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Reactive Hypoglycaemia

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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SueinLincs

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Hi everyone, I'm new here. I don't actually have diabetes I have a condition called Reactive Hypoglycaemia which basically means that the minute I put a carb in my mouth I'm on a rollercoaster where my blood glucose will shoot up then my pancreas will release too much insulin and my glucose will crash and unless I have something else to eat before I reach 3.5 which is usually anywhere from 45 minutes to 1.5 hours, I will go into a hypo. Anyone else on here suffer from this?
 
Welcome @SueinLincs 🙂 I think @TheClockworkDodo has a partner with Reactive Hypoglycaemia. They mentioned it on a recent thread.

How were you diagnosed with RH? Are you under a consultant? Do you have a special diet to follow?
 
Hi @SueinLincs and welcome 🙂

Inka is right, my partner has RH - he is now managing it very well, but it used to be very difficult before he learned how to cope, I would find him sitting shaking on the kitchen floor and have to feed him dried fruit. How are you getting on with it? Let me know if you need any tips.
 
Hi @SueinLincs and welcome to the forum.
Reactive Hypoglycaemia is like a worse form of T2 Diabetes. The difference is that in a T2D the pancreas won't (usually) produce enough insulin to both overcome insulin resistance and drive Blood Glucose down beyond normal levels into the dangerous hypo range.

Until somebody with RH comes along with advice, my 2p worth is that you should:
A) Avoid carb containing food as much as possible - eat meat, fish, eggs, hard cheese and ultra low carb veg such as leafy greens, celery, cucumber etc.
B). Use your BG meter to test your reaction at short intervals after eating a food with carbs in order to find ones which cause the least (slowest) reaction. These will then be the ones to eat both to halt the path to a hypo and will be the safest cars to eat for a 'normal meal'.

As a Type 2 I can say that we are all different in our reaction to carbs. Some T2's can eat apples or carrots, but they spike my BG far too much to eat more than half of one. And I can't even consider porridge, bread, rice, fruit juice or tropical fruit. Yet some T2's actually have a small portion of porridge (or even All Bran) for breakfast without harm.
This is why I suggest you discover which foods work as a low GI in your digestive system. They may be ones that aren't obvious because the truth is that the GI of a food depends upon who exactly is eating it!
 
Inka said:
Welcome @SueinLincs 🙂 I think @TheClockworkDodo has a partner with Reactive Hypoglycaemia. They mentioned it on a recent thread.

How were you diagnosed with RH? Are you under a consultant? Do you have a special diet to follow?
Click to expand...
Hi Inka, I realised I had RH last year. I had a gastric bypass in 2019 and about a 18 months ago I started feeling really drained and exhausted and starving hungry all the time. I couldn't work out what was going on then one day I was naughty and had pancakes and syrup and about 1.5 hours later I suddenly felt drained and started sweating and shaking. My husband is T2 so I recognised this as signs of a hypo and used his monitor to check my blood glucose and it was 3.5 so I asked google why I would have a hypo after eating sugar and found out about RH. In all the research I did before my bypass this had never been mentioned. I knew about dumping syndrome but nowhere had I seen it mentioned that I'd have a hypo if I put 1 carb in my mouth! It's been a bit of a rollercoaster ride and I've had to research and work everything out for myself. My GP wouldn't even prescribe me a monitor because I'm not diabetic despite the fact that I need to check my blood more often than a diabetic so I had to purchase my own. Luckily one kind GP did agree to prescribe the sticks for me as they cost a fortune. In August last year I bought a Libre 2 and that has been a real game changer, especially with the alerts but at £50 every 2 weeks it's a lot of money. I had a glucose tolerance test on 1st December. The endocrinologist must have spent all of 5 minutes with me if that. After chasing for the results all I had was a run down of what my glucose levels were after 1, 2 and 3 hours. They didn't actually correspond with my daily life at all and all he said was that I had impaired glucose tolerance and enclosed a badly photo-copied advice sheet where half had been cut off saying eat 6 small meals a day and giving me a list of things to avoid. All of this I had already found out for myself. I wrote a stinking letter to him and my GP saying that no-one had bothered to actually find out how this actually affects me and if I ate 6 small meals a day I'd be having multiple hypos because I can't go more than an hour between meals. Ideally I would eat keto but I just can't do it as I don't like that kind of food enough to exist on it. I started trying not to eat until after 2pm but couldn't keep that up so now I start eating later in the morning about 10.30 and stick to nuts and seeds with no sugar almond milk, cheese and eggs and there's a protein shake I can tolerate so I stick to this for as long as I can and don't eat any carbs till late afternoon. Not the ideal way of managing it but up until last week I had only had 1 hypo this year and I was feeling a lot better. I can't figure out what happened last week, I was feeling drained all week so my boss told me to have Thursday afternoon off and have a sleep and despite the fact that I'd only had nuts and seeds I had a hypo in my sleep with terrible dreams and woke up feeling suicidal. That's the second time I've felt suicidal after a bad hypo. If I catch them and treat them I usually just feel like c**p for the rest of the day but these two have really frightened me. I think if I was on my own I may have done it. I don't usually have suicidal feelings so this has been really scary.
 
I’ve heard of RH as a rare complication of such gastric surgery, so it is recognised and I’d hope there was some proven way of dealing with it. Bear with me as I think I remember something about this before on the forum but I’ll have to trawl back to find it.

Was the consultant you saw the same one who did your bypass surgery?
 
SueinLincs said:
Hi Inka, I realised I had RH last year. I had a gastric bypass in 2019 and about a 18 months ago I started feeling really drained and exhausted and starving hungry all the time. I couldn't work out what was going on then one day I was naughty and had pancakes and syrup and about 1.5 hours later I suddenly felt drained and started sweating and shaking. My husband is T2 so I recognised this as signs of a hypo and used his monitor to check my blood glucose and it was 3.5 so I asked google why I would have a hypo after eating sugar and found out about RH. In all the research I did before my bypass this had never been mentioned. I knew about dumping syndrome but nowhere had I seen it mentioned that I'd have a hypo if I put 1 carb in my mouth! It's been a bit of a rollercoaster ride and I've had to research and work everything out for myself. My GP wouldn't even prescribe me a monitor because I'm not diabetic despite the fact that I need to check my blood more often than a diabetic so I had to purchase my own. Luckily one kind GP did agree to prescribe the sticks for me as they cost a fortune. In August last year I bought a Libre 2 and that has been a real game changer, especially with the alerts but at £50 every 2 weeks it's a lot of money. I had a glucose tolerance test on 1st December. The endocrinologist must have spent all of 5 minutes with me if that. After chasing for the results all I had was a run down of what my glucose levels were after 1, 2 and 3 hours. They didn't actually correspond with my daily life at all and all he said was that I had impaired glucose tolerance and enclosed a badly photo-copied advice sheet where half had been cut off saying eat 6 small meals a day and giving me a list of things to avoid. All of this I had already found out for myself. I wrote a stinking letter to him and my GP saying that no-one had bothered to actually find out how this actually affects me and if I ate 6 small meals a day I'd be having multiple hypos because I can't go more than an hour between meals. Ideally I would eat keto but I just can't do it as I don't like that kind of food enough to exist on it. I started trying not to eat until after 2pm but couldn't keep that up so now I start eating later in the morning about 10.30 and stick to nuts and seeds with no sugar almond milk, cheese and eggs and there's a protein shake I can tolerate so I stick to this for as long as I can and don't eat any carbs till late afternoon. Not the ideal way of managing it but up until last week I had only had 1 hypo this year and I was feeling a lot better. I can't figure out what happened last week, I was feeling drained all week so my boss told me to have Thursday afternoon off and have a sleep and despite the fact that I'd only had nuts and seeds I had a hypo in my sleep with terrible dreams and woke up feeling suicidal. That's the second time I've felt suicidal after a bad hypo. If I catch them and treat them I usually just feel like c**p for the rest of the day but these two have really frightened me. I think if I was on my own I may have done it. I don't usually have suicidal feelings so this has been really scary.
Click to expand...
Hi Sue,

Sorry to hear about all this. Sounds tough.

I was talking to a joiner about 4 months ago, he was telling me that besides been off work for 2 months with covid, he had also started getting cold, sweaty and shaky after eating and was eating a mars bar to feel better again. I said to him it sounded like reactive hypoglycaemia. Anyway off he went, he said after looking into it was just what he was experiencing. Like you have done, I recommended the freestyle libre to him, as this would give him and any doctor evidence of what is happening to his blood sugars after eating.

Regarding the "lows" you are getting, this is common when blood sugars are low. I think it depends also on how you are feeling generally, if you are feeling good, a lowish blood sugar may not be too troublesome, but if one's mood is already low, a hypo would be felt much more severely. In those circumstance you have to dig deep, try and stay rational and in control and just go into auto pilot and fix the hypo asap. It is "only" a temporary situation, which can be aleviated with some food.

Look after yourself.
 
Inka said:
I’ve heard of RH as a rare complication of such gastric surgery, so it is recognised and I’d hope there was some proven way of dealing with it. Bear with me as I think I remember something about this before on the forum but I’ll have to trawl back to find it.

Was the consultant you saw the same one who did your bypass surgery?
Click to expand...
Thank you Inka. From what I’ve found out through various Facebook groups is that you are very much on your own with this. Doctors don’t care and what makes me really mad is that smokers who can spend up to £15 on a pack of fags can get free stop smoking medication yet I can’t even get a monitor for a condition that has a hugely adverse effect on my life. I had my surgery in Belgium so I don’t see my surgeon. I saw an NHS consultant who was useless. Since I complained he’s referring me to someone at Addenbrooks for further tests on my thyroid. I know it’s up to me to manage my condition but having to pay £100+ a month for a monitor won’t be sustainable long term. It just feels like I’ve been left hanging and no one gives a dam yet smokers and obese people can get free treatment that they can easily afford on the nhs.
 
I think the only medication licensed in the UK is Acarbose which has horrible side effects. I use my Libre 2 to monitor my glucose levels and eat something when I get to 4 but if I have a hypo in my sleep there’s not a lot I can do. The suicidal feelings are scarey, I know it can make you feel low but these are overwhelming.
 
SueinLincs said:
I think the only medication licensed in the UK is Acarbose which has horrible side effects. I use my Libre 2 to monitor my glucose levels and eat something when I get to 4 but if I have a hypo in my sleep there’s not a lot I can do. The suicidal feelings are scarey, I know it can make you feel low but these are overwhelming.
Click to expand...
Hi Sue,

The libre 2 has alarms. I have my low alarm set at a 5.5. This helps avoid goining into 4's later. If alarm goes at 5.5 AND the trend arrow is pointing down, then it's time to treat the impending hypo.
 
I don't think it sounds as though R's RH is as bad as yours, but his experience of diagnosis was much the same - he was basically told he could starve to death and should always carry some fruit with him in case, and then sent on his way. He wasn't given any other advice or anything helpful like a glucose meter either. This was many years before the Libre and it didn't occur to him to buy himself a meter, so he just followed the advice and always carried fruit with him, and often had to eat it to treat hypos because without any tests or anything to show him what was going on he had no clue how RH worked.

A few years ago, I think coincidentally about the time I was diagnosed with diabetes, he learned more about it and how to manage it - he now does most of the things in the treatment section of this article - https://en.wikipedia.org/wiki/Reactive_hypoglycemia - and finds that they help a lot, especially splitting all his meals (he does manage with 6 or 7), always eating fat with his carbs, supplementing with inulin for extra fibre, exercising regularly, and eating something fatty (usually a yogurt) just before bed, which helps prevent him waking up hypo in the middle of the night. It sounds as though these sorts of things are insufficient for you though, so I really hope the people at Addenbrookes will be able to help you. It's a good hospital (it's where I ended up when I first got diabetes), though I found the diabetes specialist nurses more helpful than the consultants when it came to dealing with anything complicated (my diabetes is peculiar and I'm juggling it with other conditions).
 
I had been doing well with the Libre 2 but last week just came out of the blue after a few weeks of feeling good. I know there’s no magic cure and I have to work out what works for me but not even helping me with a monitor so annoying when they can throw money away giving smokers stop smoking drugs and obese people free Weight Watchers. If they can afford to buy fags and enough food to get that big they can afford their own nicotine patches and weight watchers.
 
So sorry to hear what a tough time you are having @SueinLincs

Do make sure your Dr knows the intensity of your suicidal feelings as I am sure they will take those seriously. We want to help and support you on the forum too. You are not alone.

There’s some information about RH from the East Sussex NHS trust here which you might find helpful (you may have found it already)


And please do remember that if you are getting overwhelmed by feelings you can always talk to the Samaritans in complete confidence.
You can call the any time 24/7 on 116123.

Also, our Helpline is here to talk through your feelings, worries, and your blood glucose management. You can call the Helpline during office hours Monday to Friday 9-6 on 0345 123 2399.
 
SueinLincs said:
I had been doing well with the Libre 2 but last week just came out of the blue after a few weeks of feeling good. I know there’s no magic cure and I have to work out what works for me but not even helping me with a monitor so annoying when they can throw money away giving smokers stop smoking drugs and obese people free Weight Watchers. If they can afford to buy fags and enough food to get that big they can afford their own nicotine patches and weight watchers.
Click to expand...
I can’t believe what I’m reading and how offensive this is, literally lost for words at how to respond
 
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