RH and Carbohydrates

DEM1988 said:

Hi,

I'm following a Dietitian's advice after being diagnosed with Reactive Hypoglycaemia but struggling with carbohydrates.

I was recommended to eat a carb heavy diet such as potato, rice, oats and wholemeal wheat.

My blood sugars are going crazy with this diet plus I suffer from IBS so the oats and wholemeal bread have made that much worse.

Potatoes, white bread and rice all cause really big spikes (after about an hour of eating) then I get the sudden drop which leads to a hypo.

Can anyone advise me on where I'm going wrong? Is there any good carbs I should be eating?

Thanks,
Dave

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Okay, that's surprising advice... The hint is in the name: *reactive* being the key here. Your pancreas overreacts when you eat carbs, giving off more insulin than you need, and the hypo's come on as a reaction, that's the whole point. So you cut the carbs, then the overreaction doesn't happen. Otherwise you're bouncing all over the place, more carbs just make it that much worse...

That's a really, really gross oversimplification by the way, @Lamont D can give you better specifics, but.... A low carb diet would likely keep your blood sugars from fluctuating out of control.

Good luck!
Jo

DEM1988 said:

Hi,

I'm following a Dietitian's advice after being diagnosed with Reactive Hypoglycaemia but struggling with carbohydrates.

I was recommended to eat a carb heavy diet such as potato, rice, oats and wholemeal wheat.

My blood sugars are going crazy with this diet plus I suffer from IBS so the oats and wholemeal bread have made that much worse.

Potatoes, white bread and rice all cause really big spikes (after about an hour of eating) then I get the sudden drop which leads to a hypo.

Can anyone advise me on where I'm going wrong? Is there any good carbs I should be eating?

Thanks,
Dave

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Hi @DEM1988 and welcome to our forum.

As @JoKalsbeek has described it very well, carbs are your problem.

Back when I was first diagnosed and even before, I was told to eat 'healthy' carbs.
So it was porrige first thing, baked potato with something like beans with it, and of course meat and two veg for dinner. Fruit, and a possible treat now and then.
My endocrinologist got me the tests to diagnosis.
Then a new dietician, under orders from the endo, suggested I try to reduce my carbs and sugars and fruit, use the food diary that I was given. And to go on line, and come here to this forum.
It didn't have an RH sub forum then.
But I started asking questions, about trying to firstly, feel better, reduce symptoms, and look for answers.
Just as you have.
It wasn't easy to discover that the advice from every doctor, medical practitioner, everywhere I looked had eat carbs. I was very ill, and obese!
My final test, whilst starting looking for those answers after an extended oral glucose tolerance test (5 hours) was a mixed meal, lots of blood tests and finally a fasting test.
Which convinced my endocrinologist that it was RH. It was during the 80 hours in hospital that I found out a few things.
I could fast and I would feel better.
I was glucose intolerant, I had been lactose intolerant since young.
I was losing weight.
I didn't need carbs or sugars, or anything else that spike my bloods high.
And discussing with my endocrinologist, that I should try and reduce my carbs quite a lot.
I describe it as carb intolerant.

What tests have you had?
What is your latest hba1c?
Do you understand, why your blood glucose levels are on a rollercoaster ride from high spikes and hypo lows?
Have you had a look at some of the threads on our forum?
Because you will get more of an idea, what is happening to you.

And I would stop any food that effects your IBS.

In summary, RH is a condition that is triggered by food. But only certain foods, usually carbs and sugars, fruit to some extent.
Keep asking.
We will try and help you.

I live without carbs. I have a diet tailored by me, for me. One that I enjoy.
And with RH and your other issues, how can anyone else know what food you can tolerate?

My best wishes.

DEM1988 said:

Thanks very much for your replies. I don't know why I was asked to eat starcy carbohydrates with every meal as like you've both said it causes the inevitable glucose spikes, sugar crash then the hypo.

I think carbohydrates are an issue for me. Dairy also causes the same reaction as carbohydrates so I'm now using lacto-free versions of dairy products which have sorted the dairy hypos out.

What tests have you had?
I've had blood tests to rule out Addison's Disease and other autoimmune conditions. I've had tests to look for Insulinoma. Probably other blood tests too but they all came back clear so the working diagnosis is Reactive Hypoglycaemia.

What is your latest hba1c?

40 mmol/L

Do you understand, why your blood glucose levels are on a rollercoaster ride from high spikes and hypo lows?

I'm starting to realise what's happening thanks to the Freestyle Libre systems. I'm keeping a food diary to document what's causing what.

Have you had a look at some of the threads on our forum?

I've used this forum before previously when the Endocrinologist thought that I had Insulinoma. I'll have to chip away at the Reactive Hypoglycaemia forum to gain more knowledge.


Thanks again,
Dave

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Hi Dave
Interesting replies.
I'm glad you included the tests for insulinoma, cos that covers similar tests for RH.
If you are not aware, there is no diagnostic test specifically for RH, but tests that did king others.
But I'm still surprised that an extended oral glucose tolerance test hasn't been done.

Because of your other conditions have probably been masking the hypoglycaemia and the higher than normal spikes.

I just don't bother with alternative dairy stuff, I'm too wary of what is in them. On some of them, the list of ingredients is bigger than the pack! Ha!

The reason why we are recommended carbs, is behind a misunderstanding of the actual science of the condition. Also that we depend on carbs for brain function.
Both as is the need for healthy eating is that most GP's don't have the training in hypoglycaemic conditions.
They are trained to think that because healthy carbs can be good for non diabetics as I am, and other Non diabetic conditions, it is a wrong assumption. We cannot tolerate a low percentage of carbs.
And that we need carbs for brain function. We don't! The body adapts.
How do I know?
I feel better fasting. My four days in hospital, fasting, taught me a lot. And my health improved.
And I have done, keto or very low carb, now for over a decade. It does work for me.

Having done the research, I just believe that there has not been enough research, if any at all, mainly due to the rarity of diagnosis and the ignorance of most of the healthcare industry.

Simply put, you eat carbs, your first phase insulin(hormonal) response, is not enough for the glucose derived from the carbs you spike high, your brain reacts, telling your pancreas to produce more insulin, but it is too much, an overshoot it is called, it drives down your blood glucose, any attempt of the liver producing a liver dump is overwhelming, but gradually, does arrest the downward spiral but always too late to prevent the hypo.
So the logic dictates, no carbs, no spike, no trigger, no overshoot, no hypo.

To finish, there is no magic pill, to cure RH. But it is controllable.
And I would never recommend any because of your other conditions.

Keep asking, keep safe.
Best wishes.

Just somewhat barging in @Lamont D - but I finally understand what you've always meant by first and second stage response - it's all about the sympathetic nervous system... for most people there is no second stage - only homeostasis in the pancreas, but RH is about always having your hypothalamus override your pancreas, and having it produce more insulin than you need? am I close?

Barge in, barge in by all means, barge in!

It was noticeable in all my tests, mostly my numerous extended oral glucose tolerance test, and in my experimental stage of discovery of what was happening when I ate.
There was a double spike, unless I didn't have carbs or sugars.
This was because my first phase insulin response was weak and wasn't sufficient for a glucose load from the glucose 75g.
This is the trigger for the next phase through the process that is called the overshoot of insulin.
As far as I had got, this is something to do with the signalling between the brain, recognising, still higher than normal BG levels, from normal, and the gut, the pancreas, that more insulin is necessary, to bring the glucose levels down. There is something called the gut, brain axis and if you include the enteric system within the digestive system. The overshoot floods the glucose and ends in hypoglycaemic episodes.

I would add that indeed you are close.
But from my experience and knowledge.
I know that many T2s have similar outcomes.
There are a range of meds, that help increase the insulin weakness in first phase. The gliptin range of drugs are one type. And if this imbalance of Insulin or other hormones along with insulin resistence, high levels of circulating insulin that is not used. It is only going to be a much worse outcome.
And one thing I discovered and my endocrinologist was interested in my points, was that in diagnosis of many metabolic, diabetic conditions, insulin testing is never done. You could be prediabetic, Borderline, T2, high levels of hyperglycaemia. And the route cause is too much insulin in the blood, and instead of treating the cause and getting the test done. The doctors resort to insulin.

T2 covers a lot of different issues within its diagnosis and the diversity of each unique individual is another aspect that doctors don't take account of. And so is treatment
And when you include other conditions that effect management and treatment.

This is why this forum is here.

Most GP's don't have the benefit of specialist training, or the time, or the infrastructure to diagnose or offer treatment that will really help with control. Never mind see a specialist that has experience of the weirder conditions of the likes of my condition. I was extremely lucky to find one.

Long post, sorry.
You wanted to barge into trying to understand this weirdo.
Good question.

DEM1988 said:

Thanks for everyone's help. I have just had the best week of my life - only one hypo (3.6mmol) which was good for me as I'm usually in the 2.5mmol - 3.3mmol range with hypos. Things maybe looking up.

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Keep it up.
I'm so glad something is now working for you.
Best wishes.