Is this type 1? Reactive hypo?

[lilyrosebun]

Hi! My entire life I've been dealing with what I now know is reactive hypoglycemia. I vividly remember eating a ton in the morning because I was scared of getting "woozy" and not having snacks prepared during elementary school. I also remember nearly passing out several times in P.E. class just two hours after lunch. Over the years I've managed it by having snacks and protein with each meal, but it's been getting more difficult as I've gotten older. Whenever I go out with friends they can not eat for 4 hours while I get so shaky and sweaty and dizzy and irritable and I feel too embarrassed to say I need to eat. Like..what excuse do I have?? I don't have diabetes so I can't say "I'm diabetic so that's why I'm having some hypo episode"..I feel like such a burden and it's frustrating that I can't go anywhere without anxiety over getting low blood sugar.

My mom has the same thing and she gets woozy pretty often. She said her mother dealt with it, too. My mom says just to eat frequently, which I do, but it's still frustrating. And idk if non diabetic reactive hypo is genetic so it's weird that all 3 of us have it.

I'm not sure if I have any hyperglycemia symptoms but I do have to pee A LOT (or, I feel the need to, at least) and in the mornings I'm usually very full, kind of nauseous, hot, and thirsty. I feel sick after eating a lot, or even "normal" amounts when I go out with friends.

Also, I have dealt with anorexia for many years but I've been doing well for this past year, so new foods/normal amounts of food/eating out really shouldn't be bothering my stomach this much anymore.

Is this really just some non diabetic genetic thing?? or something else??

 

[Antje77]

Why not get a glucose monitor and some test strips to see if blood sugar has anything to do with your symptoms? It definitely isn't type1 (you posted in the type1 section of the forum). I'm tagging @Lamont D for you, I believe he knows about everything about reactive hypoglyceamia there is to know.
Good luck!

 

[Bluetit1802]

May I ask if you have seen any doctors about this, and what they have said? Have you had any diabetes diagnostic tests, and what were the results?

Welcome to the forum.

 

[lilyrosebun]

Why not get a glucose monitor and some test strips to see if blood sugar has anything to do with your symptoms? It definitely isn't type1 (you posted in the type1 section of the forum). I'm tagging @Lamont D for you, I believe he knows about everything about reactive hypoglyceamia there is to know.
Good luck!

I have no idea what brand or type to buy.

 

[lilyrosebun]

May I ask if you have seen any doctors about this, and what they have said? Have you had any diabetes diagnostic tests, and what were the results?

Welcome to the forum.

I have not. I've had my finger pricked randomly at my last appointment but they didn't tell me the results or anything. Since I had anorexia they said I must be dizzy because I was malnourished and so I just didn't mention that it has happened forever.

 

[Bluetit1802]

I have no idea what brand or type to buy.

I gather from your initial post that you are not in the UK?

The type of meter you buy really doesn't matter a great deal. They all have to meet the same accuracy standards before they can be marketed. What you do have to be careful of is the cost of the testing strips, which can be reasonable or can be extremely expensive if you are self-funding. So do make sure you check this out. Each meter has its own testing strips that are not interchangeable.

If you buy a meter, and I strongly advise you to, you can gather together important information for your doctor. You can test whenever you have these hypo-type episodes, and at other times such as when fasting (when you get up), and at various periods after meals, such as half hourly. That is particularly important if you have been eating carbs or anything with sugar in. Keeping a food diary will help enormously.

 

[lilyrosebun]

I gather from your initial post that you are not in the UK?

The type of meter you buy really doesn't matter a great deal. They all have to meet the same accuracy standards before they can be marketed. What you do have to be careful of is the cost of the testing strips, which can be reasonable or can be extremely expensive if you are self-funding. So do make sure you check this out. Each meter has its own testing strips that are not interchangeable.

If you buy a meter, and I strongly advise you to, you can gather together important information for your doctor. You can test whenever you have these hypo-type episodes, and at other times such as when fasting (when you get up), and at various periods after meals, such as half hourly. That is particularly important if you have been eating carbs or anything with sugar in. Keeping a food diary will help enormously.

Nope, USA. Okay, thank you. Should I try eating, lets say, chips (just carbs) and take it as to show the hypo episode or just after normal, balances meals? Would it help to purposely have hypo as to show the results?

 

[Bluetit1802]

Nope, USA. Okay, thank you. Should I try eating, lets say, chips (just carbs) and take it as to show the hypo episode or just after normal, balances meals? Would it help to purposely have hypo as to show the results?

You need a Reactive Glycaemia expert to answer this question. I am T2.
Tagging @Brunneria and @Lamont D

 

[Brunneria]

Hi and welcome @lilyrosebun

Would you like me to move this thread to the RH section of the forum? You may get more RHers commenting if I do.

Regarding the suggestions above, i would stronly urge you to get a blood glucose monitor and start checking whether your woozy episodes coincide with low blood glucose.

I wouldn’t change your diet til you have done that, because if you do, you won’t know which change was effective.

Have you got a doctor you can take your blood glucose test results to?

 

[lilyrosebun]

Hi and welcome @lilyrosebun

Would you like me to move this thread to the RH section of the forum? You may get more RHers commenting if I do.

Regarding the suggestions above, i would stronly urge you to get a blood glucose monitor and start checking whether your woozy episodes coincide with low blood glucose.

I wouldn’t change your diet til you have done that, because if you do, you won’t know which change was effective.

Have you got a doctor you can take your blood glucose test results to?

Yes, thank you! and no, I haven't gotten that test. Should I do that at a random time or after I wake up and before a meal?

 

[Brunneria]

I have moved your thread to the RH section as requested.

If you get yourself a home blood glucose meter, the best way for you to test is to do it when you get symptoms. It your blood glucose is lower than normal when you test, you are experiencing a hypo.

Are you in the UK?
If so, the most economical way to fund your own blood glucose testing is to buy a meter and the test strips yourself. The NHS is very reluctant to provide blood glucose testing equipment to non type 1 diabetics.

From memory, the two brands of good value meters I know of, are the Tee2 (from Spirit Health) and the Codefree (from Codefree)

I should have a read around the RH threads. Lots of discussion and info on individual experiences. They may resonate with you, or not. However, without evidence of low blood glucose, there remain other possibilities, also potentially hereditary. These include food intolerances and things like drops in blood pressure after eating.

Please let us know how you get on?

 

[Lamont D]

Hi! My entire life I've been dealing with what I now know is reactive hypoglycemia. I vividly remember eating a ton in the morning because I was scared of getting "woozy" and not having snacks prepared during elementary school. I also remember nearly passing out several times in P.E. class just two hours after lunch. Over the years I've managed it by having snacks and protein with each meal, but it's been getting more difficult as I've gotten older. Whenever I go out with friends they can not eat for 4 hours while I get so shaky and sweaty and dizzy and irritable and I feel too embarrassed to say I need to eat. Like..what excuse do I have?? I don't have diabetes so I can't say "I'm diabetic so that's why I'm having some hypo episode"..I feel like such a burden and it's frustrating that I can't go anywhere without anxiety over getting low blood sugar.

My mom has the same thing and she gets woozy pretty often. She said her mother dealt with it, too. My mom says just to eat frequently, which I do, but it's still frustrating. And idk if non diabetic reactive hypo is genetic so it's weird that all 3 of us have it.

I'm not sure if I have any hyperglycemia symptoms but I do have to pee A LOT (or, I feel the need to, at least) and in the mornings I'm usually very full, kind of nauseous, hot, and thirsty. I feel sick after eating a lot, or even "normal" amounts when I go out with friends.

Also, I have dealt with anorexia for many years but I've been doing well for this past year, so new foods/normal amounts of food/eating out really shouldn't be bothering my stomach this much anymore.

Is this really just some non diabetic genetic thing?? or something else??

As far as I'm aware, because of how my RH materialised, by bacterial problems in my stomach, I believe. I have no reason or justification or know of no research that RH is
Hereditary. No one else in my big family has it.
But because of this, I am open minded to the possibility, that there is no reason why not!

You started your post by describing your youth years, this could be similar to childhood Hypoglycaemia, which is more common than you would believe.
However, since, you have an eating disorder, that would intensify the problem that a similar hypoglycaemia condition would do.
The recommended dietary advice is to eat small meals every two to three hours, so, maybe having a little snack between meals is important, until you get proper control over the symptoms.
Do never feel embarrassed about how to stop feeling awful or what people think, it's the anxiety second guessing you. If anyone else is in the same situation, they would not consider your feelings, they should and you must react to the symptoms you are getting.
I'm not sure how you go about seeing a specialist endocrinologist in the states, but it would help you to get one. You need referral to a specialist in Hypoglycaemia.
However, as mentioned, you need a glucometer. But also a food diary, this will help with whatever is happening to you.
You need to discover which foods are triggering the hyper, hypo, if you are getting the symptoms. The symptoms are telling me that you have high blood sugar levels and dropping rapidly after a couple of hours. Your spikes are to high. Your blood sugar is bouncing up and down because of the food you are eating.
You have not said, if you are aware of any food intolerance or allergies. Can you give us an idea of your daily intake.
I'm on a very low carb diet, this helps with control of your blood sugar levels.
Do read the threads on our forum.
Welcome to our forum

Best wishes

 

[Brunneria]

Nope, USA. Okay, thank you. Should I try eating, lets say, chips (just carbs) and take it as to show the hypo episode or just after normal, balances meals? Would it help to purposely have hypo as to show the results?

Oops, missed that you are from the States. In which case, please ignore my suggestions for a blood glucose meter, because they were English.

 

[lilyrosebun]

I have moved your thread to the RH section as requested.

If you get yourself a home blood glucose meter, the best way for you to test is to do it when you get symptoms. It your blood glucose is lower than normal when you test, you are experiencing a hypo.

Are you in the UK?
If so, the most economical way to fund your own blood glucose testing is to buy a meter and the test strips yourself. The NHS is very reluctant to provide blood glucose testing equipment to non type 1 diabetics.

From memory, the two brands of good value meters I know of, are the Tee2 (from Spirit Health) and the Codefree (from Codefree)

I should have a read around the RH threads. Lots of discussion and info on individual experiences. They may resonate with you, or not. However, without evidence of low blood glucose, there remain other possibilities, also potentially hereditary. These include food intolerances and things like drops in blood pressure after eating.

Please let us know how you get on?

In USA! I haven't been diagnosed with food intolerances. Just went to the store and the monitors themselves, without the lancets and strips, were 15 dollars at the cheapest. Then I needed to buy strips, batteries, and lancets, which was just too much.

 

[lilyrosebun]

As far as I'm aware, because of how my RH materialised, by bacterial problems in my stomach, I believe. I have no reason or justification or know of no research that RH is
Hereditary. No one else in my big family has it.
But because of this, I am open minded to the possibility, that there is no reason why not!

You started your post by describing your youth years, this could be similar to childhood Hypoglycaemia, which is more common than you would believe.
However, since, you have an eating disorder, that would intensify the problem that a similar hypoglycaemia condition would do.
The recommended dietary advice is to eat small meals every two to three hours, so, maybe having a little snack between meals is important, until you get proper control over the symptoms.
Do never feel embarrassed about how to stop feeling awful or what people think, it's the anxiety second guessing you. If anyone else is in the same situation, they would not consider your feelings, they should and you must react to the symptoms you are getting.
I'm not sure how you go about seeing a specialist endocrinologist in the states, but it would help you to get one. You need referral to a specialist in Hypoglycaemia.
However, as mentioned, you need a glucometer. But also a food diary, this will help with whatever is happening to you.
You need to discover which foods are triggering the hyper, hypo, if you are getting the symptoms. The symptoms are telling me that you have high blood sugar levels and dropping rapidly after a couple of hours. Your spikes are to high. Your blood sugar is bouncing up and down because of the food you are eating.
You have not said, if you are aware of any food intolerance or allergies. Can you give us an idea of your daily intake.
I'm on a very low carb diet, this helps with control of your blood sugar levels.
Do read the threads on our forum.
Welcome to our forum

Best wishes

Thank you for all the info!! I absolutely need a monitor? My mom has gone without one and she's 59..makes me wonder if she's at any dangers without one as she ages. My diet is pretty standard, I try to incorporate protein at each meal and have been upping my fat intake. Usually a sandwhich with protein on it, fruit, and something salty. Breakfast is oatmeal or some carb with protein or fat and a little fruit. I have something with 10-18 g of sugar and small amount of carbs as a snack during the day. Dinner is sometimes a stirfry or starch + protein + veggies + small amount of healthy fat. Then I have a snack before bed, usually with protein and some fat and a bit of sugar (not too much!), or else I get hypo as I try to fall asleep, I've found.

 

[Brunneria]

At the moment, you are experiencing woozyness and assuming that it is because of RH. It may well be, but without testing your blood glucose to see if they are actually hypos, then you won’t know for certain.

Ideally a doctor should be listening and running various tests to eliminate other things til you get a diagnosis.
But if that isn’t happening, then running your own blood glucose tests will get you a step closer.

I totally sympathise about the costs. I pay all my own testing costs myself.

 

[Bluetit1802]

In USA! I haven't been diagnosed with food intolerances. Just went to the store and the monitors themselves, without the lancets and strips, were 15 dollars at the cheapest. Then I needed to buy strips, batteries, and lancets, which was just too much.

Yes, they can be expensive, but it pays to shop around, and use the internet to find cheaper ones. You only need one meter, but you do need hundreds of test strips, so pick one with the cheapest.

 

[Lamont D]

Thank you for all the info!! I absolutely need a monitor? My mom has gone without one and she's 59..makes me wonder if she's at any dangers without one as she ages. My diet is pretty standard, I try to incorporate protein at each meal and have been upping my fat intake. Usually a sandwhich with protein on it, fruit, and something salty. Breakfast is oatmeal or some carb with protein or fat and a little fruit. I have something with 10-18 g of sugar and small amount of carbs as a snack during the day. Dinner is sometimes a stirfry or starch + protein + veggies + small amount of healthy fat. Then I have a snack before bed, usually with protein and some fat and a bit of sugar (not too much!), or else I get hypo as I try to fall asleep, I've found.

Because we have not had a definitive diagnosis, we cannot say wether you should treat it as RH.
As it is, when someone actually gets a true diagnosis of Hypoglycaemia, the recommended dietary intake for that condition is to reduce carbs, sugars, starchy vegetables, plus increase your exercise routine a bit. Have meals every three hours, and stabilise your blood sugar as much as possible.
You do this until you find a balance of protein, fats, and a modicum of carbs that you can tolerate.
In my experience with RH, the amount of carbs, sugars, starchy foods, you are having, would be very bad for me and the symptoms would be horrendous.
Oatmeal spiked me within half an hour up ten points on my glucometer, then I went very low, that couldn't be recorded because it will was so low!
If you have RH, you are likely to be carb intolerant to a certain degree, how much you will discover when you start experimenting and testing with food.
Having a food diary, will help with your research

Best wishes

 

[lilyrosebun]

At the moment, you are experiencing woozyness and assuming that it is because of RH. It may well be, but without testing your blood glucose to see if they are actually hypos, then you won’t know for certain.

Ideally a doctor should be listening and running various tests to eliminate other things til you get a diagnosis.
But if that isn’t happening, then running your own blood glucose tests will get you a step closer.

I totally sympathise about the costs. I pay all my own testing costs myself.

Could it be a food allergy possibly? Just thought of that since Lamont asked if I have any allergies. I am lactose intolerant but haven't been tested for anything like gluten.

 

[Lamont D]

Could it be a food allergy possibly? Just thought of that since Lamont asked if I have any allergies. I am lactose intolerant but haven't been tested for anything like gluten.

You could be, but until you find out, who knows.
I am lactose intolerant because of the lactose is a form of sugar.
I am wheat and grain intolerant because of the starchy carbs. But surprisingly not gluten intolerant.
I am intolerant to starchy foods such as pasta, rice.
I hate the taste of green vegetables, I hate seafood! But fish I can eat, but not salmon, tuna, pilchards or anything out of a tin!
The worst for me is intolerant to potatoes! They soar and rocket my blood glucose levels to over fifteen mmols from normal levels within half an hour.
It is worse than when I had a glucose tolerance test.
Don't know why!
Any food with which the sugar involved end with ose, will spike me.
But the lowest spike from an ose is fruit, such as Apple, pears, berries and strawberries. A few bites of these fruits, don't do much at all to my blood levels.
So, who knows what affects you?
It took me a long time to find all this out.

It was necessary because I didn't have a clue except for the advice from certain friends on here and my endocrinologist.

Best wishes