Reactive Hypoglycaemia

RobJay said:

Hi D Lamont
I have recently been diagnosed with reactive hypoglycaemia, and have been reading some
of your posts. I have bought a CGM to try and help me navigate through my change to a low carb diet,
I have been unable to keep my blood glucose level up to a decent level, the recommended 4mmol,
it gets worse through the day, in the afternoon my meals don't seem to have little effect on raising my blood glucose.
At night my blood glucose drops to about 3mmol and doesn't change until I eat something in the morning.
Is this usual for reactive hypoglycaemia in your experience?

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Hi as per forum rules , I cannot say specifically what it is or diagnose.
That said, it does seem as though hypoglycaemia is happening.
Wether it is RH, I cannot say.
The reason is that with RH in my experience, the trigger is carbs or sugars, which the abnormal high spike causes the reaction of excess insulin, which causes the hypo.
Your brief details, don't give me enough to say if it is similar.
Can you tell me which diagnostic tests have had other than the normal bloods?
What is your fasting BG levels?
Do you record high spikes?
My endocrinologist would say that the real level of hypoglycaemia for hypoglycaemic conditions is below 3.5mmols, but do record BG levels of under two.
But not as you say, either in normal (4-6mmols) or just below.
Have you tried fasting?
Because with RH, you should not go hypo when fasting.
Have you been referred to an endocrinologist?
Lastly, going keto is the best way of control for RH and other metabolic conditions.
But it will take a couple of weeks or so to do, cos you need to lower your carbs slowly, you just can't go food turkey, lowering about 50g in total every few days, until you feel the symptoms have gone or a bit better.
Keto is mainly carb free, but as in everything, individual decisions may lead to having a few carbs rather than none at all. A tailored dietary regime to your tastes, availability, affordability etc.
Protein and good saturated fats are so important in a keto diet.
And I would always advise to eat fresh food. Cos of the hidden additives, sugars that are prevalent in much of production foods. The same goes for oils. I only use natural saturated fats.

Hope this helps
Best wishes. And welcome to the forum.

RobJay said:

Hi,
Thanks for your reply, I was referred to a endocrinologist, had a mixed meal test on which showed a drop in blood glucose to 2.5mmol, I haven't done any fasting, I also don't seem to be recording any high spikes. I did have a carb heavy diet before which I have reduced, but now I'm really struggling. My blood glucose seems to be consistently dropping and then settling to 3mmol overnight, this is not what I expected from my conversation with the endocrinologist, as you say I was expecting excess carbs causing a hypo.

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There is with CGM s, tend to have a compression low during the night. It is common.
The readings you get through the day including before and after food is in normal range? Yes?
But with the mixed meal test showing below 2.5 is defo hypoglycaemia.
I have heard of something familiar if that is right.
But, do you get the hypos after food? Not before? How long after?
Sorry for the questions.

RobJay said:

Hi, the readings through the day seem to be normal on my CGM.
My blood glucose is dropping after food, probably starts to dip after an hour, although it goes down to 3, it doesn't drop quickly like in a hypo
and I don't get the usual symptoms of a hypo, just feel tired. So I am in a constant battle to try and get my blood glucose up.

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As you say, the hypo happens after food, which is similar but not the spikes., Which isn't for RH.
But it is hypoglycaemia.
My drop after food is usually after my spike, which happens about an hour after 45-60 minutes.
My drop goes into hypo another hour and a half to two hours depending on what I ate etc. There can be no definite time due to glucose derived from meal and insulin produced, also what you do between testing such as exercise or work, if you have a cold etc.
But the testing is important.
So my drop into hypo, is not as fast, but it is significant.
I do believe that you need more tests to find out if it is hypoglycaemia or a pancreatic condition such as insulinoma.
But it is worth noting that, not spiking high above normal levels is not normal.
But I have heard of it before.
It is termed as hypoglycaemia, non diabetic as is RH, but so similar to RH.

There is a loosely termed condition, that call it flatline hypoglycaemia.
But I'm truly guessing. You need the tests. Cos it could be a few things.

By going low carb, keto, you can control the usual culprits that trigger the hypoglycaemia.
Especially if food is the issue.
Now, from my experience, doctors don't like patients that avoid carbs.
I was told when very young to avoid dairy cos of my lactose intolerance.
But when I found I was carb intolerant, they advised me to eat them.
So I advised them, I wouldn't because that was the reason I was very ill .
Intolerance to food is very common but the reactive effects can be so rare.
This is the reason why so many doctors don't understand the science behind hypoglycaemia.
The research just isn't there.
Every diagnostic test for hypoglycaemia, is a test to discount other conditions, there is no true test for hypoglycaemia, or a cure, no magic pill, meds if offered don't usually work or have just as bad side effects.
Avoiding the foods that trigger the reaction is the best treatment. Control of your BG levels.

Keep asking, if you think of anything, that might help. Let us know.
Best wishes.

AJ71 said:

I'm a type 2 diabetic in remission (hba1c of 33 for over 2.5 years) who developed reactive hypoglycemia 9 months post gastric bypass surgery. Super difficult to manage but this is what I've learned thus far:

My body does not like carbs, especially sugar, alcohol, white flour based products, potatoes, pasta, rice, legumes, some fruits and most of the complex carbs. My bsl will rapidly spike (food going from bypass tummy directly to lower intestine rather quickly) then my pancreas goes stupid in response to the spikes, throws out way more insulin than is required, then 90 minutes post meal, I'm just about passing out with low blood sugar.

If i eliminate carbs completely, I stop the food related hyper-hypo cycle, but then I become hypoglycemic all night long when fasting or in response to exercise because there is no glucagon stored in the liver, to get bsl back up to normal when it starts to drop. This actually felt worse than the carb-related hyper-hypo events

So it's kind of a damned if I do and damned if I don't situation. I now eat 6 meals. 3 of them I have a small amount of carbs alongside 100mg of acarbose to try and stop the spike - the theory being if we prevent the spikes, we prevent the crash, but I've found this to be a bit hit and miss, and what works one day, doesn't always work the next.

The next they've done is added in a low dose (0.6) of GLP1 - liraglutide each day. The mechanism of action I'm not entirely sure about, but I'm assuming as glp1 is the hormone that controls insulin and glucagon response somehow it must help the body to regulate these better, and for the past 6 weeks the number of hypos has been significantly less. It was normal some days for me to have 2-3 events or when carb-cutting to spend 6-8 hours of the night/day in a hypoglycemic state. I now might get 2 or 3 symptomatic lows per week, and I've been able to stop the continuous glucose monitoring.

Anyway just wanted to share my experience. I'm in NZ and the so-called specialists - bariatrics and endocrinology have been pretty useless as far as trying to get this sorted for me. I don't think anybody really understands the mechanisms of post gastric surgery hypoglycemia and it's all a bit hit and miss. I do wonder if being type 2 pre surgery was a factor.

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I'm taking this from what I have read in my exploration of RH and similar conditions.
The RH from your operation is quite common after surgery, more than RH from other reasons and of course .it's research because of it, is being done.
What is happening is called glucose dumping, and the reason behind the acerbose to try and slow down carb absorption. But as I have found out it is very indifferent if it works at all. In my opinion, better drugs may help, but with my rh, it is only a complete change in diet.
Carbs have me as well. I have classed myself as carb intolerant.
And until I started keto or staying in normal levels continuously did I notice the hypos stopping.
But unlike yourself, fasting is really good for me. I have never gone hypo fasting.
I'm assuming that the hypos while fasting also happened before the surgery?
I know from my experience that, when you eat any carbs, that starts the rollercoaster ride of high and low BG levels. And doesn't stop until your BG levels settle down or maybe through sleep.
And it does seem that like me, you have since then have an overactive pancreas. The signals from brain to your organs, are not helping by any means.
The six small meals a day for me didn't work. I have heard of this, and to me, and my condition doesn't make sense.
Apparently, according to my endocrinologist. It is a common misconception that having meals every three hours stops the hypos and provides surplus glucose for good brain function. Because of carbs and glucose derived from carbs for energy, but I get better energy levels without carbs.
However, it doesn't stop the rollercoaster ride of BG levels, so you are still experiencing the symptoms.
And it doesn't stop the hypos if you miss a meal????
Also being intolerant, should mean to be avoiding them, just as I am lactose intolerant and told to stay away from dairy. It is not logic if you are intolerant to wheat, starch, grains etc??
I only eat fresh food, cooked at home. No manufacturing processed foods, and no vegetable oils, palm oils etc. Only good saturated fats.
Then I know what is going into my stomach.
With my RH, no carbs, no high spikes, no overshoot of insulin, no hypos, no symptoms.

I hope, I have given you some thought about your situation.

And I have met and seen many doctors and endocrinologist who have no idea whatsoever about the science around reactive hypoglycaemia.
And how much your future health depends on control of your BG levels.
Most of them just use the text books, which are totally wrong and damaging to your health.
Best wishes