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KitLily
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01 Sep 2023, 8:43 am

I am really at the end of my tether, I've been struggling along for years getting worse every year but apparently my fasting blood test is normal. I rarely go outside now in case I have a blood sugar drop and collapse.

Basically I have to eat almost constantly or I start collapsing i.e. get hot and cold sweats, heart palpitations, my energy drops right down so I can't move or talk.

I've been tested for diabetes but it's not that apparently.

I just don't know what to do. I have to plan constantly every meal what to eat and make sure to always, always have food available.

And I have loads of food intolerances i.e. gluten, dairy, corn, soya (mild), chocolate. I have to always rotate all the food I eat because if I eat too much of any food on any day I might throw up or get an upset tummy at least.

Does anyone else know what to do, how to cope, any strategies? I've tried the doctors but they just give me a fasting blood test which turns out to be on the very low end of the scale but 'normal' apparently.

No comments of 'you're very lucky to be thin' 'I wish I had your condition so I'd be thin' etc. please, those are now beyond a joke, having had them all my life.


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colliegrace
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01 Sep 2023, 9:10 am

Hypoglycemia sucks. I don't deal with it personally (I have hyperglycemia), but my mom gets hypo events sometimes and has to keep high glucose stuff with her in the event that she feels faint.
The scary part is if hypo events are common, you get so accustomed to them that you may not realize you're in a low until it's dangerous. (Which sounds like may be the case with you?)

That does sound very taxing, especially if you're also autistic and struggle with executive function.

Do you think a service dog might help? They have service dogs that can detect lows.


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KitLily
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01 Sep 2023, 9:30 am

thanks colliegrace.

The doctors won't even believe me that I have problems, maybe because I am not constantly bothering them about it. But if they don't believe me, why would I ask them? It's a vicious circle. I fear that one day I will collapse in a dangerous situation and it'll be too late.

How did you and your mum even get diagnosed?


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colliegrace
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01 Sep 2023, 9:58 am

Well unlike you, me and my mom are diabetic, so it got caught when we did some bloodwork and our blood sugars and A1C were through the roof.
Diabetics can have hypoglycemia, it is less common with type 2 though. Hypoglycemia can also be a thing on its own.

I wonder if buying a blood testing kit might be of use to you? You can get them at Walmart, no diagnosis needed. Take your sugar reading when you feel low.


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KitLily
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01 Sep 2023, 10:53 am

Thank you, I've done all that. It's a pain because my blood pressure is low and so it's hard to get blood out of me, at least I think that's the reason. By the time we've got the kit working, I've had to eat something because I'm near collapse. It's like teetering on the abyss for me.

It seems if someone has high blood sugar, all the alarm bells go off and doctors run round panicking, but they don't give a flying fig about low blood sugar, we're just left to cope.

If it was just the odd day this happens, okay, but it's almost every bloody day, I'm constantly on the alert for blood sugar drops and constantly planning or eating or cooking for myself, it has taken over my life.


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neilinmich
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01 Sep 2023, 12:10 pm

I'm sorry you're going through this.

I'm wondering if you're also having high sugar spikes just before you get the low blood sugar symptoms. Could you test your blood sugar throughout the day with one of those glucose monitors for a while, to see if there a pattern to this? That would give you something new to tell the doctor. Or it might help you find a way out of this without the doctor.

I'm addicted to sugar (carbs) and before I got a handle on it I would eat enough sweets at once to make me pass out (fall asleep) from hypoglycemia. I ate sugar, my glucose went way up, I secreted insulin, my glucose when way down and I crashed.



KitLily
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01 Sep 2023, 1:25 pm

I don't think I am having high sugar spikes, the blood sugar just falls lower and lower as time goes by. It's like, I eat a meal then within an hour of that I have to eat another one. Then those two meals keep me going for a while but fairly soon after I need to eat another meal.

I've never had a sweet tooth, I'm more of a savoury person so I don't know why it happens.

I did a DNA test and the health aspect of it said I probably can't digest carbohydrates very well so it could be that. But I've no idea what to do about it :?


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NeilM
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02 Sep 2023, 10:45 pm

Sorry to hear you are having so much trouble. Unfortunately, doctors know diabetes quite well but hypoglycemia they receive little training on and thus know little about. That's why they get the impression that if one's blood sugar drops, you should eat something sugar laden to boost it back up. Not realizing that would only cause yet another over secretion of insulin.

I deal with hypoglycemia but have things pretty well under control. I do a lot of my own cooking, including bread making, and can maintain a fairly level blood sugar.

Perhaps the most important thing to know is that carbs should not be lumped together. There are simple carbs, the ones that have to be avoided and then there are the complex carbs that are beneficial and thus desirable. The simple carbs are white sugar and other refined sweeteners, white flour, white rice, among others. On the other hand, the good guys are foods such as beans (especially dried ones you cook yourself), brown rice, whole wheat flour, and products made from whole wheat flour. While flour needs to be avoided because it can cause a blood sugar spike just like white sugar. So that means white bread is out along with white flour pasta. Better to eat 100% whole wheat bread and pasta. I don't know about in the UK but here in the US it near impossible to find bread in the store that does NOT contain sugar. That's why I make most of my bread myself. Back to beans and rice, its good to have a small bowl of them with your evening meal to help maintain your blood sugar thru the night.

If you would like, I can post some of what I eat when but I won't bore you if you don't feel it would help.


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KitLily
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03 Sep 2023, 6:50 am

NeilM wrote:
Sorry to hear you are having so much trouble. Unfortunately, doctors know diabetes quite well but hypoglycemia they receive little training on and thus know little about. That's why they get the impression that if one's blood sugar drops, you should eat something sugar laden to boost it back up. Not realizing that would only cause yet another over secretion of insulin.

I deal with hypoglycemia but have things pretty well under control. I do a lot of my own cooking, including bread making, and can maintain a fairly level blood sugar.

Perhaps the most important thing to know is that carbs should not be lumped together. There are simple carbs, the ones that have to be avoided and then there are the complex carbs that are beneficial and thus desirable. The simple carbs are white sugar and other refined sweeteners, white flour, white rice, among others. On the other hand, the good guys are foods such as beans (especially dried ones you cook yourself), brown rice, whole wheat flour, and products made from whole wheat flour. While flour needs to be avoided because it can cause a blood sugar spike just like white sugar. So that means white bread is out along with white flour pasta. Better to eat 100% whole wheat bread and pasta. I don't know about in the UK but here in the US it near impossible to find bread in the store that does NOT contain sugar. That's why I make most of my bread myself. Back to beans and rice, its good to have a small bowl of them with your evening meal to help maintain your blood sugar thru the night.

If you would like, I can post some of what I eat when but I won't bore you if you don't feel it would help.


Thanks for your kind comments. :)

I get that impression about doctors too: they know what to do with diabetes but the other extreme passes them by. They say 'just eat something then' but it's got to the point where I have to take food and water everywhere with me just in case I get a drop in blood sugar and collapse, so I've given up leaving the house because it's too difficult and frightening. Luckily I have a job online I can do.

I also do a lot of my own cooking as I have a lot of food intolerances and it's rare to find ready made foods I can eat, so it's just simpler to cook my own stuff. But very time consuming. My life is Cook. Eat. Cook. Eat. Cook. Eat. all the time.

Unfortunately my food intolerances include gluten and dairy so all wheat and bread is out. I have found one type of gluten free bread I can eat. But mostly I live on vegetables, fish, meat and gluten free grains i.e. millet and quinoa.

Obviously I have treats sometimes but generally my life is ruled by the Cook. Eat. Cook. Eat timetable.


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FleaOfTheChill
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03 Sep 2023, 9:53 am

Have you ever been tested to see if you're lacking in vitamins, minerals? I'm also curious how many calories you're getting in a day. I ask because I have low blood sugar and low blood pressure but not bad enough to get a dx proper for either, and when I'm at my worst with dropping to the ground with this stuff, it tends to coincide with my diet lacking in one (or more) of the above. If your diet is really restricted due to intolerances, it might be worth looking into if you haven't already. I wish I had more to offer, but the best I have is to say I get it as much as I can and I'm sorry you have this going on. It sucks. I hope you can find a solution to this sooner than later.



NeilM
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03 Sep 2023, 10:49 am

I totally understand where you are coming from. I too have a lot of other things going on like being allergic to eggs, unable to eat red meat, most dairy is out, among other things. Fortunately tho I can handle gluten so I am thankful for that. Have you tried some alternative flours such as spelt? Or soy flour?

My main diet is down to chicken, fish, and vegetarian dishes. I rotate thru them this way: chicken, vegetarian (with tofu), fish, vegetarian (without tofu). I keep dried beans and brown rice cooked all the time. I cook them in my Instant Pot which makes it so much easier.

I have known I am hypoglycemic since 1983. I have gotten this far thru trial and error and keeping records.


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KitLily
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03 Sep 2023, 12:28 pm

FleaOfTheChill wrote:
Have you ever been tested to see if you're lacking in vitamins, minerals? I'm also curious how many calories you're getting in a day. I ask because I have low blood sugar and low blood pressure but not bad enough to get a dx proper for either, and when I'm at my worst with dropping to the ground with this stuff, it tends to coincide with my diet lacking in one (or more) of the above. If your diet is really restricted due to intolerances, it might be worth looking into if you haven't already. I wish I had more to offer, but the best I have is to say I get it as much as I can and I'm sorry you have this going on. It sucks. I hope you can find a solution to this sooner than later.


Thank you :heart:

Maybe I don't eat enough, but I'm generally eating all day so I don't know. It's tiring.


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KitLily
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03 Sep 2023, 12:31 pm

NeilM wrote:
I totally understand where you are coming from. I too have a lot of other things going on like being allergic to eggs, unable to eat red meat, most dairy is out, among other things. Fortunately tho I can handle gluten so I am thankful for that. Have you tried some alternative flours such as spelt? Or soy flour?

My main diet is down to chicken, fish, and vegetarian dishes. I rotate thru them this way: chicken, vegetarian (with tofu), fish, vegetarian (without tofu). I keep dried beans and brown rice cooked all the time. I cook them in my Instant Pot which makes it so much easier.

I have known I am hypoglycemic since 1983. I have gotten this far thru trial and error and keeping records.


Thanks. I've been like this as long as I can remember, although getting steadily worse over the years, and my mum said my dad also had to eat regularly or he got low in sugar. But he died 40 years ago so I never got to ask him about it.

I often think I should rotate foods in my diet but that would almost be impossible with my family who don't have intolerances. It's so tiring and disheartening.

I've been wondering if I should do that thing "eat breakfast like a king, lunch like a prince, and dinner like a pauper," because I need lots and lots of food in the morning to get going, then I can slack off a bit.

How I managed to get through pregnancy and breast feeding, I'll never know. I was bedridden most of the time. :roll:


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KitLily
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03 Sep 2023, 12:32 pm

thanks to everyone who is helping me. I get so tired of people saying 'I wish I had your problems, then I'd be as thin as you.' f**k off those people.


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FleaOfTheChill
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03 Sep 2023, 10:45 pm

^ truth.

That sort of thing used to drive me nuts. People can be insensitive and oblivious. Sometimes I'd fuss back at them how it must be nice to be able to stand up without seeing stars and having the room spin and maybe even dropping to the ground for who knows how long?... I used to get real snarky about that stuff.

Don't get me wrong, I'm glad when people don't understand that. No one should have to understand that. It's not fun. It's not okay. But they could be decent about it.

You mentioned eating breakfast like a king... that' something I've been doing for a few years now and I wonder if it did help me. I diversified my diet more in the last what, five years or so? Most of it has been done in the last three years and I've seen huge benefits on the sugar crashing front. But I also have been eating a lot for my first meal and less for the others. I wonder if that has helped and I didn't notice that as I was more fixated on the variety of things I've introduced (the bulk of my issues have stemmed from self limiting foods... I have restrictive tendencies as well as some allergies). If you decide to try that, let us know if you find it helpful, will you? I'm curious what your results will be.



KitLily
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04 Sep 2023, 5:56 am

Either that or I go into gruesome detail about what my food intolerances and allergies do to me. And it is not nice at all. People go 'ugh' and screw their faces up. Well guys, you did ask for it :lol:

I don't know what I'll do, it's always a gamble each day whether I'll find enough to eat. I have put on a bit of weight lately though so that is something. And at least I don't go to bed starving and wake up starving in the night now.


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