Reactive Hypoglycaemia

[Heidiaa]

can anyone help? I'm new here and have been getting symptoms for around 2 years( I am 20). I was diagnosed with idiopathic around a year ago and have had poor treatment since. My consultant believes that RH is 'normal' and there is no treatment, although he says there is medication but isn't able to give it to me.

As I am very active in my job I have very frequent hypos and if i don't eat carbs find it very hard to function. A dietician gave my breif advice of eating snacks under 15g carbs every few hours which I find hard as I am a student nurse who can only eat packaged foods e.g. Special k bar. My consultant is doing nothing for me despite me putting on a huge amount of weight and I am really struggling.

Does anyone have any advice please? I am also in the north west, does anyone have a good endocrinology private or NHS that has knowledge of rh?

 

[Kaz261]

Hi and welcome to the forum.

Your Consultant is right in that there currently is no treatment (in terms of medication) specifically for treating RH, but it can be controlled well with diet.

Most follow a lchf way of eating, with the theory being that if you avoid the hyper or blood glucose spike, you avoid the hypo.

I also don't function well without carbs, but I have found I can tolerate a small amount with each meal, depending how much protein and fat is included. Eating every 2-3 hours should also help.

Snacks for me tend to be a very small apple, a small pear, 3/4 grapes, or nuts (I have dry roasted peanuts if I need a few carbs). Pre packed snacks are a little more tricky as they tend to contain more carbs/sugar as I'm sure you will know. You can get peanut protein type bars that aren't too bad; 9 bars, or Nature Valley do a peanut and sunflower seed protein bar and a salted caramel peanut protein bar (I only eat half of this at a time)that don't affect my bs much at all, but keep me steady for a couple of hours.

Have you got a meter so you can test your sugar levels to see what different foods are doing to your levels?

I think @Lamont D has a very good Endocrinologist based somewhere in the North. I may have that wrong but I'm sure he'll be along soon to advise.

 

[Heidiaa]

Hi and welcome to the forum.

Your Consultant is right in that there currently is no treatment (in terms of medication) specifically for treating RH, but it can be controlled well with diet.

Most follow a lchf way of eating, with the theory being that if you avoid the hyper or blood glucose spike, you avoid the hypo.

I also don't function well without carbs, but I have found I can tolerate a small amount with each meal, depending how much protein and fat is included. Eating every 2-3 hours should also help.

Snacks for me tend to be a very small apple, a small pear, 3/4 grapes, or nuts (I have dry roasted peanuts if I need a few carbs). Pre packed snacks are a little more tricky as they tend to contain more carbs/sugar as I'm sure you will know. You can get peanut protein type bars that aren't too bad; 9 bars, or Nature Valley do a peanut and sunflower seed protein bar and a salted caramel peanut protein bar (I only eat half of this at a time)that don't affect my bs much at all, but keep me steady for a couple of hours.

Have you got a meter so you can test your sugar levels to see what different foods are doing to your levels?

I think @Lamont D has a very good Endocrinologist based somewhere in the North. I may have that wrong but I'm sure he'll be along soon to advise.

Thank you! I tend to eat every 2-3 hours but as I'm very active and don't get much time to eat I'm eating the exact peanut bar you suggested along with other snacks below 15g of carbs. However I am putting on a lot of weight (15kilos) in a short space of time from it!

My consultant has said that there is medication but there isn't much research to say that it works. I was thinking that maybe there is medication to reduce absorption time from small intestine into blood which would stop hyper therefore stop hypo?

Also what are examples of your meals, I struggle to plan these too! I think I need to find a good dietician and consultant who can help due to me being active and not able to eat for long periods for example if I have a day in surgery!

I do have a glucose monitor but hardly use it as I don't know when to test!

 

[Kaz261]

I lost lots of weight in the early days and it took ages to start gaining again. Now I am also finding it difficult to maintain my weight without putting on more than I would like. Unfortunately nuts and nut bars are quite calorific.

The theory about meds to reduce absorption time sounds feasible, but I couldn't advise what, if Amy are available. My Endo didn't recommend anything other than Metformin, which I don't believe is the right option.

Breakfast for me is usually full fat Greek yogurt with berries, almonds, a small amount of no addd sugar muesli (dried fruit removed) and cinnamon. At weekends I might have bacon and eggs etc.

Lunch is either a salad, with a decent amount of protein and fat from mayo, coleslaw etc. I always have a thin slice of a low GI bread with it as I needs a few slow(ish) release carbs. Alternatively, I have something egg based. Omelette/frittata type things are good for packed lunches I find.

Dinner varies so much. Meat and veg, with two small roast or new potatoes. I can tolerate a very small (max 150g uncooked) jacket potato with a salad and some protein. I'm also ok with up to 100g cooked weight of wholegrain/wholemeal rice or pasta. Again with protein and usually a side salad. Celeriac is a good, lower carb alternative to potato. I roast it or make chips with it. Not as nice as the real thing but I still have a few normal chips too.

I make pizza using Lidl high protein rolls and have half with a salad and a couple of small slices of normal pizza.

I fine with all of this, but many RHers couldn't tolerate anywhere near this amount, so it may not work for you.

I would test your bg just before first bite, then again at one hour to see the spike and then again 2 hours after first bite to see how well your body has dealt with the meal. If you're including carbs then you may not hypo until 3 or 4 hours from first bite, so it maybe worth checking again later if you've not eaten again.

If you can fund one, the Freestyle Libra is brilliant. It has helped me enormously in understanding my condition and how to control it. Have a read up on it. It would make checking your bg at work much easier given the job you do.

I wouldn't get too hopeful about seeing a dietitian. Mine just gave me the standard advice currently given to diabetics, which is to include plenty of low GI carbs with every meal and to eat every 2 hours. I followed this advice until joining this forum and made very little progress.

@Lamont D follows a strict lchf diet and also has a physically demanding job. I'm sure he may be able to advise further.

 

[Lamont D]

can anyone help? I'm new here and have been getting symptoms for around 2 years( I am 20). I was diagnosed with idiopathic around a year ago and have had poor treatment since. My consultant believes that RH is 'normal' and there is no treatment, although he says there is medication but isn't able to give it to me.

As I am very active in my job I have very frequent hypos and if i don't eat carbs find it very hard to function. A dietician gave my breif advice of eating snacks under 15g carbs every few hours which I find hard as I am a student nurse who can only eat packaged foods e.g. Special k bar. My consultant is doing nothing for me despite me putting on a huge amount of weight and I am really struggling.

Does anyone have any advice please? I am also in the north west, does anyone have a good endocrinology private or NHS that has knowledge of rh?

Hi and welcome,

@Kaz261 is correct that there is no cure or magic pill to help stop the RH symptoms.
But it's all to do with what you put in your mouth.
I eat very low carb and due to the lack of carbs I don't hyper, so don't hypo!
RH is not called idiopathic any more because they know now what causes the 'reactive' pert of the condition. It is due to your pancreas overshoot in the secondary insulin response.
I do have an endocrinologist in the Manchester area, if you like his hospital, I will pm you, and then get a referral, he still thinks that carbs should be part of your diet but I have been persuasive due to the fact that I haven't had a hypo for about three years now! I do fasting and do work full time!

The weight gain is from your excessive insulin in your blood (hyperinsulinaemia) that turns into visceral fat. Mainly because of insulin resistance!
Very Low carb will be beneficial to you in this way as well!

Having got through this thread, put time to reading the other threads, as, this will help with how you approach treating the condition.

You may also look in the low carb forum, for ideas on snacks and how to prepare your meals at work. Though like you, I get busy and I find missing a meal, doesn't do any harm if you have a low carb meal previously.
How do you treat the hypos when you get one?

 

[Lamont D]

I had it in my late teens 20's once in a while. Sometimes it would come on real bad after a high fat meal (with or without carbs). I felt all my energy was drained out of me, sweaty, extremely shaky and dying from hunger even if I just ate. I felt beyond craving sugar but felt almost like it was a matter of life or death. I would get to the nearest store for a bag of Chocolate chip cookies and a quart of chocolate milk. I was told I would get Type 2 later in life because that is a warning sign that my beta cells would burn out and die of exhaustion eventually. I did not develop Type 2 until my middle 50's so I guess the nurse was right...sort of. I was overweight, out of shape and ate terribly so I would've developed Type 2 most likely anyway. Repeatedly being hypoglycemic however would no doubt indicate a chronic high insulin which will hasten diabetes because of resistance to insulin developing.

Hi and welcome, we do have a few posters that have RH as well as T2, so if you want some questions answered ease ask. We have found like yourself that it is very individual how we react and what our body only just needs. I eat very few carbs as I've found that I am fitter and healthier doing so.
I am always fascinated by, the reason behind why the medical practitioners don't test for high insulin levels, (hyperinsulinaemia) as it is a precursor to prediabetes and T2!

Do you still get hypos?

 

[Winnie53]

When I experienced hypoglycemia in my 20's, I would carry fresh or dried fruit with and raw nuts with me if I'd be delayed more than 3 - 4 hours in eating my next meal.

The best advice I received from my doctor was to include protein with all meals. That made a huge difference for me. Eggs, meat, poultry, fish, or seafood worked best for me.

Today, it seems like it's become common to eat meals made up primarily of rice or noodles. That would have made me absolutely miserable. I do better with protein, veggies, and whole fruit. If I had a treat, I always had it with a meal, not by itself.

I think the idea of reducing carbs is a good one. I have type 2 and have been eating low carb for two years with excellent results. I wish I'd used a glucose meter in my 20's. Knowing my glucose level is so empowering. In the USA, I can get a meter for $9, a lancing devise for $6, and 100 strips for $18. Very affordable.

 

[BVA17]

can anyone help? I'm new here and have been getting symptoms for around 2 years( I am 20). I was diagnosed with idiopathic around a year ago and have had poor treatment since. My consultant believes that RH is 'normal' and there is no treatment, although he says there is medication but isn't able to give it to me.

As I am very active in my job I have very frequent hypos and if i don't eat carbs find it very hard to function. A dietician gave my breif advice of eating snacks under 15g carbs every few hours which I find hard as I am a student nurse who can only eat packaged foods e.g. Special k bar. My consultant is doing nothing for me despite me putting on a huge amount of weight and I am really struggling.

Does anyone have any advice please? I am also in the north west, does anyone have a good endocrinology private or NHS that has knowledge of rh?

 

[BVA17]

Hi, I am from the US and had RH and was treated with Metaformin XR, the medication did work and also helped me to lose weight and improved my insulin response. I was able to come off the meds after the weight loss.

 

[freshlybrewed]

Hi Everyone, (it's been a while) so I thought I'd check in and say hi. It's nice to see this thread still going. Last year I tried coming off LCHF to see how I got along with increased carbs. Almost immediately I struggled to control putting on weight and got fed-up of feeling hungry all the time. Towards the end I had Gastritis every time I ate anything with carbs in it, ie bread, cereal etc. and of course the horrid RH creeping back in. So meh... who needs carbs anyway. I had a ceremonial final eating of a Carrot cake, loved every bit of it, felt sick afterwards though, all the sugar and that's that, I'm back on LCHF and enjoying every moment of it. Ketostix dark brown confirmation yesterday. Gastritis totally gone within a week and zero RH.

 

[Brunneria]

What wonderful news @freshlybrewed !

- well, not wonderful that you have to stick to lchf - i am sure we would all rather we could eat whatever we liked - but wonderful that what you are doing is WORKING!
Am delighted for you.

Oh, and don't give up on cake. I haven't. The last three lc cakes i baked averaged about 6g carbs a slice. I kid you not!
https://www.lowcarbmaven.com/low-carb-classic-carrot-cake/

 

[freshlybrewed]

That Carrot Cake recipe looks promising, thanks for that. Not sure I've seen all the ingredients over here in the UK, but I'll see what I can find and ask around.

 

[DevonVee]

Lots of health food shops stock ingredients or on line like amazon.

 

[hooha]

If you wish to ask questions or are interested in asking anything pertaining to hypoglycaemia, diabetic or non diabetic. Ask here.

HI L D -
I just read your blog. Yes the medical ' establishment ' is full of plodders following an out -of -date script.

Read the stories of Prof Chris Noakes and surgeon Dr Gary Fettke and see what happened to them when they tried to improve the diet of their patients . A Ghastly Story like something out of the McCarthy Witch Hunt Trials.

My GP is such a twerp. I really want to poke him one in the nose. But I don't. For the moment... cheers.

 

[Mollynell1]

Hi just looking for a little advice again When I had my oral glucose test, I was really feeling under the weather when I got home with severe shakes/jelly legs and very faint! What should I have eaten when I got home and was it ok for me to sleep it off, which is what I did, for most of the day. I was home alone which was a little unnerving as I was feeling so light headed.

 

[Brunneria]

Hi just looking for a little advice again When I had my oral glucose test, I was really feeling under the weather when I got home with severe shakes/jelly legs and very faint! What should I have eaten when I got home and was it ok for me to sleep it off, which is what I did, for most of the day. I was home alone which was a little unnerving as I was feeling so light headed.

After my last 2 hr OGTT test I felt awful. But I knew it was going to happen, and I had planned accordingly.
My lovely husband had come with me and he drove straight out of the doc's carpark and 400 yards down the road into the carpark of a pub that serves food.
It was about 11.30am and they were still serving breakfast, which meant I could have sausage, bacon, egg, beans, mushroom and tomato.
I still felt rubbish - but the breakfast staved off the incoming hypo.
And as I sat there eating, my eyesight went blurry. So bad that I didn't feel safe to drive and rang in to take the rest of the day off work. Spent it on the sofa, like a zombie, with the TV on in the background, but not watching it. Ended up taking the next day off too.

I have politely refused all Glucose Tolerance Tests since, because I suspect that my reaction would be worse now, and I don't intend to lose 3 days, unable to read, drive or watch telly, with a 2 day headache and assorted lethargy, black mood and depression.

My doc thinks I am mad, and can't believe an OGTT will produce that effect. But then the man doesn't have RH, does he? lol

 

[Mollynell1]

Your reaction sounds very much like mine. I drove my car 3 miles home out of town. I totally know this was the wrong thing to do now but I really didn't know what was happening at the time as this was my test before I was diagnosed. It also took me a couple of days to get over it. I had a bowl of cereal when I got home, which I guess made things even worse! Thank you for your reply and I definitely won't be agreeing to another OGTT either.

 

[Lamont D]

Your reaction sounds very much like mine. I drove my car 3 miles home out of town. I totally know this was the wrong thing to do now but I really didn't know what was happening at the time as this was my test before I was diagnosed. It also took me a couple of days to get over it. I had a bowl of cereal when I got home, which I guess made things even worse! Thank you for your reply and I definitely won't be agreeing to another OGTT either.

I have had about five eOGTT tests and everyone of them has floored me, the more control you have, the worse it gets, the lower it goes, it is even worse.
Having really good awareness of going hyper and then hypo is one of the benefits of having the condition long and not going out of normal (ish) levels.
I always have something very low carb and sleep them off.
I like Brun, have a good old fry up after a couple of them as this will satisfy and placate any other symptoms. After my fasting test in hospital (72 hours), I had a big fry up in the hospital cafeteria. Best meal ever!

 

[Mollynell1]

I have had about five eOGTT tests and everyone of them has floored me, the more control you have, the worse it gets, the lower it goes, it is even worse.
Having really good awareness of going hyper and then hypo is one of the benefits of having the condition long and not going out of normal (ish) levels.
I always have something very low carb and sleep them off.
I like Brun, have a good old fry up after a couple of them as this will satisfy and placate any other symptoms. After my fasting test in hospital (72 hours), I had a big fry up in the hospital cafeteria. Best meal ever!

Gosh I thought 12 hrs was bad enough, can't imagine 72. Fry up it is then, now at least I know what to eat if it happens again. Thank you Brun and Lamont

 

[Lamont D]

Gosh I thought 12 hrs was bad enough, can't imagine 72. Fry up it is then, now at least I know what to eat if it happens again. Thank you Brun and Lamont

The fasting test is to rule out other pancreatic conditions, I had one because my endocrinologist was being thorough because I was a bit of a guinea pig for a research paper he was doing. Actually it was just on 80 hours because of a mix up between my endocrinologist, a staff nurse and a pharmacist. My endocrinologist was not pleased.
It made the fry up taste even better.