suspected RH

Hi and welcome!

Well done for working your way through the system far enough to get to an Endo, and have a 5 hour OGTT!
That is no small achievement.

and yes, going that low (1.6 is pretty brutal), @ghost_whistler experienced the same thing just a few days ago, so I expect he can relate!

Hope the results of the tests give you more information and can help sort this out for you.

LoBright4 said:

Hello all
I am new to this forum
a bit of background info
i am currently 19 year old male and underweight
my last HB1AC was 45mmol/mol in march 2016
i was told by a practice nurse to reduce the amount of sugary foods
a few days later i had a hypo and fainted
i was then referred to an endocrinologist and had a prolonged OGTT it was 5 hours, prior fasting overnight
my results are as shown
at start 0 hours 4.1mmol/l
took a glucose drink
30 mins 5.9mmol/l
60 mins 7.5mmol/l
90 mins 6.7mmol/l
120 mins 4.4mmol/l
150 mins 3mmol/l
180 mins 1.6mmol/l at this point i felt so drowsy and thought i was going to faint as i felt lightheaded
210 mins 2.4mmol/l
240 mins 3.3mmol/l
270 mins 3.0 mmol/l
300 mins 3.3mmol
i am going to see the endocrinologist in two weeks time to find out more info and weather i should start monitoring my blood sugar levels and the times i have hypo are rare
had one in October and three last month even after i ate breakfast of porridge
i am also waiting to be referred to a dietition to see if going low gi will help reduce the chances of it occurring.
i might just have an overactive thyroid

wow i can write alot

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Hi, and welcome to our forum.
Not fun those prolonged OGTT!
That's reads like mine but my first OGTT and subsequent ones were much higher than your spike.
Yes, it does read like some form of Hypoglycaemia.
Hope you get a good endocrinologist, it would mean you get more tests.
These will be used to eliminate other conditions.
The dietary issue is complex and you might not get satisfaction going low GI, because that would still have you eating carbs, which exacerbate your symptoms.
In my experience, you would be better following a very low carb diet and swerving those foods which causes your symptoms.
Do have a read of our forum, there is plenty of information and advice about controlling the condition.
If you are not sure of some things and need questions asked.
One of us will be around.
Best wishes.

LoBright4 said:

had a prolonged OGTT it was 5 hours

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It may have been even more insightful if they have included your insulin response over the 5 hours.

kokhongw said:

It may have been even more insightful if they have included your insulin response over the 5 hours.

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I have never heard of tests for insulin response being offered on the NHS in the UK.

kokhongw said:

It may have been even more insightful if they have included your insulin response over the 5 hours.

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In a prolonged glucose test, the sudden spikes and troughs show insulin response from how the graph is tracked. The reason is it a five hour test is because a RH er like me, doesn't got hypo until after three and a half hour onwards, even later.

There is an expensive test to show how high your insulin is, and they use c-peptide test to test for certain conditions which includes how your beta cells are doing!

Sorry, been really busy!

Please, let us know how you got on and your endocrinologist advice.

If you need more questions asked please do!

Again sorry, so busy!

LoBright4 said:

No worries

My Endocrinologist said that i should eat every 3 hours and eat complex carbs,so no fast foods and sugar foods
My Endocrinologist also said that i should moniter my blood glucose levels with a glucometer when i experience a hypo and note it down
My GP is able to prescribe me with more glucose strips when they run out.
I am also going to see a dietition soon at the hospital the date hasnt been booked yet.

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Yeah, thanks for that!
That definitely sounds like my endocrinologist. And if you are eating the complex carbs then you do need to eat every three hours.
Do you understand why this is so?
In my experience, the smaller the meals the better!
Instead of having three main meals, you could find yourself having six or seven.
So a bite or two will reduce the calories and restrict the amount of carbs you eat!
If you have weight issues, the low carb approach, will kick start that.

If you can get hold of some more test strips, then start experimenting and testing.
A food diary is an essential part of how you find out which foods are baddies.
If you don't know how to test, have a look at the sticky at the top of our forum page.
When you do your food diary, amount of food including carbs and calories if possible, pre meal reading, one hour after and two hours, after a while, you may try to find your spike, doing a home test like an OGTT, testing every quarter of a hour.
The idea of a food diary is to see trends over time and if your body is adapting to your diet.

With RH, the need to not release excess insulin response is the key to controlling the condition. With diet being the best treatment, the amount of carbs you have is crucial in not first having a hyper, then a hypo!
No hyper, no hypo. My last hypo was nearly three years ago during my last OGTT.
Control is key.

Keep asking.

And welcome again to our weird and unique club!

LoBright4 said:

ohh i do not know why the fact i am moving to complex carbs means i have to eat every three hours!! i am intrigued
my weight issue is that i am underweight
a nurse demonstrated how to use the glucometer
ahh fair thanks for the info about doing like a ogtt at home but my issue is that i dont have alot of needles at the moment
wow that is impressive!!! hats off to you

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To understand Hypoglycaemia, you have an unusual trigger that's releases too much insulin from your pancreas to your blood to use the glucose from your meals, in normal people, the balance between glucose and insulin is good, but because you have an imbalance, too much insulin, that's why you get hypos.
You probably have hyperinsulinaemia, which means too much insulin.
You probably have insulin resistance.
But I could be wrong, I'm going with what my experience was.

The three hours is because that is how long it usually takes for a meal of carbs to get back to normal levels before you go down to hypo levels. But this could be too long in some cases! Three hours worked for me!
After eating as shown by your prolonged OGTT, you rise quickly (hyper) to your spike, usually within 45 minutes but we are all different and finding your spike is good to know. By two hours your blood levels should just above your pre meal reading.
By three hours you will be going in hypo levels, so eating is necessary to raise your blood glucose levels back up.
Many medical practitioners advise complex carbs because of many reasons but I have discovered that carbs are carbs and my tolerance to them is real and I try to do without them because I feel better without them. That is the reason why I avoid the hypos and I only eat three small meals a day!
You have to find your own way to get control due to your tastes, likes and dislikes with finding out your tolerance to certain types of foods.
Mine are the usual suspects, starchy vegetables, grains, milk, sugar literally anything ending in ose when digested!

Keep asking as knowledge is Important.

LoBright4 said:

ohh i do not know why the fact i am moving to complex carbs means i have to eat every three hours!! i am intrigued

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Complex carbs may help a little, because it generally gets a more gentle insulin response.

Alternatively consider a fats friendly diet, because dietary fats has the lowest insulin response.

We may also view hypo symptoms as essentially our brain sending out distress signals when it is unable to get sufficient fuel. And due to insulin resistance, many of our brains have impaired glucose uptake. That means even in the presence of normal glucose levels 4.0-5.0 mmol it is not unusual for our brains to think there is not enough...Hence the suggestion to consider adding virgin coconut oil or MCT oil depending on the availability...

As @kokhongw says fats will help.
They slow digestion so your spike is offset, but you have to find the levels you need to balance the amount of complex carbs.
In my experience, I just don't bother with carbs as much as possible.
Some vegetable oils are not liked by my body, I use animal fats to satiate my body.
Fats, like full fat dairy will help with the hunger pangs and you feel full for longer!

LoBright4 said:

I am stuck thinking what drinks can i have apart from water and milk

Yesterday when i ate coke and wings and chips i felt funny and lightheaded obviously
I really should take my condition more serious
I am now thinking of going AWOL on fast foods and high sugar foods

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Unfortunately, that meal would reverse all the hard work I've done through the past five years!
Even though you can get away with a small amount of carbs, that really is too much except the wings.
You have to educate yourself with food and what is hidden in the fast food industry.

Fresh meat and fresh vegetables are the way forward to stop those dreadful bouts of illness or you will find yourself overweight, over hypoing, over the top with mental health issues. And overall really bad health, as the baddies (carbs and sugars) are not conducive to our condition.
A carb is a carb for us, your tolerance to them are the reasons why you feel ****.
Get control and get healthy!
Please read the forum.
Please ask questions,
Please don't find yourself in hypo hell, like I did!

Best wishes.

LoBright4 said:

I am going to start having greek yoghurt and berries for breakfast
It keeps me full for long periods of time
For snacks i will have nuts and a piece of fruit
And dinner and lunch will be meat/veg stir fries or sandwiches

My appointment with the dietition is all the way at the end of march so i will be experimenting how to prevent hypos with low gi foods

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It's really good to see the response you have just posted, if you intend to go low GI, you might find that you are still seeing some spikes with them. If you need to eat bread, have really low GI bread, such as lidl protein rolls or Bergen bread, there are others.
The need for testing is essential and do record the readings and what you have ate, portion size and timing in your food diary, your dietician will be interested, as will be your doctor.
I do love Greek full fat yoghurt even though my tolerance for dairy is rubbish.
It just shows how how food is made up, that can have an effect on us!

Let us know how you get on and there is bound to be more questions, please ask.
Keep us updated.
So we can learn from your experience!

Best wishes.

I've just read it again to make sure that it is RH they are referring to.
It's not!
They are referring to normal people who get a reaction from high carbs and sugars (like two glazed doughnuts!)

The reaction that this post prandial syndrome, is not for normal people either!(I remembered the name of the condition!)

The difference between a normal person having a RH reaction is normal but we are not!
Our reaction, which is not described, is more severe and the insulin response is entirely different to what they describe. We have an overshoot of secondary insulin response. That just keeps coming hence the hypo.
They do not describe the rebound effect of having low to moderate or high hypo treatment which is very critical at the stage of continuous hypos.

Having said that, testing and experimentation is the recommended way of treatment to start off with. You never know what your intolerance are and how much of low GI you can get away with, we are all different!