTube about and i took part in a trial of the drug.
I still went hypo, but it wasn't as bad. I am non diabetic.

i monitored for two weeks when pregnant and found they were fine - including wholemeal bread as long as I had something with it.

the extent of the help from the endo was to say to avoid carbs and sugar on their own and that it’s not as bad as diabetes, then sent me on my way. No suggestion of a glucose monitor, so I’ve just been going on symptoms.