Reactive hypoglycemia, thoughts please?

Welcome to the forum @Katerinax
Take a look here
https://www.diabetes.co.uk/forum/threads/information-for-newbies-and-basic-stuff.87932/

Katerinax said:

Hi guys, I'm a 27 year old caucasian female, I weigh 55kg, I haven't been diagnosed with anything as of yet. I've been struggling now for about 9 months with some troubling symptoms. It started very randomly but I'd notice on occasion I would suddenly get a banging headache, sweats, blurry vision, fast heart rate, breathlessness, dizziness, wild moos swings etc. I didn't know what was happening but just ignored it for a while, it started becoming more frequent and severe, so I decided to go to the doctor. Not sure if related but I also developed migratory joint pain and occasionally shooting pains down my legs.

Anyway the doctor ran many tests for arthritis and anemia, ibd as I have some stomach issues etc. All negative however she did notice I had slightly elevated blood sugar of 8.1 and asked me to come in for an A1C.

After she said my sugars were slightly high I bought a blood checker to keep an eye on things. It's come clear that the symtoms I am experiencing are due to a drasting drop in blood sugar down into a low.

It took me a while to connect that it was in fact reactive hypoglycemia. My A1c was fine and my fasting blood sugars are usually around 5-5.5 however sometimes they ate 5.8 and on a few occasions I have recorded 6-6.4. But generally my blood sugars are normal. I've just noticed a trend when I eat or drink anything carby. The first time I checked it spiked to 11 in about half an hour then dropped to 3 within 15-20 mins. This caused some severe symtoms but I don't know how low it actually got as it was already going up slightly when I checked.

It appears to me that my first phase insulin response is lagging and not lowering sugars much then sugars raise again then drop suddenly at second phase. For example:

After a meal or sugar

sugars went from 5 to 10.7 within 30 mins, it then dropped to 10.5 and stayed at that for 10 mins, then spiked to 11, and then drastically dropped down to 3.

This is happening more and more frequently now and hI the trend is always the same, drastic spike for 30 mins, small drop for 10, spike again and then drastic drop.

I'm also constantly so tired and I just don't feel right at all. I do the bathroom alot but moreso if I drink sugary drinks.

My doctor was initially worried about type 1 diabetes but when my a1c was fine he just dismissed me and my symptoms like they are OK, I do not agree. He said he wasn't worried about type 2 as I don't fit the criteria.

I'm just concerned as it seems like my first phase insulin response is lagging or decreasing causing the second to overshoot. I'm finding it very hard to control and even a tiny bit of sugar causes drastic swings, so I have been trying to stick to a low GI diet. But now this happens almost daily

My doctor didn't seen concerned and I asked him if he could run an autoantibody test in case it is a slow type 1, he said he didn't know what test to run and told me to sugar if it happens and dismissed me.

Both of my parents have autoimmune disorders. I was wondering if anyone else has experienced anything similar prior to diagnosis? Possibly early LADA? Does this have any possible relation to diabetes?

Sorry would just like some guidance as I'm feeling dismissed by doctors, they never even bothered ordering a ogtt to diagnose the RH, even though some of the episodes nearly sent me to hospital

Thanks!

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Hi @Katerinax and welcome to the forum.
I have Reactive Hypoglycaemia.
What you are describing are my symptoms if I trigger a hyper then hypo.
What you have perceived is not so far off the mark.
I won't bore you with science, but what is happening to you if you do have it.....
You eat a normal meal, something like a sandwich, without testing your blood sugar rises quite fast, because as you have said your insulin response is lagging. For unknown reasons the insulin response does not link with the glucose but maybe it is not there at all. That is insulin resistance.
But we don't have insulin resistance.
What we have is little or none insulin response. Why? something to do with cells connecting.
Because of the higher than normal levels of glucose readings. Your brain tells your pancreas to get its finger out and provide more insulin.
So insulin floods your blood and disposes of all your glucose..
So that drives your blood glucose levels down into hypoglycaemia.

If that was your breakfast, once you have ate your cereal. The trigger and the hypos keep happening like a rollercoaster ride. Because every time you eat normal, you will get a 'reaction'.

What is it that causes the reaction?
You get your energy levels from your food/drink and your body's health is reliant on having a balanced hormone response when eating.
But, we don't have this. So, if we can't get good energy levels, what is the reason?
You were more than likely told to eat a low GI foods. But that is still eating the things that is causing it. It is the carbs.
I have said many times, that RH is carbs intolerant. Completely!
We have to get our energy levels from somewhere, the body couldn't function without energy. It is called Keto.
Being in ketosis, is how you get your energy levels without any carbs.
It is a huge lifestyle change, and a will power to match.
I have found that a balanced diet of protein, good fats (and I don't mean low or no fat) full fat Greek yoghurt with berries is wonderful. Vegetables especially the above ground variety, dairy and plots of eggs, some fruit if you can tolerate it.


We have a sub forum on all this and much more with other people's Hypoglycaemia and the rarer types, mind you all together there isn't many of us..

Ask away, read the RH forum and we will see where we can advise you.

Keep safe

Have you been checked for orthostatic intolerance or POTS? Some of your symptoms sounds POTS like, and people with POTS can have trouble regulating their blood sugar and can also feel worse after eating due to blood being diverted to the digestive system.


I'm not a doctor, but if your symptoms start or get worse when you move from reclining to sitting or standing, that could indicate orthostatic intolerance (your body is unable to adjust for the changing demands on blood flow when you are upright).

Just to complicate things, RH can *give* you orthostatic intolerance symptoms i.e. make you feel dizzy, tired, lightheaded.

Interestingly, the dietary changes to help with POTS have some overlap with RH: smaller, more frquent meals; lower carbohydrates.

Sounds familiar.

I started like that, blood sugar would spike up to 12 mmol, and later crash around 2-3 mmol.

Lowest being 2.3 mmol, without any medication. I first got diagnosed with RH. Unfortunally my blood sugar continued to rise with even higher tops over the next months. And I started with insulin after my blood sugar went over 20 mmol.

Best advice would be to keep track of your blood sugar, and ask for a diabetic GP or endo for a medical check if blood sugar gets higher or more out of control

Agree with Emile.

Your symptoms very familiar to me. In the late 70s I started getting such symptoms - no easy testing then. The GP suggested a low carb high fat / protein diet. I stuck to it sort of (!) Then in the mid 80s I had access to a glucose meter at work and finally could see the BG effects. One slice of marmalade and toast for breakfast - 11:00 am shakes and sweats and BG 2.5mM. I carried glucose tablets from then on - though in retrospect should have been more rigorous with the low carb diet.

Long story short, 1993 suddenly realised I hadn't needed the glucose tabs for some time. 1994 diagnosed with diabetes (tablets then insulin), then finally as LADA in the 2000's. Hope you can convince someone to do some proper tests.

Good luck!

agwagw said:

Agree with Emile.

Your symptoms very familiar to me. In the late 70s I started getting such symptoms - no easy testing then. The GP suggested a low carb high fat / protein diet. I stuck to it sort of (!) Then in the mid 80s I had access to a glucose meter at work and finally could see the BG effects. One slice of marmalade and toast for breakfast - 11:00 am shakes and sweats and BG 2.5mM. I carried glucose tablets from then on - though in retrospect should have been more rigorous with the low carb diet.

Long story short, 1993 suddenly realised I hadn't needed the glucose tabs for some time. 1994 diagnosed with diabetes (tablets then insulin), then finally as LADA in the 2000's. Hope you can convince someone to do some proper tests.

Good luck!

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If I may, I would think that you had a type of hypoglycaemia, not many doctors or specialist endocrinologist would have the diagnostic tools we now use for tests.

Because you were going hypo, the thinking back then would be that you are on your way to T1. So because of insulin resistance and high circulating insulin, your blood sugar levels would be in the diabetic levels. Despite the insulin, which was not used, your pancreas probably burned out and your insulin levels dropped. Hence the insulin you had to start taking. Over time this turned to Lada! That is the part that I don't get.

What were your fasting blood glucose levels at that time?
I am non diabetic, but if I had the same circumstances, I probably wouldn't have got the diagnostic tests.
My fasting levels are always between 4-6mmols.
I had to wait a long time for a second referral. I was told to eat healthy foods like porridge for breakfast, and like you I would get all the symptoms you have described.
I was creating too much insulin because of carbs, every time I had a blood test back then, my levels would be high or on the way down with symptoms.

Hope that you are not going hypo now. And yes you should have avoided the carbs, like me with RH, I am definitely carb intolerant.

Best wishes.

Lamont D said:

If I may, I would think that you had a type of hypoglycaemia, not many doctors or specialist endocrinologist would have the diagnostic tools we now use for tests.

Because you were going hypo, the thinking back then would be that you are on your way to T1. So because of insulin resistance and high circulating insulin, your blood sugar levels would be in the diabetic levels. Despite the insulin, which was not used, your pancreas probably burned out and your insulin levels dropped. Hence the insulin you had to start taking. Over time this turned to Lada! That is the part that I don't get.

What were your fasting blood glucose levels at that time?
I am non diabetic, but if I had the same circumstances, I probably wouldn't have got the diagnostic tests.
My fasting levels are always between 4-6mmols.
I had to wait a long time for a second referral. I was told to eat healthy foods like porridge for breakfast, and like you I would get all the symptoms you have described.
I was creating too much insulin because of carbs, every time I had a blood test back then, my levels would be high or on the way down with symptoms.

Hope that you are not going hypo now. And yes you should have avoided the carbs, like me with RH, I am definitely carb intolerant.

Best wishes.

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Hi, Thanks for your reply. My BGs at the time were normal except when going hypo. So, I don't think insulin resistance was an issue. Don't know about 'burning out' I remember a GP talking about that but this was before LADA was better understood (though it isn't fully understood even now). The progression towards needing insulin is just much longer than in T1. Whether RH is connected or not with the autoimmune progression seems still to be a mystery.

Best wishes

Having normal fasting levels before eating, having hypoglycaemic episodes around three hours and the symptoms as your blood glucose levels are going up and down, is absolutely classic RH.
To explain, when eating carbs, your background insulin and first phase insulin response is not at normal levels, the glucose derived from the food, will spike you very quickly. This is the trigger for a secondary insulin phase called an overshoot. This is what drives blood levels down into hypoglycaemia.

How the autoimmunity came about, I haven't got a clue!

Keep safe, best wishes.

Katerinax said:

Hi thanks for the response! How long did it take for your BG to rise to such levels? Did the reactive hypoglycemia stop as the rise became higher?
I have an appointment with an endo on the 6th so hopefully get some answers

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Not easy to give a simple answere, as I think this depends from person to person.

But for me, it took 3.5 year from I started having hypos, before it passed the 20 mmol mark.

I still have hypos, but that’s because of insulin injections. I don’t struggle with RH anymore, those issues slowly faded over the years as my blood sugar got higher.

I’m not completely insulin dependent yet, I still have some insulin production, but have to take insulin injections to all meals. So after 7 years, I’m still not completely insulin dependent.

So to answere your question. RH will fade, if blood sugar continue to rise. And it took me 3.5 years before I had to start with insulin injection (bolus). But I still have some insulin production after 7 years, and I still think it is a few years left (not sure how long) before I lose all insulin production and will need a pump.

Hope this kind of answere some of your questions. But just continue asking, if there is something

Katerinax said:

Hi thank you for your response! Do you know what causes reactive hypoglycemia without underlying issues? I'm just wondering why this would randomly start happening to me in the last 8 months or so! But even more recently it seems I'm spiking easier than before and staying high for longer before it drops suddenly

Luckily have an appointment with an endo on the 6th so hopefully get some answers

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Hi again @Katerinax .

The actual truth is no one is quite sure.
I know from my experience that heliocobacter pylori in my gut is my theory. But I was having symptoms before that. I think that I had a high carb diet, and taking into the circumstances I was working nights, up early, home late and even though I thought my diet was what I had recommended to me, over and over.
I had already an intolerance to dairy from young and a complete indifference to cooked vegetables. I am picky and careful that my food is healthy for me.
In my twenties, my GP confessed that my stomach issues were down to stress. A nervous stomach he put it down to.
It is no coincidence that I could never drink a lot of beer, Bacardi without coke was fine but most alcoholic drinks did me no favours, I have been known to crash after drinking beer. I have often thought maybe the writing was on the wall.
Because of my work the exercise I needed to offset spikes (sometimes) kept me fit for football and work. I had no trouble playing ninety minutes.
In my early thirties I had a quince, which is an infection in the tonsils. It took six months to clear up using a lot of penicillin.
I can visualise that evening when I was out with the wife in a pub and I started sweating. My head started aching, my throat began to close, difficulty breathing and finally collapsing in a pile on the carpet. I woke up in hospital.

I had this type of conversation with my specialist endocrinologist who found that I was having hypos after porridge first thing. The first three appointments were all in the morning and mine were always around 11a.m., so, I would be going hypo every time I saw him, three to four hours after porridge.
That was in 2012.

With that brief medical history, I really don't know, but have the theory that for a very long time, my body was adapting to this gut bacteria and slowly but surely, it started affecting me, and it came to a point around the turn of the century.
This was when I had an episode of feeling dizzy, really tired, brain fog, headache and unaware of what was happening. I was grey and fell asleep quickly in the surgery at work. They booked me an appointment with my doctor that same evening.
By then I had recovered but I couldn't face food.
I was sent for bloods which were slightly elevated, and my liver function was quite high, in the next few years, I was back and forth to my doctors, my first endocrine endo, who didn't have a clue. He said that it was fatty liver and advised me to stop the alcohol and eat healthy carbs.
And because my GP agreed with him, I was given a recommendation of good healthy meals. Plenty of fruit and vegetables and of course healthy carbs like porridge for breakfast! I like porridge but having crashes quite often was somehow not important, so the more carbs I ate, the more weight I put on. The worse my blood tests were, the worse my organs were getting worse and the symptoms especially brain fog was prominent.
Eventually in 2009, I was misdiagnosed with T2. Because of high blood glucose levels, 29mmols and my Hba1c then was around 9mmols.
For four more years, I struggled with my health and my weight was in stones, high teens, if I was fit and healthy my weight should be around 11-12 stone. So I was obese, unhealthy, and unaware what was going on. I trusted my GPs and if an endo told you it was fatty liver, that was causing everything. You and I would have taken his advice, but I was certain that everything I had tried for about fifteen years never worked.
Not one medical care provider told me to stop eating carbs. Even after diagnosis my endocrinologist who recognised the symptoms. Kept saying eat complex healthy carbs, regardless of how my food diary was showing I would spike.

I am baffled, I should have left it as ......... I don't know!
Because I have researched and read a great deal of anything to do with RH.

The old name was idiopathic postprandial reactive hypoglycaemia. They didn't work out the science of why we overshoot insulin, they just couldn't work it out.
Idiopathic means unknown cause.

They have now worked it out how, but why? No one knows.

There is fructose intolerance, there those that have the syndrome, there are those that something else is causing Hypoglycaemia and those that don't go hypo but have the reaction of going hypo, and effects their bodies. Pregnancy can cause symptoms of RH. Then there is the newest group of patients which has some health chiefs wondering about why. This is about those who get RH after stomach or gastric band surgery. And those like @Brunneria who have lived with RH all their lives and have T2 as well. There is childhood Hypoglycaemia, but a majority of those, grow up without it. A lot of doctors I have talked to reckon it is your thyroid, that has caused the low insulin followed by the overshoot, hyperinsulinaemia and crashes, but I really don't think it's the condition of RH, only the symptoms. Which does make sense if you research the symptoms.of thyroid. My daughter had a few years back one thyroid hyper and one hypo. It caused a lot of digestive problems.
There is still a force behind the dietary requirements for RH to include carbs, especially if you tell them you are completely carb intolerant.
They have asked why, so I tell them that if I eat carbs, I have brain function issues, and health issues, When I don't, my mind is clear and my health issues are not a problem.

The reason for noticing how sensitive you have become, it is called insulin sensitivity.
Ha! This is because you are adapting to your diet and having less spikes, so the further you continue, the more you will get symptoms of the spike and of course the hypo. But you use the symptoms as a warning and eat again, low carb and nudge your levels back into normal.

Test over!!!

Good luck with your endocrinologist, it may be a waste of time. RH is a rare condition, which in my opinion, most doctors wouldn't know that there is RH, never mind the symptoms. If he's like this only ask general questions, only be specific, on questions about insulin response and the overshoot. Ask if you have had an insulin levels test.

That is it.

My best wishes

Katerinax said:

*Update*

So I saw an endocrinologist, well, he asked me about my symptoms and I showed him data from my libre to show the spikes and drops. He straight up said he had no idea what is wrong.

I mentioned I've spoken to a few people who went through the same thing that had LADA, he said he would be happy to run a GAD-autoantibody test, I don't think he ran any of the other ones. He also ran an ANA test as I have migratory joint pain sometimes too.

I did mention I've heard RH can be a condition just on its own, he said it can, but usually people are overweight if there is no other cause. Everyone seems baffled only because I'm not overweight.

He said he would like to get me in for an OGTT, MMTT and a 72 hour fast.

I have my average glucose from my libre data. I don't know why but I've noticed my average is slowly rising, it was originally sitting around 4.9 the first week but its just slowly went up.

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Absolutely brilliant, just getting an endo that hasn't had a RH case to get the tests necessary for a diagnosis is quite open minded of him.

The reason why you go hypo is too much insulin.

The weight disparity between all of us is synonymous with endocrine conditions.
There will be a reason for it, but it could be for so many reasons, but time and dietary lifestyle changes has an impact on your weight.
You must have heard that the phrase about how some people can eat and eat and eat, and doesn't put any weight on and yet someone just has to look at food and the pounds pile on.

All the tests are fasting, and the OGTT should be at least 3-4 hours long, and definitely not only two hours. Always remember that if you do go hypo during the tests, not to have high carbs to treat the hypo. You want to nudge it up, not spiking again.

Do let us know how you get on.

Enjoy the fasting test!

Katerinax said:

Yes I think he said he wanted to order an extended OGTT, which will be 5 hours long. Just to see if I go into a low and how my body reacts after, if it shoots me back up or what the pattern will be after, while measuring insulin levels to gain a bigger picture.

He did also mention at the end there is a possibility of insulin resistance related to type 2 diabetes as it runs in my family. But nobody is looking there for now as I don't fit the profile. He did say if it is that not to just wait about and let it turn to type 2. I don't really know what he meant by that as I am a healthy weight, I exercise and have a pretty low GI diet, so if type 2 is in my future there isn't really alot I can do at this point to stop it

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I can clear that up for you.
If you continue to eat carbs in substantial amounts, and your insulin response gets worse and the insulin resistance gets worse and ignore the condition you will get gradually worse health, you will stop returning to normal glucose levels, you will have too much insulin or the effect of getting too little, your energy levels will drop.
With the imbalance and your insulin response is not enough, the glucose derived from the carbs will push your fasting levels up and your Hba1c levels will be a lot higher.
The roller coaster ride of blood glucose going up and down, will cause symptoms.
And within a few months of eating too much high GI carbs, you will start getting results that will be typical Of T2. It can be a progression, however, that having the right dietary intake to get your health as good as possible, cannot be overstated.
What ever condition you have, going low carb is a great idea anyway.
Even though you have reduced your carbs, are you still going hypo?

You are going to spend time in a hospital or clinic, all the tests are supervised. Don't let the nurses bully you into having a hypo treatment that you know will cause another hypo later on.

Record all your results, so that we can compare results.

Katerinax said:

Hi guys

I have done my OGTT, I haven't recieved my results yet, I have an appointment in a couple of weeks. About 2.5 hr in I started feeling slightly bad, I told the nurse I didn't feel I was actually too low, she checked on her reader and I was at 4.4, I checked mine at the same time and it was also 4.4, so nice to know mine is somewhat accurate, however I don't know what the lab results are yet. At about the 3h mark I started feeling worse, walls were breathing, headache, fast heart rate, sweating etc. I checked on my reader at that point and it said 2.8. I called the nurse in, she took about a few mins to come in, by then hers showed 3.3 and sent for lab tests. After that it stayed between around 3-3.7 for another hour or so (on my reader) I felt horrible the whole time.

She mentioned pancreas scans and 72 hour fast etc but we will have to wait to see what the doctor thinks of the results, I doubt it is a tumor as my fasting aren't low.

I do have a question @Lamont D if you don't mind. So since my OGTT I have been stricter with my diet, I only drink water or sugar free drinks and less carbs. Ive lost 2kg from when I was weighed in the hospital so now i weigh 56kg. I thought in the past week my sugars looked higher on my libre data so I started checking my fastings via finger prick.
5.7
6.7
5.8
5.6
These are the last 4 mornings, with 8 or more hours fasting. Are these numbers typical of reactive hypoglycemia? They are consistently higher than previous fasting numbers. But I've been trying to do better with my diet regarding sugar and carbs so I don't understand why they would be going up when I am eating healthy and a healthy weight.

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Hi @Katerinax
Thanks for sharing your results so far, it will be a week or so before you get the results of the bloods you gave. The weight loss is great, the diet is working. And those fasting results are fine, if you took the average of two weeks readings, you would find that your fasting levels are in normal range.which is definitely typical RH.
Be careful with diet drinks, as most of them contain aspartame, which is a sweetener that can be bad for some people. Sugar free doesn't mean carb free, unfortunately. Something has to give it the sweetness. And yes, it is a minefield out there.

The only other thing is the next test is the fasting test, the scan is necessary if the doctors aren't sure and are worried about your liver function results, but that's part and parcel of getting a true diagnosis. Don't worry about the fasting test, if you get your own room, you can treat it as a holiday in hospital........
The worst part is getting woke up in the night because of getting a blood reading.
Make sure you have plenty to occupy yourself with.
I agree with your assessment, I do think it is RH and not a tumour/s.
But time will tell.

I definitely wouldn't be worried about the slight rise in fasting levels.
If you have taken those readings before or probably after your eOGTT. This could be something that happens if you have had a hypo, it may, like a hangover, still make you feel awful a day or so after. And the less hypos you have, when you do, it feels worse.
Also, your hypo awareness will be better.
Keep asking. Keep safe and hope your next lot of tests get a diagnosis.

What did the nurse give you for the hypo?