Having a lot of issues with RH-uncertainty.

[Keatsy1987]

Hi all. I hope everyone is doing well and finding their answers.


I’ve been struggling the past few years, and my situation is not as straight forward and a bit complicated. I’m hoping that by joining the forum, I’ll be able to get myself pointed in the right direction, find some answers and ultimately better my life.


I will try to cliff notes this as best as possible, but here’s my history:


Always had issues with fatigue, anxiety, depression, etc. Medication helped for a while but I started having really bizarre symptoms about 4 years ago that were horrifying but so vague, I was having trouble getting a diagnosis. (Fatigue, dizziness, weakness, anxiety, DPDR, tremors, etc.) To be honest, to this day, I don’t really know what is happening, or what multiple things are happening, but I do know at this point a huge trigger is my blood sugar.


About four years ago, I started having a lot of issues eating. As soon as I ate, my heart rate would jack-up, I’d feel sick, dizzy, and then ultimately absolutely exhausted afterwards as it “settled down”. Got tested for a million things including POTS, Lyme, vitamin deficiencies, stomach issues/bacteria, etc. All came back “normal”.


So I lived this way for a while. I was having severe acid reflux and ultimately had surgery to redirect my stomach (same as gastric bypass) about two years ago. The acid reflux resolved but as you can guess, the rest did not, and now everything was worse. (I never considered it being an issue because medical professionals were telling me it was not blood sugar related, as all my test and fasting came back ok, so I just trusted them).


Now I’m at a point where I feel like I’m going to lose my life. I am constantly tired, brain fog, and have severe anxiety, depression and dissociation. This was all *drastically* made worse by the fact that they put me on Xanax and antidepressants back when this started, and I had *severe* withdrawal when they pulled me off quickly. The medications were having a paradoxical effect on my body, especially my CNS, after a while and it was a lose-lose situation. Since then, almost every system has been affected. It’s my understanding that it can take years for the body and brain to regrow the damage done from psychiatric meds, and several affects the limbic and endocrine systems, which is what I believe is going on largely.


So, I have several things, if not all, I believe this could be, but don’t know. My current issue is basically that I have a baseline of just feeling like ****. I eat, and then it’s like a downhill slope from there. Carbs and sugars made it far worse, but I seem to get it with anything I eat. Once my blood sugar goes up, even ten, twenty points, it’s like I’m done for the day.


The odd thing is: rarely does my blood sugar go into severe hypo or hyper. Fasting levels are totally normal, yet I feel horrible. I feel a tiny bit better when I eat, for a short period, but often the act of eating seems to fire off my nervous system and make me anxious and severely fatigued. And when my blood sugar drops…it feels like I’m dying. As in, literally. It feels like I’m on a boat, I feel half asleep, can’t think, and have severe muscle weakness and agitation both physically and mentally. Sometimes I’ll start crying for no reason or feel incredibly angry. The doctors diagnosed me with reactive hypoglycemia, which makes sense with bypass surgery/dumping syndrome, but I had this for about two years before that as well.


I also don’t know if I have “actual” hypoglycemia since my numbers rarely fall below 70. It seems like my body just has an extreme reaction to *any* change in blood sugar, and more so to a drop, even if it’s still in normal numbers.


I feel completely lost. I want my life back. I don’t know the cause of all this or how to make it better. This “eat 8-9 times a day” isn’t logical and doesn’t really help, and I almost feel more tired because my body is *constantly* digesting. I get mixed messages on what to eat, how to eat, etc. I would like to try keto but am scared because if my fasting levels at 80-90 make me feel crummy, would that mean I need more carbs? But then how do I stop the roller coaster?


Doctors are no help and keep repeating the same tests and giving me the same advice, which is just Pinterest style charts of eating small meals more frequently, which doesn’t help. My body reacts to even the smallest changes.


I recently had vitamin levels checked and all were within normal range. A few on the lower end, but I’ve felt this way in the past when they were higher.


Some recent testing I had done (December) if it helps:


1. Insulin Antibodies (<0.4 u/ml)

2. Glutamic Acid Decarboxylase Antibodies (<5.0 iu/ml)

3. Fasting glucose level: 89

4. Thyroid Stim. Hormone (1.38 uiu/ml)

5. Insulin-Like Growth Factor 1 (141 ng/ml)

6. T3 (98 ng/dl)

7. ACTH (11 pg/mL)

8. HbA1c (4.7%)

9. EAG (88 mg/dl)

10. Insulin 4.9 uU/ml)


The one test I repeatedly get back as almost double or triple the levels is cortisol. I have almost severe panic in the morning with high cortisol levels, and then afternoon and night are in normal ranges. I don’t have any symptoms of Cushing’s or related conditions. I have heard that withdrawal can cause this imbalance in the body as well.


I have no idea what’s going on other than I’ve been told I have reactive hypoglycemia, possible dumping syndrome, and given basic info from doctors about diet that isn’t helping. I don’t understand why I’m having hypoglycemic symptoms when my levels are in the normal range. The drop/coming down is by far the worst and renders me bedbound at times.

I am currently 35, female, weigh 130 lbs at 5'5".


Thank you all for your time if you read this. Please help.

 

[JAT1]

Your situation is so complicated, I don't know what to say, except that I feel for you and hope you resolve this. You mention how low your blood sugar goes, but what are your high numbers? The higher your blood sugar, the steeper and scarier the drop. You can get off the roller coaster by keeping your carbs to be about the same amount every time you eat and gradually reducing each intake of carbs, so there is less for your body to react to. Hopefully one of the members who have Reactive Hypoglycemia will respond to you soon.

 

[Lamont D]

Hi all. I hope everyone is doing well and finding their answers.


I’ve been struggling the past few years, and my situation is not as straight forward and a bit complicated. I’m hoping that by joining the forum, I’ll be able to get myself pointed in the right direction, find some answers and ultimately better my life.


I will try to cliff notes this as best as possible, but here’s my history:


Always had issues with fatigue, anxiety, depression, etc. Medication helped for a while but I started having really bizarre symptoms about 4 years ago that were horrifying but so vague, I was having trouble getting a diagnosis. (Fatigue, dizziness, weakness, anxiety, DPDR, tremors, etc.) To be honest, to this day, I don’t really know what is happening, or what multiple things are happening, but I do know at this point a huge trigger is my blood sugar.


About four years ago, I started having a lot of issues eating. As soon as I ate, my heart rate would jack-up, I’d feel sick, dizzy, and then ultimately absolutely exhausted afterwards as it “settled down”. Got tested for a million things including POTS, Lyme, vitamin deficiencies, stomach issues/bacteria, etc. All came back “normal”.


So I lived this way for a while. I was having severe acid reflux and ultimately had surgery to redirect my stomach (same as gastric bypass) about two years ago. The acid reflux resolved but as you can guess, the rest did not, and now everything was worse. (I never considered it being an issue because medical professionals were telling me it was not blood sugar related, as all my test and fasting came back ok, so I just trusted them).


Now I’m at a point where I feel like I’m going to lose my life. I am constantly tired, brain fog, and have severe anxiety, depression and dissociation. This was all *drastically* made worse by the fact that they put me on Xanax and antidepressants back when this started, and I had *severe* withdrawal when they pulled me off quickly. The medications were having a paradoxical effect on my body, especially my CNS, after a while and it was a lose-lose situation. Since then, almost every system has been affected. It’s my understanding that it can take years for the body and brain to regrow the damage done from psychiatric meds, and several affects the limbic and endocrine systems, which is what I believe is going on largely.


So, I have several things, if not all, I believe this could be, but don’t know. My current issue is basically that I have a baseline of just feeling like ****. I eat, and then it’s like a downhill slope from there. Carbs and sugars made it far worse, but I seem to get it with anything I eat. Once my blood sugar goes up, even ten, twenty points, it’s like I’m done for the day.


The odd thing is: rarely does my blood sugar go into severe hypo or hyper. Fasting levels are totally normal, yet I feel horrible. I feel a tiny bit better when I eat, for a short period, but often the act of eating seems to fire off my nervous system and make me anxious and severely fatigued. And when my blood sugar drops…it feels like I’m dying. As in, literally. It feels like I’m on a boat, I feel half asleep, can’t think, and have severe muscle weakness and agitation both physically and mentally. Sometimes I’ll start crying for no reason or feel incredibly angry. The doctors diagnosed me with reactive hypoglycemia, which makes sense with bypass surgery/dumping syndrome, but I had this for about two years before that as well.


I also don’t know if I have “actual” hypoglycemia since my numbers rarely fall below 70. It seems like my body just has an extreme reaction to *any* change in blood sugar, and more so to a drop, even if it’s still in normal numbers.


I feel completely lost. I want my life back. I don’t know the cause of all this or how to make it better. This “eat 8-9 times a day” isn’t logical and doesn’t really help, and I almost feel more tired because my body is *constantly* digesting. I get mixed messages on what to eat, how to eat, etc. I would like to try keto but am scared because if my fasting levels at 80-90 make me feel crummy, would that mean I need more carbs? But then how do I stop the roller coaster?


Doctors are no help and keep repeating the same tests and giving me the same advice, which is just Pinterest style charts of eating small meals more frequently, which doesn’t help. My body reacts to even the smallest changes.


I recently had vitamin levels checked and all were within normal range. A few on the lower end, but I’ve felt this way in the past when they were higher.


Some recent testing I had done (December) if it helps:


1. Insulin Antibodies (<0.4 u/ml)

2. Glutamic Acid Decarboxylase Antibodies (<5.0 iu/ml)

3. Fasting glucose level: 89

4. Thyroid Stim. Hormone (1.38 uiu/ml)

5. Insulin-Like Growth Factor 1 (141 ng/ml)

6. T3 (98 ng/dl)

7. ACTH (11 pg/mL)

8. HbA1c (4.7%)

9. EAG (88 mg/dl)

10. Insulin 4.9 uU/ml)


The one test I repeatedly get back as almost double or triple the levels is cortisol. I have almost severe panic in the morning with high cortisol levels, and then afternoon and night are in normal ranges. I don’t have any symptoms of Cushing’s or related conditions. I have heard that withdrawal can cause this imbalance in the body as well.


I have no idea what’s going on other than I’ve been told I have reactive hypoglycemia, possible dumping syndrome, and given basic info from doctors about diet that isn’t helping. I don’t understand why I’m having hypoglycemic symptoms when my levels are in the normal range. The drop/coming down is by far the worst and renders me bedbound at times.

I am currently 35, female, weigh 130 lbs at 5'5".


Thank you all for your time if you read this. Please help.

Wow!

Hi and welcome to our forum @Keatsy1987.
Where do I start?
I have the condition Reactive Hypoglycaemia.
You have all the symptoms of RH.
You may have RH, but a different type of hypoglycaemia, the awareness of having gastric dumping is a good start.
Having intolerance to food is nothing new to me, nor is the advice of having a million meals a day!
You might as well just eat pizza or drink vodka all day for the good that advice is!
The idea to have regular meals is to stop having hypos or the feeling of feeling ......!
But that is similar to pouring petrol on a fire!
Why?
Well, every time your quick digestion dumps glucose, your brain sends a message to your pancreas to create more insulin because that is how your body is use to get the energy levels requirements, the lack of initial first phase insulin, and possibly hormonal response including cortisol and other hormones will trigger this reaction!
The reaction is what caused the symptoms which is usually your blood glucose levels going up and down, like a roller coaster ride all day.
But I could stretch it to not actually having the episodes of hypoglycaemia, because I have heard similar stories of people having post prandial syndrome. Which has all the hallmarks of RH, without the hypos!

Yes, you get normal blood results, your fasting is in normal, but have you had a fasting test of an extended oral glucose tolerance test, a mixed meal test?
Doctors are not trained in hypoglycaemic conditions and stomach surgery and other conditions on top do not give a clear diagnosis, I have had to go through it all and experience, experiments, and read up, look up, gest, write it all down, soft through and decide if it is good or not!
After ten years (most!y) being hypo free, I have had enough knowledge now to eat wisely and healthy for me.
It will probably be different for you, but if you would like to read our forum, a very low carb diet or being in keto, will almost certainly relieve the symptoms, along with intermittent fasting, even one meal a day, will help.
RH is controllable, you just need to know, what food causes the reaction.

If you have RH, you create too much insulin, and probably other hormones. That is the key knowledge.

Keep asking, use a food diary and a glucometer and record everything!

Best wishes

 

[Keatsy1987]

Wow!

Hi and welcome to our forum @Keatsy1987.
Where do I start?
I have the condition Reactive Hypoglycaemia.
You have all the symptoms of RH.
You may have RH, but a different type of hypoglycaemia, the awareness of having gastric dumping is a good start.
Having intolerance to food is nothing new to me, nor is the advice of having a million meals a day!
You might as well just eat pizza or drink vodka all day for the good that advice is!
The idea to have regular meals is to stop having hypos or the feeling of feeling ......!
But that is similar to pouring petrol on a fire!
Why?
Well, every time your quick digestion dumps glucose, your brain sends a message to your pancreas to create more insulin because that is how your body is use to get the energy levels requirements, the lack of initial first phase insulin, and possibly hormonal response including cortisol and other hormones will trigger this reaction!
The reaction is what caused the symptoms which is usually your blood glucose levels going up and down, like a roller coaster ride all day.
But I could stretch it to not actually having the episodes of hypoglycaemia, because I have heard similar stories of people having post prandial syndrome. Which has all the hallmarks of RH, without the hypos!

Yes, you get normal blood results, your fasting is in normal, but have you had a fasting test of an extended oral glucose tolerance test, a mixed meal test?
Doctors are not trained in hypoglycaemic conditions and stomach surgery and other conditions on top do not give a clear diagnosis, I have had to go through it all and experience, experiments, and read up, look up, gest, write it all down, soft through and decide if it is good or not!
After ten years (most!y) being hypo free, I have had enough knowledge now to eat wisely and healthy for me.
It will probably be different for you, but if you would like to read our forum, a very low carb diet or being in keto, will almost certainly relieve the symptoms, along with intermittent fasting, even one meal a day, will help.
RH is controllable, you just need to know, what food causes the reaction.

If you have RH, you create too much insulin, and probably other hormones. That is the key knowledge.

Keep asking, use a food diary and a glucometer and record everything!

Best wishes

Hi Lamont,

Thank you for responding. A lot of info here to look over. The idea of postprandial adrenergic syndrome has certainly come to mind for me. To kind of add to this and respond to the other comment, my "highs" aren't all that high. I'd say after a super heavy carb/sugar meal, they get to maybe 220. That's if I totally pig out, but otherwise, I'd say they're in the 140-150 range or lower. not all that bad, but it seems like my body has an exaggerated response to it, possibly because of the speed of which everything is happening.

I have an upcoming appointment with an endocrinologist, but I'm a little nervous because I don't want to get all the basic tests, be told the same **** I know already. I have not yet had any mixed meal or advanced glucose testing, and I hope they do this. I also have a barium test on Wednesday, so I'm hoping that will shed some light on how much gastric emptying is contributing. If it's just ridiculous, I'm about ready to have this surgery reversed and find another way to deal with the reflux. The problem is, I started having this even before the surgery. Argh.

Quick questions you or someone else might know:

1. Can excess cortisol mess up your insulin response/cause hypoglycemia issues?
2. Could you by chance give me a sample day of what you eat? (Or just link me if you posted it elsewhere, I've read a lot of posts but don't see this particular one.)
3. They suggested Octreotide. Anyone have any experience with this?
4. I keep getting told me "need carbs for our brain" so I'm afraid to go keto, but the ups and downs are torture. Is keot still a feasible option if we have constant hypo symptoms or should I just be plying my body with carbs and sugar?

Thanks all, and happy to answer more questions if needed. Right now I'm trying to figure out how to do this safely.

 

[Keatsy1987]

Your situation is so complicated, I don't know what to say, except that I feel for you and hope you resolve this. You mention how low your blood sugar goes, but what are your high numbers? The higher your blood sugar, the steeper and scarier the drop. You can get off the roller coaster by keeping your carbs to be about the same amount every time you eat and gradually reducing each intake of carbs, so there is less for your body to react to. Hopefully one of the members who have Reactive Hypoglycemia will respond to you soon.

Not that high, usually. I'd say after a super heavy carb meal, they can get to like 220, but that's rare. On a daily basis, I'd say I run between 120-150 after meals. It's not that high but I can definitely feel it when it drops.

 

[Lamont D]

Hi Lamont,

Thank you for responding. A lot of info here to look over. The idea of postprandial adrenergic syndrome has certainly come to mind for me. To kind of add to this and respond to the other comment, my "highs" aren't all that high. I'd say after a super heavy carb/sugar meal, they get to maybe 220. That's if I totally pig out, but otherwise, I'd say they're in the 140-150 range or lower. not all that bad, but it seems like my body has an exaggerated response to it, possibly because of the speed of which everything is happening.

I have an upcoming appointment with an endocrinologist, but I'm a little nervous because I don't want to get all the basic tests, be told the same **** I know already. I have not yet had any mixed meal or advanced glucose testing, and I hope they do this. I also have a barium test on Wednesday, so I'm hoping that will shed some light on how much gastric emptying is contributing. If it's just ridiculous, I'm about ready to have this surgery reversed and find another way to deal with the reflux. The problem is, I started having this even before the surgery. Argh.

Quick questions you or someone else might know:

1. Can excess cortisol mess up your insulin response/cause hypoglycemia issues?
2. Could you by chance give me a sample day of what you eat? (Or just link me if you posted it elsewhere, I've read a lot of posts but don't see this particular one.)
3. They suggested Octreotide. Anyone have any experience with this?
4. I keep getting told me "need carbs for our brain" so I'm afraid to go keto, but the ups and downs are torture. Is keot still a feasible option if we have constant hypo symptoms or should I just be plying my body with carbs and sugar?

Thanks all, and happy to answer more questions if needed. Right now I'm trying to figure out how to do this safely.

Hi again, if you were already experiencing symptoms before surgery, then the likelihood that surgery has exacerbated the the hormonal response and the glucose dumping is a result of the shortening time of digestion.
If no one else has suggested, as your dietary change must happen, more saturated natural good fats will help with slowing digestion.
I wake up and don't eat till around mid afternoon, which is probably a ham salad, then another meal before 7pm, which is usually a roast meat, or a low carb chicken curry, or a fry up, such as bacon or gammon, eggs, sausage, mushrooms, tomatoes, onions. All my frying is done in natural fats not vegetable oils or plant based oils. Production foods are not to be eaten, just full of sugar and additives. I don't eat again. Lots of black tea, as I'm lactose intolerant. Water about two litres a day.
It sounds awful, but you do have other options. Have a look at dietdoctor.com or our own low carb forum.

1. I'm not certain, but everything impacts on glucose/insulin response. If the cortisol increases insulin, then hypoglycaemia is probable, unless it is so small, it won't have an effect.
2.As above. But do search dietdoctor if you are determined to go keto.
3. No idea but I have no need for anything like it.
4. Oh, my god, not another load of absolute rubbish!
Scenario; a keto dieter, has a very busy day, fasting, no time for food, no time to drink. Does he need glucose for brain function?
Scenario. A person has no access to food for a couple of days, only has water, does he suffer from brain function?
Scenario. Me! I was given a fasting testing in hospital, no food for four days, just water. What happens?
Answers.
1. No.
2. No.
3. Nowt. I do eat every day for nutriients, nothing else, I get my energy from stored fat and ketones, I don't need glucose from carbs and being in keto, my energy levels are really high, I don't feel hunger I am never tired until I decide I need sleep, I sleep better and more relaxed. The positives of being in control and in normal levels all the time is really good.
And the symptoms are much less, the longer you are in keto. Being in keto, is the best treatment for RH.
You do not need glucose for brain function, in fact, for me, my brain function is better without food entirely.
This is my experience after a decade after diagnosis.
Previous to this, same advice as you. Just kept getting worse, more problems, more symptoms, worse memory loss and brain fug!

If you want to look after your health better, I have been through it all, done everything possible from advice from doctors.
Most of them have never experienced hypoglycaemia.
They have been trained in general practitioner role which doesn't include hypoglycaemia
The treatment of many meals and eating complex carbs is not fixing the problem, only not having the trigger for more insulin is the answer. Simply put, no carbs, no hypers, no hypos!

I hope you can understand that.


Keep asking, Keep reading up, start experimenting.

 

[Keatsy1987]

Hi again, if you were already experiencing symptoms before surgery, then the likelihood that surgery has exacerbated the the hormonal response and the glucose dumping is a result of the shortening time of digestion.
If no one else has suggested, as your dietary change must happen, more saturated natural good fats will help with slowing digestion.
I wake up and don't eat till around mid afternoon, which is probably a ham salad, then another meal before 7pm, which is usually a roast meat, or a low carb chicken curry, or a fry up, such as bacon or gammon, eggs, sausage, mushrooms, tomatoes, onions. All my frying is done in natural fats not vegetable oils or plant based oils. Production foods are not to be eaten, just full of sugar and additives. I don't eat again. Lots of black tea, as I'm lactose intolerant. Water about two litres a day.
It sounds awful, but you do have other options. Have a look at dietdoctor.com or our own low carb forum.

1. I'm not certain, but everything impacts on glucose/insulin response. If the cortisol increases insulin, then hypoglycaemia is probable, unless it is so small, it won't have an effect.
2.As above. But do search dietdoctor if you are determined to go keto.
3. No idea but I have no need for anything like it.
4. Oh, my god, not another load of absolute rubbish!
Scenario; a keto dieter, has a very busy day, fasting, no time for food, no time to drink. Does he need glucose for brain function?
Scenario. A person has no access to food for a couple of days, only has water, does he suffer from brain function?
Scenario. Me! I was given a fasting testing in hospital, no food for four days, just water. What happens?
Answers.
1. No.
2. No.
3. Nowt. I do eat every day for nutriients, nothing else, I get my energy from stored fat and ketones, I don't need glucose from carbs and being in keto, my energy levels are really high, I don't feel hunger I am never tired until I decide I need sleep, I sleep better and more relaxed. The positives of being in control and in normal levels all the time is really good.
And the symptoms are much less, the longer you are in keto. Being in keto, is the best treatment for RH.
You do not need glucose for brain function, in fact, for me, my brain function is better without food entirely.
This is my experience after a decade after diagnosis.
Previous to this, same advice as you. Just kept getting worse, more problems, more symptoms, worse memory loss and brain fug!

If you want to look after your health better, I have been through it all, done everything possible from advice from doctors.
Most of them have never experienced hypoglycaemia.
They have been trained in general practitioner role which doesn't include hypoglycaemia
The treatment of many meals and eating complex carbs is not fixing the problem, only not having the trigger for more insulin is the answer. Simply put, no carbs, no hypers, no hypos!

I hope you can understand that.


Keep asking, Keep reading up, start experimenting.

Totally understand all of this. I'm going to check out the website you linked me to, and really put some effort into diet.

 

[SarahTee]

@Keatsy1987

I know you mentioned being tested for POTS, but did they look at other autonomic disorders?

Octreotide is used to treat some autonomic disoders so I am wondering if that is why it was suggested.

(I have an autonomic disorder. Octreotide helps by reducing postprandial abdominal pooling – too much blood rushing to the abdomen after eating. I have considered it myself, but it is a risky drug to take. It can cause very serious gall bladder problems so it is only used in patients who are bedbound or fainting frequently or otherwise very seriously ill.)