Newly diagnosed, is it really RH?

[Missha]

Hello everybody and please help as I am getting really hopeless here

I was diagnosed with reactive hyperinsulinism in the beginning of December and since the disease is pretty unknown in my country I found all the info here so thank you for all your experiences and stories. I was struggling for so many years and the symptoms was getting worse and worse, the time between meals when I was feeling ok (ok at that time, in reality not really ok) was getting shorter and shorter. Finally, I found a diabetologist who has heard about RH and sent me to 3 hours OGTT. The results were:
blood sugar levels: 4,9 (fasting) 5,2 (60 minutes) 4,7 (120 minutes) 5,7 (180 minutes) not sure if the last one is correct, its pretty high for me even after meal!
insulin levels: 6,22 (fasting) 63,38 (60 minutes) 46,77 (120 minutes) 44,02 (180 minutes)
c-peptid: 0,49 (fasting) 2,28 (60 minutes) 2,07 (120 minutes) 2,13 (180 minutes)
HbA1c: 33 mmol
After those I was diagnosed with reactive hyperinsulinism which leads to RH because of the insulin levels. The true is, I wasn't even feeling hypo after the test, which is weird, as I am having first hypo feelings around 10 am, most of the times.
I changed my diet immediately, low carb or keto, I am trying to keep the carbs around 50,60 a day. I was feeling pretty bad for about 14 days, almost like non stop hypo but then it changed and I felt like my life changed completely. I wasn't feeling tired after every meal, maybe two days I didn't even have hypo before lunch which was for the first time lets say in five years. I was soo happy! But then, after another week or two it turned back to "normal". I wake up, have a tea and if I don't have a breakfast in an hour I go hypo around 10 am. At 11:30 the hypo starts slowly again, have to eat lunch not later than at 12. I feel like afternoons are still better than there were before low carb but that may be because I have really big well-rounded snack (big meal lets say) between lunch and dinner which I didn't eat before going low carb.
I also started measuring my blood sugar when going low carb and that's the weirdest thing! It makes me feel so hopeless and angry. When I'm feeling hypo (around midday or even in the morning if I don't eat my breakfast in an hour or max two hours after waking up), my blood sugar is usually above 5! Few days ago I wasn't able to eat my lunch at 12 and I was eating around 12:40, my body was already shaking like crazy. I was not feeling that bad since going low carb. Blood sugar? 4.6 I was like what??? That's not possible!
So here I am, asking for an advice. To be honest after those measuring I am not even sure if I was ever really hypo. After going low carb I had a piece of lasagna with soy meat and I was 3.5 after hour and 30 minutes. But I was feeling like the hypo was just about to start so I think that maybe it was just incorrect measuring. I didn't try any carb food after as it scared me a bit, I am crazy scared about hypos since I almost passed out once, worst feeling ever, don't recommend
I read about the hypo hell periods here, that's what I went through too, I can't believe how many years I have lived like that. I finally saw a light at the end of the tunnel but now I am feeling like it's moving away

And finally the questions! DO YOU THINK I REALLY HAVE RH? DO YOU EXPERIENCE HYPO SYMPTOMS EVEN THOUGH YOU ARE NOT REALLY HYPO?

Thank you for all your advices and experiences!

 

[Bluetit1802]

Hello and welcome.

I can't help you, but I know someone who can @Lamont D

 

[Brunneria]

Hi and welcome!

I have a couple of speculations. The first is that maybe, just maybe, you are experiencing one or more food intolerances, which can have the same symptoms as both hypers and hypos.

The second is that you may still be eating too many carbs. You mention still eating 50-60g carbs a day? That would be enough to trigger my RH if I did that more than a couple of days in a row. I would suggest a couple of days where you eat as close to zero carb as possible, to test that theory.

I hope that helps, but I could be completely wrong!

 

[Lamont D]

Hi @Missha and welcome to our forum.
I agree with @Brunneria you still may be eating too many carbs.
You clearly have some intolerance to what you are eating.

I have had the similar symptoms and gone through my version of hell.
You may have to go lower to achieve your control which means that if you can keep your blood levels in normal range, (3.5-6mmols) for as long as you can. This will help you adjust to being in the right levels to get your health back.
This will also help with your hyperinsulinaemia levels, simply because your not eating the carbs that cause the spikes.
What dietary advice have you had?

The answer you asked is, I have heard of similar conditions such as described, where the patient have all the symptoms and the spikes but don't go into hypoglycaemic episodes. For a T2, this is called a false hypo, but with the RH symptoms, it could be post prandial syndrome.

It is unusual for an extended OGTT to be only three hours, all five or six I had were four hours or more. I have Late Reactive Hypoglycaemia. This means I go hypo after more than three hours. That is if I trigger the insulin overshoot. If I don't spike, I don't trigger the hypo.

If you have any food intolerance, and you experience the hell you have described. It will help you if you go as low as possible just to see if you get that great feeling of being normal again.

Keep asking, keep safe.

 

[Missha]

Hello @Brunneria and @Lamont D and thank you very much for your time!
I don't have any allergies or intolerances as far as I know (had gastroscopy and colonoscopy about 8 years ago, which is long time ago, so that may changed, and some basic allergy tests about one year ago, everything perfect)
Also I don't feel bad right after meal, on the contrary I feel immense relief in about 10 or 15 minutes after meal. The hypo symptoms starts about 2 hours after breakfast and about 3 or 4 hours after lunch (not if I have a big snack). If I postpone breakfast to 10 am I feel already pretty bad around that time - but I always have a plain herbal tea first thing in the morning, not sure if that can activate the insulin as I expect there are no carbs. The only hypo feelings related to food which I am aware of is coffee and theine teas such as green and black tea. I stopped drinking those even before being diagnosed because I realized that they shorten the ok period between meals. I went from 2 hours without hypos to one if I had coffee.
I have been keeping my blood levels for about a month between 4.5 and 5.7, only once since going low carb I was 4.1 and few days ago I was 6.1 after a workout (no cardio, just my body weight). I always felt so bad after any kind of sport also had some really bad hypos or maybe hypers? after working out or running so I just stopped Now when I have glucometer I tried to do a simple body weight workout and was really surprised about having 6.1, I was not feeling ok during the workout.
I haven't had any special dietary advice, just to keep it low carb with complex carbs which I don't even try. Just trying to keep the carbs down as much as possible. My doctor met only one person with this condition and he had no idea what to do with me but at least he knew something about it, another doctor I met before told me I was completely ok and just to eat more since I am very skinny. I eat a lot.
3 hours looked like a maximum they were doing, they even told me that they never measured insulin for 3 hours
I read an interesting post by @Brunneria saying that Libre found out that you are going low before you feel like it and measure your blood levels which then seems ok and no hypo. Looks like I have to buy Libre! Maybe it will show me something interesting.
I will try to keep the carb levels down as much as possible and will definitely do the allergy tests again. Are there any other tests you would reccomend that could tell me more?

Thank you again, really appreciate your help, it's so nice to be heard!

 

[kokhongw]

Perhaps this write-up might give you something to think about...

Broadly there's 3 key variables here...
1) Glucose
2) Insulin
3) Ketones

For metabolically normal people, Glucose stays around 4.0-6.0 mmol. Insulin/Ketones levels are seldom measured.

Our brain is typically fueled by glucose and is an energy hog. If it senses that it is not getting enough energy, it triggers all kinds of responses...

One typical model regarding RH is this, carbs triggers excessive insulin, that drives down glucose, so our brain goes into a frenzy...

Hence the idea of going low carbs is to avoid the high insulin responses which we cannot measure, but assumed is happening in the background. Your 3 hour OGTT shows a spike in insulin, but no steep drop in glucose...

So the general hypothesis is that with high insulin and low glucose, the brain cannot function properly. Usually, ketones will be produced to fill the energy gap. But high insulin suppresses ketones production. So there's no ketones to the rescue...

We can see from 10 days fasting experiments of healthy individual that when glucose/insulin is low, ketones production goes up after 48 hrs or so. This time gap may differ depending on our level of metabolic dysfunction...we may be highly insulin resistant and needs a much longer time for both glucose AND insulin to be low enough for ketones production to ramp up...

https://thequantifiedbody.net/10-day-water-fast-results/

So in order to deal with RH... glucose/insulin levels needs to stabilize. Then our brain can have a stable flow of energy supply...

Libre is a good tool to pick up the peaks and crashes that we may some times missed with finger prick test.

 

[Missha]

Hello and thank you for all the info!

I have actually read a lot about those topics since I was diagnosed but no answear to why my insulin goes up but the glucose doesn't go down, so no real hypo is happening (even though the feelings are there). I think that the glucose levels must be stabilized by now (I eat about 50 carbs a day for about a month now). Due to the glucometer my brain has a stable flow of energy - before meal and 1 or 2 hours after meal stays around 5.4.

It's an unfortunate mystery!

Perhaps this write-up might give you something to think about...

Broadly there's 3 key variables here...
1) Glucose
2) Insulin
3) Ketones

For metabolically normal people, Glucose stays around 4.0-6.0 mmol. Insulin/Ketones levels are seldom measured.

Our brain is typically fueled by glucose and is an energy hog. If it senses that it is not getting enough energy, it triggers all kinds of responses...

One typical model regarding RH is this, carbs triggers excessive insulin, that drives down glucose, so our brain goes into a frenzy...



Hence the idea of going low carbs is to avoid the high insulin responses which we cannot measure, but assumed is happening in the background. Your 3 hour OGTT shows a spike in insulin, but no steep drop in glucose...

So the general hypothesis is that with high insulin and low glucose, the brain cannot function properly. Usually, ketones will be produced to fill the energy gap. But high insulin suppresses ketones production. So there's no ketones to the rescue...

We can see from 10 days fasting experiments of healthy individual that when glucose/insulin is low, ketones production goes up after 48 hrs or so. This time gap may differ depending on our level of metabolic dysfunction...we may be highly insulin resistant and needs a much longer time for both glucose AND insulin to be low enough for ketones production to ramp up...


So in order to deal with RH... glucose/insulin levels needs to stabilize. Then our brain can have a stable flow of energy supply...

Libre is a good tool to pick up the peaks and crashes that we may some times missed with finger prick test.

 

[kokhongw]

Two more points I note from your experience:-

another doctor I met before told me I was completely ok and just to eat more since I am very skinny. I eat a lot.

If this is the case, you have very little body fats, in that case even going low carbs/ketone may not significantly increase ketones for you. Even if it does, that may not be a good idea because if you are not burning fats... the only other thing left to burn is proteins/muscles...

You may want to consider increasing your fats intake... eg adding Virgin Coconut Oil, butter, cream etc to your meals... and see if that helps to stabilize/improve your hypo response.

I find Stephen Cunnanes study/experiments on brain metabolism insightful.

but I always have a plain herbal tea first thing in the morning, not sure if that can activate the insulin as I expect there are no carbs. The only hypo feelings related to food which I am aware of is coffee and theine teas such as green and black tea. I stopped drinking those even before being diagnosed because I realized that they shorten the ok period between meals. I went from 2 hours without hypos to one if I had coffee.

Yes, season tea drinkers will be aware of its hypo effects, called being tea drunk. I re-connected the dots after my T2D diagnosis and did a little writeup on my observation:-
https://myhba1c.wordpress.com/2016/05/23/raw-puer-tea-for-glucose-control/

Take care.