Possible RH looking for advice on diagnostics

[JBurt]

Hello!

I am so happy I found this forum and appreciate the wealth of information from everyone here.

I suspect I have RH and have for quite some time. I experience the telltale symptoms of lows and have had low blood sugar appear on several random blood glucose tests over the years (ranging from 2.9-3.8 on non-fasting tests).

My problem is RH seems to be completely unheard of where I am from, and my physician is very unfamiliar. She recognizes that low blood sugar in someone without diabetes is rare and has told me she is researching what tests we can do to further investigate what's going. I am wondering if you can share what tests aided in your diagnosis so when I meet with her next I can make sure we are taking the right approach.

I am often alone with my 2 year old and am having a lot of anxiety about having severe hypos while no one else is around to care for her if something happens to me, so I am VERY eager to get a diagnosis and hopefully a monitoring plan in place. Right now I do try to eat something fast acting if I feel off but I am flying blind and not a fan of managing things this way.

Thanks for your help

 

[JoKalsbeek]

Hello!

I am so happy I found this forum and appreciate the wealth of information from everyone here.

I suspect I have RH and have for quite some time. I experience the telltale symptoms of lows and have had low blood sugar appear on several random blood glucose tests over the years (ranging from 2.9-3.8 on non-fasting tests).

My problem is RH seems to be completely unheard of where I am from, and my physician is very unfamiliar. She recognizes that low blood sugar in someone without diabetes is rare and has told me she is researching what tests we can do to further investigate what's going. I am wondering if you can share what tests aided in your diagnosis so when I meet with her next I can make sure we are taking the right approach.

I am often alone with my 2 year old and am having a lot of anxiety about having severe hypos while no one else is around to care for her if something happens to me, so I am VERY eager to get a diagnosis and hopefully a monitoring plan in place. Right now I do try to eat something fast acting if I feel off but I am flying blind and not a fan of managing things this way.

Thanks for your help

Reactive hypoglycemia happens when you eat carbs, your blood glucose spikes, your pancreas overreacts, pumping out more insulin than you need, and boom, you hypo. If you can avoid the spikes (by eating a low carb diet), you also avoid the lows. Just something that might come in handy to know, if you're diagnosed.

The test you're looking for is an Extended Oral Glucose Tolerance Test, also known as a eOGTT. Make sure you get the extended one, or the hypo, if it is RH, might happen when you're on your way home. The short version just might be too short.

Good luck!
Jo

 

[KennyA]

@Lamont D

Hi and welcome. I'm tagging in a member with lots of RH experience.....

 

[Lamont D]

Hello!

I am so happy I found this forum and appreciate the wealth of information from everyone here.

I suspect I have RH and have for quite some time. I experience the telltale symptoms of lows and have had low blood sugar appear on several random blood glucose tests over the years (ranging from 2.9-3.8 on non-fasting tests).

My problem is RH seems to be completely unheard of where I am from, and my physician is very unfamiliar. She recognizes that low blood sugar in someone without diabetes is rare and has told me she is researching what tests we can do to further investigate what's going. I am wondering if you can share what tests aided in your diagnosis so when I meet with her next I can make sure we are taking the right approach.

I am often alone with my 2 year old and am having a lot of anxiety about having severe hypos while no one else is around to care for her if something happens to me, so I am VERY eager to get a diagnosis and hopefully a monitoring plan in place. Right now I do try to eat something fast acting if I feel off but I am flying blind and not a fan of managing things this way.

Thanks for your help

Hi, and welcome to our forum.

I will take you through which tests led to my diagnosis. And it is no surprise that many GP's have not heard of many hypoglycaemic conditions other than the diabetic reasons.
First of all. I was told by my specialist endocrinologist, to keep a good diary and using a glucometer monitor, and record all my fasting levels, my pre meal and two hours after readings. You dietary intake, the portion size and anything you believe important for instance, a cold or such.
There is no absolute diagnostic test to diagnose RH
A full blood panel test. Usually to check hba1c, or something that could change the blood results
The next test is usually a mixed meal test. Obviously to find allergic reactions, intolerance, though these may be seperate.
Then, an extended oral glucose tolerance test. Fasting. Under supervision. Standard glucose of 75g. A cannula is fitted to take phials of blood for lab testing, c-peptide, GAD. Also if not CGM, blood monitor testing every half hour.
If you go hypo, this will eliminate, other pancreatic conditions. All the tests are elimination tests.
The final test is again in hospital under supervision. It is an actual 72 hours fasting test, to see if you go hypo when fasting. If you don't go hypo whilst fasting, then you probably have RH.
My condition is known as RH, but it has been clinically called, Non diabetic Late Reactive Hypoglycaemia.

You need to know which foods cause the hypos. By using your food diary and monitor.
If a meal, with your pre meal reading, just not be more than 2mmols higher than the pre meal reading otherwise something in that meal will cause the reactive part of the condition.
If and when you go hypo, you must be aware, of treating the hypo too much, known as the rebound effect. If you spike again, you will trigger the reaction. So what I do, is have a low carb small meal, maybe a couple of bites, say cheese and check again after fifteen minutes. Otherwise your blood glucose levels will be in a rollercoaster ride all day.

What country you from? Just nosey!

Best wishes.

 

[JBurt]

Reactive hypoglycemia happens when you eat carbs, your blood glucose spikes, your pancreas overreacts, pumping out more insulin than you need, and boom, you hypo. If you can avoid the spikes (by eating a low carb diet), you also avoid the lows. Just something that might come in handy to know, if you're diagnosed.

The test you're looking for is an Extended Oral Glucose Tolerance Test, also known as a eOGTT. Make sure you get the extended one, or the hypo, if it is RH, might happen when you're on your way home. The short version just might be too short.

Good luck!
Jo

Thanks for the info!

 

[JBurt]

Hi, and welcome to our forum.

I will take you through which tests led to my diagnosis. And it is no surprise that many GP's have not heard of many hypoglycaemic conditions other than the diabetic reasons.
First of all. I was told by my specialist endocrinologist, to keep a good diary and using a glucometer monitor, and record all my fasting levels, my pre meal and two hours after readings. You dietary intake, the portion size and anything you believe important for instance, a cold or such.
There is no absolute diagnostic test to diagnose RH
A full blood panel test. Usually to check hba1c, or something that could change the blood results
The next test is usually a mixed meal test. Obviously to find allergic reactions, intolerance, though these may be seperate.
Then, an extended oral glucose tolerance test. Fasting. Under supervision. Standard glucose of 75g. A cannula is fitted to take phials of blood for lab testing, c-peptide, GAD. Also if not CGM, blood monitor testing every half hour.
If you go hypo, this will eliminate, other pancreatic conditions. All the tests are elimination tests.
The final test is again in hospital under supervision. It is an actual 72 hours fasting test, to see if you go hypo when fasting. If you don't go hypo whilst fasting, then you probably have RH.
My condition is known as RH, but it has been clinically called, Non diabetic Late Reactive Hypoglycaemia.

You need to know which foods cause the hypos. By using your food diary and monitor.
If a meal, with your pre meal reading, just not be more than 2mmols higher than the pre meal reading otherwise something in that meal will cause the reactive part of the condition.
If and when you go hypo, you must be aware, of treating the hypo too much, known as the rebound effect. If you spike again, you will trigger the reaction. So what I do, is have a low carb small meal, maybe a couple of bites, say cheese and check again after fifteen minutes. Otherwise your blood glucose levels will be in a rollercoaster ride all day.

What country you from? Just nosey!

Best wishes.

Thank you so much for all of the testing information! I'll discuss those tests with my doctor when I see her next. She seems reluctant to have me monitoring in the meantime, so I've been thinking of just paying out of pocket for now so I can track things as you suggest. Going to stop by my pharmacy today and see what my options are.

I'm from the east coast of Canada! I tried to find a similar forum on a Canadian site but there doesn't seem to be much so I was really pleased to see I could join here and get some support/ask questions.

 

[Lamont D]

Go back a decade. And I was in a similar situation and I scoured every site I could find to get some answers that even my endo wasn't certain. This site had one unconfirmed patient with all the symptoms but with T2 as well!
This poster, guided, corrected, answered my many questions. And gave me so much information along with my own trial and testing, and with my endo, came forward for a plan.
Then we asked for our own forum and like a lot of people continue to learn and be open minded about how to approach the condition. But the difference in types and causes are usually different for everyone of us!

And of course, medical science is still in the dark ages, regarding these conditions.
No major trial or research has been done, and of course there is no magic pill or cure.
A rare condition that has no medical diagnostic test to confirm it, only a series of elimination tests, to confirm it's not other conditions.

Ask away, I'm certain you have many more questions!
Good luck with your doctor. I usually advise getting a referral to a specialist endocrinologist who has experience and knowledge with similar Hypoglycaemic conditions. But I'm not certain how it works in Canada. I'm on the west coast of U.K. Getting battered by a big storm today. So just going through some stuff because I can't get in the garden to relax.

Best wishes.

 

[JBurt]

Go back a decade. And I was in a similar situation and I scoured every site I could find to get some answers that even my endo wasn't certain. This site had one unconfirmed patient with all the symptoms but with T2 as well!
This poster, guided, corrected, answered my many questions. And gave me so much information along with my own trial and testing, and with my endo, came forward for a plan.
Then we asked for our own forum and like a lot of people continue to learn and be open minded about how to approach the condition. But the difference in types and causes are usually different for everyone of us!

And of course, medical science is still in the dark ages, regarding these conditions.
No major trial or research has been done, and of course there is no magic pill or cure.
A rare condition that has no medical diagnostic test to confirm it, only a series of elimination tests, to confirm it's not other conditions.

Ask away, I'm certain you have many more questions!
Good luck with your doctor. I usually advise getting a referral to a specialist endocrinologist who has experience and knowledge with similar Hypoglycaemic conditions. But I'm not certain how it works in Canada. I'm on the west coast of U.K. Getting battered by a big storm today. So just going through some stuff because I can't get in the garden to relax.

Best wishes.

I can see through scouring the forum that you provide many with that same guidance. You are very much appreciated!

At this moment, I just want to get a documented look at what my body is doing. So your pinned post on monitoring is extremely helpful. I did manage to get my hands on a kit today and am going to start keeping a diary. From there I'm sure the questions will start piling up lol.

Stay safe in that big storm!

 

[Lamont D]

I can see through scouring the forum that you provide many with that same guidance. You are very much appreciated!

At this moment, I just want to get a documented look at what my body is doing. So your pinned post on monitoring is extremely helpful. I did manage to get my hands on a kit today and am going to start keeping a diary. From there I'm sure the questions will start piling up lol.

Stay safe in that big storm!

Thanks!
I believe if you are serious about your health and as you say, you want to know why your body is doing this.
You have to have the knowledge to know your body.
With those details, the treatment becomes as important, control is crucial, and most of all, not feeling awful is the best reason of all.
And, when your energy levels come back as you remember them. It is a really great feeling!

Keep asking, keep well.

Best wishes