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Reactive Hypoglycaemia Insulin Levels

DaisyChloe

Member
Messages
22
Location
London
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi guys,

I posted a question about a year ago about reactive hypoglycaemia and I was waiting for a referral to an endocrinologist and for a glucose tolerance test.

I have had 2 OGTTs since then, the first confirmed I do have hypos and my BGLs went down to 2.4 but they didn't check my insulin levels for some reason. In the most recent one my BGLs went to 2.1 and my insulin levels were tested each time they took blood.

In the letter I received they said "Insulin levels are reflective of reactive hypoglycaemia" but I'm not 100% sure what that means? What are normal postprandial insulin ranges? I don't understand why my BGLs go low.. I've attached the table of my results in case that's useful for a reference. I'm guessing/hoping it will be explained to me at some point but everything is so disjointed at the moment.

Thanks in advance for any advice
 

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Hi and welcome back

My understanding is that a diagnosis of RH is a diagnosis of elimination. In other words, ‘insulin levels are reflective of RH’ means ‘we have looked for everything else we can think of, and this fits the pattern for RH so we will call it RH until another explanation presents itself.

Don’t feel hard done by. There are quite a few other conditions which are diagnosed using the same process.

as for an explanation as to why your bg goes so low... ask them. And please come back and tell us what they say.

Again, my understanding would be
Short answer: You overproduced insulin which drives bg low
Longer answer: You ate sufficient carbs that your body couldn’t cope, you overproduced insulin which drove your bg low
Longer answer: You ate sufficient carbs to drive your bg up too high, too fast, which triggered your body to overproduce insulin which drove your bg low
Longer answer: You ate too many carbs which drove your bg up too high, too fast, which triggered your body to overproduce insulin which drove your bg low and your body failed to switch the insulin off in time, and failed to compensate for the dropping bg in time.

Good luck with your next appointment.

what treatment are they proposing?
 
What @Brunneria said!

Or, you are carb intolerant, which causes the overshoot and drives your blood sugar levels down into hypoglycaemia!

I'm surprised you didn't go that high during your eOGTT. I always went into double figures in the teens mmols after about an hour after the glucose.
Also your hypo happened about two and a half hours, much earlier than I did. But your graph is typically RH!
As for your insulin, you can see the sharp spike and it stays high until you actually go hypo. It is a similar curved graph as I have had but mine continues until the fourth hour.
Are you keeping good control?
What dietary recommendations has your specialist recommended?

Brun is right, all tests are done to eliminate other conditions, mainly pancreatic conditions, they should be done to leave no doubt that it is RH!
Have they suggested a 72 hour fasting test?

Keep safe
 
Hi both,

Thanks for your replies.

I will definitely ask them what they think. They wanted to see what my insulin levels were doing before doing a 72 hour fast, so I'm not sure whether they will do one or not.

@Lamont D that's interesting that yours lasted longer and you had higher BGLs after the glucose. How much glucose were you given for your OGTT? I had 113ml of that horrible thick liquid! I've never had a problem with my sugars being too high, only going too low.

My control isn't very good at the moment... Obviously I had to have a load of sugar for this test and I will definitely have a hypo if I eat sugary things, but often it takes me by surprise and I'll have a hypo after eating a normal healthy meal. I have an appointment with a dietitian on 23rd and I imagine they're going to advise a low GI diet.

When I first saw the endocrinologist she thought it was related to autonomic dysfunction (I have a diagnosis of postural orthostatic tachycardia syndrome) but my neurologist disagrees, so I have no idea.

Anyway I appreciate you both replying and I will definitely let you know what they say
 
The solution to RH isn't, more often than not, low GI, it's usually low carb. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html <-- have a read, might be if interest. What you consider a healthy meal may include brown bread and the like, but whether it's white, brown or wholemeal, it's all carbs and your pancreas has no idea what the proper response to that is. Same with spuds, rice, cereal, corn, pasta, wraps, fruit (!!!) all that sort of stuff...

It's not just sugars, it's the starches too. Get rid of them, get rid of your pancreas' overreaction. It really is that simple.

Good luck!
Jo
 
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Hey,

Thanks for your reply.

I think if they recommend low-GI I would want to try that before low carb as it's less extreme. I really wouldn't want to cut out fruit and veg.

All carbs do eventually turn into glucose yes, but with starchy carbs they're released into your bloodstream slower so will cause less of a spike. Also, I'm not type 2 and do not have a problem with spikes in blood glucose levels, and I would worry about losing weight or what to eat (I don't eat meat and avoid eggs and dairy) following a low or no-carb diet.

I'm really glad you have found a solution and that your current diet is working for you
 

I totally respect your choice not to eat meat, eggs and dairy, but I think you have a major misunderstanding if you think that going low carb means you have to cut out fruit and veg. Huge numbers of people eating low carb have a generous intake of both fruit and veg - they just choose to eat lower carb fruit and veg that don't harm their blood glucose. Berries instead of bananas, celeriac and cauliflower instead of potatoes, avocado instead of mango.

Also, please don't fall into the trap of thinking that if you aren't seeing blood glucose spikes, then you are not eating too many carbs. All it means in that you still have a prompt insulin response, and you are kicking out enough insulin to prevent a spike, but it is still overshooting to cause the subsequent hypo. Your recent test results are proof of this.

The reality is that if you are getting hypos, you are still eating too many carbs.

What usually happens as people (and by people I mean people with glucose regulation dysfunction, like RHers and pre-diabetics and T2 diabetics) is that the more they continue with a carby starchy lifestyle including low GI foods, then the more they wear out their body's capacity to cope. Eventually that prompt insulin response gives up the ghost and they progress to worse blood glucose dysfunction, their health deteriorates, and their condition progresses.

I would urge you to make sensible dietary changes now, rather than wearing out your capacity in a shorter time.
 
Hi @Brunneria

Thanks for your message.

It seems I do not understand low-carb... Fruit and veg both fall into the carbohydrate category. So you are suggesting low-GI fruit and veg but cutting out all other carbs?

I guess I also don't want to commit to a major change until I definitely know what's causing it. RH is a symptom of something - and I understand that my pancreas is overreacting by producing too much insulin, but why is it doing that? And when I say I want to try low-GI before low-carb, I feel like that is a sensible approach. I have been living with this since childhood and I don't think a few more weeks or months of gradual changes will be my undoing.

I just read this article which is pretty useful: https://www.healthline.com/nutrition/low-glycemic-diet#factors-affecting-gi and it explains that you can still raise your BGLs if you have too much of something which is low GI.

The thing I'm feeling anxious about is how complex my diet and the restrictions will be as some of the recommendations for RH contradict the recommendations for GI problems associated with Ehlers Danlos like low fodmap.

But anyway I will let you know what the dietitian says on Thursday. I know the changes are necessary for my health but I'm finding it a little overwhelming.
 
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Hi,

You will find all sorts of info on low carb and keto here.
https://www.dietdoctor.com/low-carb/60-seconds
The site is not vegan, but the principles are the same, and it gives some good indications of where different plant foods lie on the carb scale.

Good luck with it all. I agree that it is a minefield! My own version of RH is virtually non existent if I scrupulously stay clear of gluten and grains. Even things like vinegars if they have a whiff of gluten about them. If I do that, my RH is easily avoided.
However, due to previous damage to my gut (years of gluten and susceptability to tummy upsets, etc) I now have to avoid all fodmaps and fibre too, and find a lot of veg problematic. I truly deeply wish that I had been stricter with carbs in previous decades, because I might be in a better state now. However, no one warned me that the damage from 'carb-abuse' would escalate over the decades. The info simply wasn't around then. So I knew no better. It is one of the reasons I mention it to people now!
 
Oh wow that sounds really tough. I'm glad you've found a diet that works for you now but yeah that must have been really difficult. It's so hard when there's more than one dysfunctional system isn't it?
 

I can understand what you are saying, even my specialist endocrinologist recommended low GI from my first appointment, but I was still having hypos after hypos, my daily intake for example, was porridge (rolled oat) no milk, no sugar just water.
For lunch I would have a low GI meat sandwich, and a banana. Or a baked potato with filling. Then for tea, meat and two vegetables always!
All this was the recommended diet for those like us, who had problems with hypoglycaemia. Eat every three hours to stop having bad hypos!
Because I had to keep a food diary, the evidence was unbelievable.
Regardless of how low GI I went, carbs regardless of GI levels were the trigger for the reaction of an overshoot.
Only very low carb would help stop this.

My dosage of that yukky stuff was 75g.
I have what is known now as 'Late Reactive Hypoglycaemia' which means my Hypoglycaemia happens later than yours after about three to four hours, hence the eat every three hours advice!
I believe that I have a more extreme overshoot than you, because of the higher glucose levels I get. I do eat a lot of salad vegetables but my intolerance to starchy vegetables is the worst, potatoes are the worst.
Fruit, I have a small apple every day, strawberries, raspberries as a dessert, in small portions, so you don't have to miss out on certain foods.
This is why a food diary is really important because by the results you can determine how your favourite foods affect you. There are more alternatives to meat and starchy carbs than you would believe.
For every carb there is an alternative very low carb alternative.
In my case a carb is a carb and does effect my reactive hypoglycaemia, because every time I have more than 5% carbs per meal, I will go hyper and then go hypo.
Their is a mechanism in your brain or gut that sends messages to and from your brain, this determines how much insulin response you get, it is different every time because of portion etc.
So many factors determine how your body uses insulin, but always too much because of the overshoot, insulin resistance, is not recommended, only stopping the overshoot by going very low carb will do this!

It is your choice in the end no matter who advises you, I can only offer my experience of this condition for the past decade or so.

Keep safe, keep asking and keep a food diary for a few months and then decide, this is a life time condition.
The main reason I stopped eating carbs as much as possible, was my health improved so much. I had to find my balance of protein, veg and fats.

If you are like me, only natural saturated fats can I tolerate. I have trouble digesting veg oils, Palm oils, olive oil and most other plant based oils. But this is me, not you!
Coconut oil is probably the best vegan alternative.

Best wishes
 
Hi @Lamont D

Thank you for sharing your experience, it's really helpful to hear what people have tried and been through and what works. I really hope low-GI can work for me but if not, I will definitely go low/no-carb.

So with your current diet can you go for like 6 hours say between meals or do you still have to eat every 3 hours, even with no carbs? I have to eat little and often which is fine sometimes but if I'm working (I'm not currently) it's really stressful to organise.
 

I can go for days without food if I want to!
Up until a couple of months ago, because of work, I didn't eat until mid morning when I had an apple with a few spoonfuls of full fat yoghurt, which is the only dairy I can tolerate, maybe a boiled egg with mushrooms at work. Then I would have something prepared, meat more than often not for lunch, then about six again a main meal something like fish or chicken with salad. I eat a lot of salad! Then nothing till the following day.
Since being furloughed and after or when I was on a day off, I would fast until about 3pm then have two meals following the same pattern, then not eat again till the next day. I don't ever eat a breakfast in the morning.
I gradually began to realise a couple of years after being diagnosed that being regimented in when I ate by the old standards of three square meals a day, breakfast is the important meal of the day and eating five fruit and five vegetables a day didn't work for me. Not eating for four days because of the 72 hours fasting test, and feeling absolutely brilliant was an awakening, something switched on in my head, this was something I needed to do after years of feeling really #!/£@!!!
Because I don't eat carbs, I don't go hypo, it is as simple as that.
No that is slightly wrong, I had the flu a couple of years back and that knocked me out of ketosis, my blood sugar levels rose too high and I knew what was happening.
Also, I have recently had anxiety issues, which I won't go into but my fasting blood glucose levels have started to rise and am waiting for blood panel results, so, yes it is a dietary intake issue that triggers the hypos but there is always other factors that can mess with trying to keep your control of blood sugar levels.

So, no, I do not need to eat every three hours!
I use very low carb and intermittent fasting, this is the only dietary advice that works for me.
A couple of questions just to get you thinking.
Why eat when you are not hungry?
Do you have to eat every three hours?
Can you fast, have you tried?
Have you had allergy tests?
Do you know which foods you are particularly intolerant to?
Are your lifestyle choices, by experience or by religion or by choice alone?

You may have to make important dietary choices in the future. It will depend on how you approach finding out and how you feel, do you want to be healthier?

You don't have to answer, but don't forget where you were before diagnosis and how you felt, what made you ask for help off the doctor for, because like me, you knew something wasn't right, there was something going on and you wanted to sort it out.

Keep safe, best wishes
 

Oh wow that's amazing! Do you prep your food for the week or are you in such a routine with it now that you don't really need to think about it? When you had your 72 hour test did you go hypo? I'm sorry to hear about your anxiety issues. I have mental health stuff going on as well and it's exhausting.

Generally I don't eat when I'm not hungry and the 3 hour marker is a rough estimate of how frequently I feel hungry or start to feel weak and shaky. I wasn't hungry earlier but I had a hypo so was forced to eat. Generally if I try to fast I just feel unwell and absolutely starving and then eventually will feel weak and shaky. Maybe when I change things up diet wise this will change but at the moment I can't even comprehend how people can do it. I've never had allergy tests, no. I know I'm intolerant to sugar re having a hypo, but I'm sure there are other things that don't agree with me, but I fear there are many.

My dietary choices i.e. not eating animal products are for ethical reasons, and I have, over the years, had a go at eating fish but always felt too guilty after 2 or 3 meals and cut it out again. Same with eggs. I'm not really sure what to do... It's going to have to be forever so it's a big decision. I guess that's why I want to take small steps because if that helps and I don't have to eat animal products that would be best for me and my conscious.
 

Hi again,
I get it!
Small baby steps, trial and error, the journey to discovery, what you need to learn, how low do you need to go, what is the best for you and more.

No, I didn't go hypo.despite best urging from my endocrinologist. From my first reading at 9am in the morning of going into hospital till I did my first reading out three days later after bacon and eggs in the hospital cafeteria. I didn't go above normal levels or more importantly below!

What you are saying about fasting is what I was referring to about how we are indoctrinated into thinking about eating all the time. In general we eat far too much, literally feasting every day, feeling real hunger is quite different than what you are getting used to feeling like when you feel the need to eat, starvation is far worse.
It is psychological. My intake is really low now compared to what it used to be before diagnosis. I believe that learning not to eat or adapting your body to keto is primarily a purpose to eat healthy when I have to, not because it's some dietary advice for those who do not have the same metabolism as RH ers have. My body does not like carbs, it rejects dairy, hates cooked greens and is ill when it eats grains and starchy vegetables. I'm weird by any standard. I need to do what I need to do to be healthy!
By the way, a lot of my personal experience is written in my blog. If you go to the top of the page and click on blogs and search for my blogs, you should be able to read my journey. I will update it when I am able.
If not I'll get @Brunneria to give you a link.

Take your time, do use a food diary, get your head around that you will eventually have to make those decisions about lifestyle choices and changes.
It is your journey, make the best decisions for you.

Keep safe
 

That's good you didn't go hypo. Rules out insulinoma.

I found your blog and I will check it out!

Thanks so much for sharing and your info, it's been really helpful to get my head around it a bit more
 
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