Newly diagnosed with RH

[Emerson]

Hello,
I was diagnosed with reactive hypoglycemia around 3 weeks ago. I have read through a lot of posts on this forum (that's been so helpful!) And I think I've been quite lucky getting a quick diagnosis. I had my first hypo requiring hospital treatment in February this year. My Endocrinologist has recommended a low GI diet which I tried for a couple of weeks but my symptoms didn't improve. The main symptoms were brain fog, confusion, unable to find words, feeling sick and completely exhausted. After reading a lot of posts on this forum (thank you!) I realised I wasn't alone and also that I should try cutting out carbs and sugar completely. I have done this for the past five days and I cannot believe how much of difference this has made. My cognitive symptoms have more or less disappeared.I would like to know what other people have experienced with gaining control of their RH after diagnosis and how long it took to get their lives back to normal again? I am still suffering from fatigue and wondered if this is common and if there are there are any tips to help the process?
Thanks for taking the time to read this.
Best, Mary

 

[Lamont D]

Hello,
I was diagnosed with reactive hypoglycemia around 3 weeks ago. I have read through a lot of posts on this forum (that's been so helpful!) And I think I've been quite lucky getting a quick diagnosis. I had my first hypo requiring hospital treatment in February this year. My Endocrinologist has recommended a low GI diet which I tried for a couple of weeks but my symptoms didn't improve. The main symptoms were brain fog, confusion, unable to find words, feeling sick and completely exhausted. After reading a lot of posts on this forum (thank you!) I realised I wasn't alone and also that I should try cutting out carbs and sugar completely. I have done this for the past five days and I cannot believe how much of difference this has made. My cognitive symptoms have more or less disappeared.I would like to know what other people have experienced with gaining control of their RH after diagnosis and how long it took to get their lives back to normal again? I am still suffering from fatigue and wondered if this is common and if there are there are any tips to help the process?
Thanks for taking the time to read this.
Best, Mary

Hi Mary, and welcome to the forum.
I think you have found out that low GI, just won't help. To help with understanding the condition, I have referred it to being carb intolerant. Which means that any carbs above a certain level (very low) will cause the trigger.
It is only three weeks and some of that you were still eating carbs, so the process to be zero carb (ish) will take a little more time. My own experience was during a fasting test, when waking, second morning, I had an unbelievable amount of energy, it was something like, when running around as a kid, playing footie or street games.
You probably have read, that intermittent fasting does help along with the very low carb or zero. Even if you intend going keto, it will take time for your body to adjust. A few days at least.
Back to normal?
I don't think, I could even think about being normal, it's not me!
We have a rare condition, the majority of people (high 99%) don't create too much insulin. (An overshoot) and our livers fail to boost glucose levels. Hence the hypos.
So for me, normal is not what I am!
However, you will feel much like your old self once you have found the dietary balance, that doesn't cause the trigger, and the control of your blood glucose levels is in or around normal levels more often continuously.

Learning the ins and outs about RH and understanding, what happens after eating. The treatment is avoiding the foods that triggers the reactive part.

Best wishes, keep asking, again welcome to the forum.
Being nosey, what tests have you had?

 

[Emerson]

Thanks for your swift reply, much appreciated!
That's really helpful.
I had a similar experience with a fasting test too, it was only for 24 hours but I felt better during it than I'd felt for months which made me skeptical about the advice to eat every few hours.
I suppose I was asking how long it took to feel like yourself again rather than being normal. I know I'll never be that either!
I've had a mixed meal test, during which I didn't actually feel too bad but from the results I had a hypo but didn't actually know it. I keep regular check on my blood sugar levels because of this and they've certainly stabilised since going sugar and carb free. I'm following a keto diet now which is going well.
I also had a short synacthen test for addison's disease. I'm due to have an MRI with contrast on my pancreas this week to rule out an insulinoma. I'm also due another blood test for cealiac disease. I want to know if my RH has a cause but I know that we may never know!

 

[Lamont D]

Hi again,

Thanks for your swift reply, much appreciated!
That's really helpful.
I had a similar experience with a fasting test too, it was only for 24 hours but I felt better during it than I'd felt for months which made me skeptical about the advice to eat every few hours.
I suppose I was asking how long it took to feel like yourself again rather than being normal. I know I'll never be that either!
I've had a mixed meal test, during which I didn't actually feel too bad but from the results I had a hypo but didn't actually know it. I keep regular check on my blood sugar levels because of this and they've certainly stabilised since going sugar and carb free. I'm following a keto diet now which is going well.
I also had a short synacthen test for addison's disease. I'm due to have an MRI with contrast on my pancreas this week to rule out an insulinoma. I'm also due another blood test for cealiac disease. I want to know if my RH has a cause but I know that we may never know!

I would have thought that a fasting extended oral glucose tolerance would be amongst those tests. For years I knew there was something wrong and I had no idea about having hypos until I was told what was happening to me. The hypo awareness will come, the more you are in normal levels. The symptoms will come back as the rollercoaster of blood glucose levels will make themselves known.
Eating every few hours is counter productive, this is a way to control the hypos, however, and I asked many doctors why, when it was possible to control it without e persistently filling your stomach. Especially with carbs!!! It didn't make sense!
But, you must have a source of glucose for your brain to function?????.
When you already have brain fog, wouldn't that just compound the brain fog? Also, if someone can't eat regularly because of lack of food, doesn't mean that the brain won't work! As your body automatically helps you through it!
The argument against eating all day every three hours, then, have never really understood the scientific evidence of what happens.
The cause, simply as possible, is carbs and sugars.
But what happens is, you eat carbs, your insulin response is weak, for maybe a couple of reasons, mainly insulin resistance. That causes an unusual spike in your BG levels, which is the trigger for the pancreas to over produce insulin (the overshoot), which in turn drives down your BG levels into hypoglycaemia. Add to that your liver doesn't produce enough glucose from glucogenisis to arrest the insulin overproduction.
So with this knowledge, it makes it logical not to eat any carbs, so you stop the spike, which in turn prevents the overshoot, which then means no hypo. And no rollercoaster ride of BG levels. And no horrible symptoms!

I am glad that you are getting the MRI, to see if you have insulinoma. I had mine done a few times, I just wonder if they might be looking for a fatty liver or kidney? How was your liver and kidney function tests?

It wouldn't surprise me that your health improves whilst in keto.

Just to let you know, when first diagnosed, I was called weird by my GP, and verified by my endocrinologist, so I'm not normal..............
I'm special!

Keep asking, keep safe.
Best wishes

 

[Sharra]

I had reactive hypoglycemia that got steadily worse over 15 years. (I didn't really understand what it was). I used to always carry sweets around with me.
Then I was diagnosed with diabetes. I immediately did low carb to control blood sugar, but still got occasional hypos.
When I switched to keto, they totally stopped.

 

[Lamont D]

I had reactive hypoglycemia that got steadily worse over 15 years. (I didn't really understand what it was). I used to always carry sweets around with me.
Then I was diagnosed with diabetes. I immediately did low carb to control blood sugar, but still got occasional hypos.
When I switched to keto, they totally stopped.

I know that medical training and treatment advice everywhere you research are not logical to the actual science of the condition. RH scientifically means that we cannot tolerate carbohydrate in any form. Which in layman's terms, like I was advised at a very young age, that being lactose intolerant, to not eat dairy.
What is the difference between lactose intolerance and carb intolerance?A
Nothing!
My endocrinologist listened to me, so did my GP 'sees and my dsn'sss.
Once again, I have a new named GP! Into double figures now since the turn of the century!
Keep safe.

 

[Lynnzhealth]

Hi again,

I would have thought that a fasting extended oral glucose tolerance would be amongst those tests. For years I knew there was something wrong and I had no idea about having hypos until I was told what was happening to me. The hypo awareness will come, the more you are in normal levels. The symptoms will come back as the rollercoaster of blood glucose levels will make themselves known.
Eating every few hours is counter productive, this is a way to control the hypos, however, and I asked many doctors why, when it was possible to control it without e persistently filling your stomach. Especially with carbs!!! It didn't make sense!
But, you must have a source of glucose for your brain to function?????.
When you already have brain fog, wouldn't that just compound the brain fog? Also, if someone can't eat regularly because of lack of food, doesn't mean that the brain won't work! As your body automatically helps you through it!
The argument against eating all day every three hours, then, have never really understood the scientific evidence of what happens.
The cause, simply as possible, is carbs and sugars.
But what happens is, you eat carbs, your insulin response is weak, for maybe a couple of reasons, mainly insulin resistance. That causes an unusual spike in your BG levels, which is the trigger for the pancreas to over produce insulin (the overshoot), which in turn drives down your BG levels into hypoglycaemia. Add to that your liver doesn't produce enough glucose from glucogenisis to arrest the insulin overproduction.
So with this knowledge, it makes it logical not to eat any carbs, so you stop the spike, which in turn prevents the overshoot, which then means no hypo. And no rollercoaster ride of BG levels. And no horrible symptoms!

I am glad that you are getting the MRI, to see if you have insulinoma. I had mine done a few times, I just wonder if they might be looking for a fatty liver or kidney? How was your liver and kidney function tests?

It wouldn't surprise me that your health improves whilst in keto.

Just to let you know, when first diagnosed, I was called weird by my GP, and verified by my endocrinologist, so I'm not normal..............
I'm special!

Keep asking, keep safe.
Best wishes

I'm not hypoglycemic, as such, but I thought I'd tell you that I was first dx'd with T2, two years later I had a DKA episode, spending 4 days in ER. Then it was determined that I was T1. The two specialists scratched their heads in wonder. And, they said I'm unique (probably meant weird). So, I'm special, too.

And, I have done Keto/low carb since 2017. Somedays my BG goes high and sometimes drops like a rock. I'm never quite sure what it's going to do. Having bariatric surgery 43 years ago probably doesn't help. All my blood results have been great since then.

I thought your last few lines were funny, seeing as how we're both 'special'.

Good luck,

Lynn

 

[Lamont D]

I'm not hypoglycemic, as such, but I thought I'd tell you that I was first dx'd with T2, two years later I had a DKA episode, spending 4 days in ER. Then it was determined that I was T1. The two specialists scratched their heads in wonder. And, they said I'm unique (probably meant weird). So, I'm special, too.

And, I have done Keto/low carb since 2017. Somedays my BG goes high and sometimes drops like a rock. I'm never quite sure what it's going to do. Having bariatric surgery 43 years ago probably doesn't help. All my blood results have been great since then.

I thought your last few lines were funny, seeing as how we're both 'special'.

Good luck,

Lynn

It is now common after bariatric surgery or similar that certain aspects of our digestion alter, so it affects how our hormones/ organs respond to our lifestyles.
And the more extreme of us who get the doctors saying such things as 'special '!

Otherwise, How could we have those special people, who were in the circus side shows many years ago.

The diabetes umbrella of so many different types and individuality, is something that have stumped the medical profession for so long, with, the treatment being just as bad as the understanding of how the individual conditions and the individuality of each person's circumstances, environment, affordability with their ethnicity.
It is complicated because one size does not fit all!

I believe finding your own balance of dietary requirements are a huge part of treatment with your individual conditions.

Stay safe.