Please help! Anyone been told this by a GP??

[KerryWilloughby]

I'll try and keep this brief...
I was diagnosed with reactive hypoglycemia approx 10 years ago with an extended glucose tolerance test and was advised small, regular low GI meals as the way to manage symptoms.
I've gone back to my gp this week as it's been getting worse this last year and I've had to go low carb, and now very low carb diet. Also this past month my symptoms have changed that when I have something I shouldn't e.g. Some apple or a few new potatoes I'm now nauseous and not wanting to eat alongside all the other symptoms whereas I used to be starving hungry during these episodes.

I basically went to see if I am now diabetic or if there were new drugs that can help RH as I now only way 2 meals a day and am worried about getting nutrients in as I'm not eating any fruit other than the odd handful of berries.

***The Dr has booked me in for a fasting blood test but also said I need to go back to eating small, regular low GI meals again for a week because due to me restricting my diet more and more I am making my symptoms worse as I'm creating an intolerance to carbs.
She thinks I'll feel awful for a few days but by the end of the week might start feeling better as I build up a tolerance to carbs again.

Is she right?? Can that happen?? I'm going to try it because if I don't I don't think they will continue to help me, but I'm just curious if anyone has tried it?****

Not sure how much I trust her judgement as she also said that it sounded like there was a psychological issue going on too because I said it's got to the point that I'm scared to eat an apple in case it makes me feel ill!
She also said it was ridiculous that I only have 2 meals a day and don't eat from 6pm to 12pm the next day, even though I only do it because it makes me feel better! And let's face it loads of people don't eat breakfast!

Anyone know if it might actually help doing what she's saying? Think I'm going to have to try regardless...

Thank you all in advance, it's so nice to see people who have the same thing as no one's ever heard of RH!!

 

[NoCrbs4Me]

She is right. On a low carb diet, a person can develop "physiological insulin resistance". Essentially, temporary insulin resistance that goes away once you reintroduce carbs into your diet for a few days. So, if you do an OGTT while on a low carb diet, you might get a false positive for diabetes. However, if you do one after eating carbs again, it should be an extended one again.

Also, since you probably still have reactive hypoglycemia, it may not be very pleasant to start eating carbs again.

With regards to eating twice a day, that should be fine, as long as you're eating enough.

 

[himtoo]

hi @KerryWilloughby !!!

welcome to the forum !!
RH is a tough one to deal with -- I am tagging @Lamont D and @Linagirl
to offer some support

hugs [[[hugs]]]

 

[Bluetit1802]

Hi and welcome!

I don't have RH but I do know that we are all intolerant to carbs already, whether we eat them or not, because too many make us feel ill and they all raise our blood sugar levels. Why would we eat something that we are intolerant to, or that makes us ill? With RH you will struggle if you eat too many carbs, even low GI ones, because your pancreas will over-produce insulin that will bring your levels down with a crash. (as you must know from experience).

Plenty of us don't eat fruit. I don't, other than half a dozen strawberries in a week. We get our nutrients from other foods.

Which nutrients in particular do you think you are missing out on? Have you any symptoms of vitamin or mineral deficiency?

Eating twice a day is fine. As you say, plenty of people do it. I do. All I have for breakfast is a coffee with double cream, then nothing till gone 1pm when I have lunch.

Is it only nutrients you are worried about? How are you feeling in general on low carb? If you are managing well with no RH hiccups, why change? You know your body better than your doctor does.

I'm tagging @Lamont D and @Brunneria who may have better advice for you.

 

[Brunneria]

Hi and welcome!

Well, my experience with RH is that the lower carb i went, the better i felt.
I flourished on one or two very low carb higher fat meals a day, especially when I was on less than 20g carbs across both this meals. Felt great.
But then the medical mantra of 'eat carbs, low GI carbs, every 3 hours' never worked for me. My body and my personality much prefer proper meals, much less often than that. But they have to be very low carb or i feel dreadful, no matter how often I eat.

And for me, an apple would have been too many fast acting carbs in one hit, since a large apple could easily have 30+ grams of carbs.

As for your doc saying that it is necessary to eat carbs... Nope. It isn't.
Going very low carb and then reintroducing carbs does cause issues to start with, because it takes a while for the body to readjust.
Whether you will feel better in the long run will depend on whether your new increased intake of carbs is enough to trigger your RH. If it does trigger it, you will feel dreadful, long term.
If it doesn't trigger it, then you will have to count carbs and monitor very carefully, to avoid accidently over-carbing, which will trigger it anyway.
But you may be able to find a middle comfort zone of more carbs and steady blood glucose, which would be great.

So, if you want to follow your doc's advice, then go for it. Your experience will (hopefully) be better than mine when I have done such things. It is worth trying.

Do you have a meter so that you can track your blood glucose and have evidence of any hypos and hypers that may occur?

 

[KerryWilloughby]

Thank you all for your speedy replies. I'll trial it for a week and see... In the hope I build up some tolerance.
I don't have any symptoms of deficiency, guess I just think in my head I'm only eating 2 meals a day and minimal fruit and dairy other than cheese.
The main reason I went to the gp again is because I was worried I might now have diabetes, and because I thought in the last 10 years there may have been some change of advice regarding diet or supplements that can help, so that I can live on a less restrictive diet...

But looking on here it doesn't seem like that's the case unfortunately

 

[KerryWilloughby]

I just got a meter this week so will be interesting to see highs and lows when eating carbs, as eating a low carb chicken meal last week my blood sugar went from 4.9 pre meal to 8.9 2 hours post meal which I believe is on the high side still for 2 hours post. Especially for a low carb meal.

How long after meals would you suggest testing? Wasn't sure whether to test at 1 hour too...

 

[Brunneria]

Carbs release quickly, and the spike is often inside the first hour, so just testing at 2 hours wont show the peak, although comparing 1 and 2 hour reading may give you an idea of whether you are dropping, and how fast.

If your experience is like mine, spotting the peak may well give you an indication of whether you have a hypo incoming.
For me, the higher and faster the initial spike, the harder and lower the resulting hypo.
I found all of this out using a Freestyle Libre, rather than finger prick testing, but if you can spot the peak, i think you will find it very informative.

Hope that helps!

 

[DCUKMod]

@KerryWilloughby - I don't have RH, and others are giving you some good guidance here, so I'll leave that to one side.

One thing you might like to have a ponder over is the "last meal effect".

In reality our bodies like routine, and have usual amounts , which deliver usual reactions . From a digestion standpoint, our systems are sort of prepared to create the digestive juices and enzymes we require to eat those usual foods. If we go "off plan", for whatever reason (could be error, preference for a treat, or a special occasion, say), and add something higher carb, or meaning our total carbs for the day jump a bit, our bodies can be caught off guard, to to speak, and not create the full range or amounts of digestive juices or enzymes it requires to metabolise what we have eaten, to our personal level of efficiency. If that excursion from routine involved hit a of carb, our numbers can go up disproportionately high, and possibly have other symptoms, like feeling a bit off.

I think most of us will have experienced something a bit similar, maybe at Christmas (How could I say the C word in July?!??), for example, when we might eat just generally more, or add in a few treats, and then feel a bit bloated with or without indigestion for a while. If we tested at those times our numbers might also be higher than usual.

If we repeated that process, for a few days, the feelings and numbers mightn't be quite so pronounced, or high, as a few days pass, as our bodies adjust to the new normal, by producing more digestive juices. Principally, that's why for an OGTT, for low carbers, it is important have something like 130gr of carb for a few weeks beforehand. Without that period of familiarisation, the results can be skewed.

If your blood test is just a fasting blood glucose test there's no real necessity to carb up, as you would have to for an OGTT. That's not advising you defy your Doc's recommended plan of action, just clarifying, I hope.

Apologies for the long rambling response, but its late and I'd had a very long drive. Clearly it has impacted my ability to be clear and succinct!

I do hope you can gain some insight into what's actually going on for you, and welcome to the forum.

 

[Lamont D]

Hi and welcome to our RH forum.

Everything above is so relative about how to live a decent life with this condition.

I have 'Late Reactive Hypoglycaemia'. Which means that I have a very similar condition to yours though no two or exactly alike, the symptoms differ from each of us.
Eating every three hours is great advice if you can tolerate some carbs but in my experience it can't be right. I can't tolerate even a little amount but I can eat little pieces of fruit throughout the day. I eat very low carb. I eat only when I want, I fast, using intermittent fasting as much as I can.
The logic in not initiating excess insulin is what drives me, it also makes me healthy.
The relief that not having to think about food all the time is so enlightening!

My endocrinologist put me on a drug called Januvia, otherwise known as sitagliptin.
What it does is change the chemistry of the release of the first insulin response.
That prevents the spike going too high, thus preventing the hypo if I don't eat obviously. But I don't have to eat every three hours if I don't have carbs!
My endocrinologist is still adamant that I should have a certain amount of carbs but I don't!! I'm perfectly happy without them and healthier.

You are currently on a viscous circle because you eat too many carbs which produces the hyper and of course the excess insulin which rebounds to a hypo if you don't eat. The symptoms are caused by the fluctuating blood glucose levels, up and down all day. It's no wonder you are frustrated and feel that everything is s#!t.

You say you are having a fasting test, I take it, the test will be an extended fasting test. 72 hours in hospital?
I have had that, it's hard at first but well worth it because it eliminates other pancreatic conditions.
One of the good things to come out of it, is how clear your brain becomes. Very lucid.

Testing is so important, finding your spike and seeing what foods you can tolerate and seeing the trends in your food diary.
A simple thing like a food diary over your ten years of struggling would have helped so much, not only to you but your doctors.

The thing about doctors is the amount of research is pretty poor regarding RH.
They can only follow what is in the text books, even this site in its description on the home page says eat every three hours. It helps some but not others.

We do have to find what works for us individually, the balance of what we eat is important and always we have to be so careful about the portion size and exercise can be beneficial to how our bodies cope. Doing a fifteen minutes walk after eating is so good.

Do have a look around and get the knowledge necessary to really control your condition like I have.

Very low carb works.

Again welcome to our unique club!

 

[KerryWilloughby]

Thank you all so much, it really makes me want to cry reading that I'm not alone and you all know what it's like!

Unfortunately it's literally a 12 hour fasting blood test so nothing particularly helpful other than to see if I'm actually diabetic.
Not sure if it will lead to a extended OGTT down the line like last time though.

Going low carb I felt the best I had in years. And felt like I didn't realise how bad I had been feeling until I wasn't anymore.
It obviously works for me and I can't wait to get back to it now. Just want all of this over and done with and would be nice if they could give me some sort of medication to help me be able to have a slightly more varied diet, but if not I just want to get back to my low carbing and intermittent fasting.

My gp actually scoffed when I told her I eat 2 meals a day

 

[Lamont D]

No you are certainly not alone in this!

Thank you all so much, it really makes me want to cry reading that I'm not alone and you all know what it's like!

Unfortunately it's literally a 12 hour fasting blood test so nothing particularly helpful other than to see if I'm actually diabetic.
Not sure if it will lead to a extended OGTT down the line like last time though.

Going low carb I felt the best I had in years. And felt like I didn't realise how bad I had been feeling until I wasn't anymore.
It obviously works for me and I can't wait to get back to it now. Just want all of this over and done with and would be nice if they could give me some sort of medication to help me be able to have a slightly more varied diet, but if not I just want to get back to my low carbing and intermittent fasting.

My gp actually scoffed when I told her I eat 2 meals a day

The fasting blood test will probably not throw up any clues or prognosis uses they include c-peptide, GAD or for a test checking insulin levels.
It should have been done on your eOGTT, that's when I got mine done.
If you feel better doing it your way, most GPs should not argue or criticise you for trying to be healthy or feel better.
I still get a little criticism myself because it's Easier to say I stay away from carbs, but that's there problem not mine!
Having the knowledge and doing what works for you is more important.
Keep asking and let us know how you get on.

Best wishes

 

[KerryWilloughby]

Since this is the first time testing my blood sugars I thought I'd ask...
Had 9.6 45 mins post meal (which is when I seem to peak), then 9.1 at 60 mins post meal to check whether it was still going up.
Just checked again now because I Im starting to feel rough and it's 4.7 30 mins later.
So it's dropped from 9.1 - 4.7 in 30 mins. Is that abnormally fast for a drop? Or is that what most people do?
Also I'm not sure if 9.6 is high for a peak either... Not much info about non-diabetics peaks around.

Grateful for any insights about what these results are telling me!

 

[Brunneria]

Learning stuff already! Result!

I don't think there is much mileage in asking whether 9 is high, because there are a lot of people who go higher, but the key thing is if you get to 9 and then drop sharply (and yes, a drop like that is a fairly sharp one) and it makes you feel rough, then it is something worth avoiding in future. Also, keep testing. Just because you were at 4.7 doesn't been that you had bottomed out. You may go lower, and it is worth recording.

With RH there are several factors which affect things - the speed of the rise, the speed of the drop, how you feel, what you ate, what you ate it with, and whether it causes a hypo, or a feeling of hypo because of the speed of the drop.

For me (and remember, I can only speak for myself because we RHers vary a great deal)
I could cope with a 9 and not hypo IF the meal had enough fat, fibre and protein in it to make a slow hump blood glucose curve, rather than a sharp rise and fall.
But eating low fat carbs, without protein or fibre will give me a classic sharp rise and drop followed by a hypo at lower than 9.

Also, for me, certain foods (the ones containing gluten) will give me a much greater chance of a hypo and feeling grotty.

Hope that helps!

So, what did you eat?
And have you recorded it, including the portion sizes and the timings?
Keeping a record is a lot of phaff, but it really is useful when you start to see the patterns emerge.

 

[Lamont D]

Hi, that is quite a drop!
But probably a normal spike, it depends on what you ate!
If it was carb laden then I've had higher spikes, if it wasn't that high carb, then it's about right (how do you tell?) If it was low or lower, then it is rather high.
The way you tell, is by keeping a food diary and recording everything.
And if that was only a few carbs in your meal, then that particular food needs to be avoided. I know it sounds complicated but you have to do this for quite a long time until you know what not to eat. It's all about experience and experimenting.
The usual suspects are the likes of starchy vegetables, anything with flour, other grains including rice and pasta. And finding other intolerant foods such as dairy for me because the lactose is too much to kick in my insulin response.
You have to avoid low fat foods, these are laden with sugars. Full fat foods are really healthy for us.
Best wishes.

 

[KerryWilloughby]

I'm keeping a strict food diary and blood sugar diary this week while I'm trialling the reintroduction of low GI carbs (at my drs request).

This is following my low carb diet I've been doing since November so to be fair my body isn't used to carbs so I guess it may settle down in time.
This was following a meal with a small portion of basmati rice which I've not had since before November.

I've felt the worst I've felt today for a long time having carbs again! Even when my sugars were within the normal range I've just wanted to sleep and had no energy to do anything all day!

Will keep testing. And am looking forward to seeing what my numbers are like when I'm back on low carb again too!
Will be so interesting to see which foods effect me more without having to get to the point where I feel unwell to realise certain foods are a no no!

Thank you all

 

[NoCrbs4Me]

Did you weigh the basmati rice? i.e. how small is "small"? I think 9.6 is quite high.

Did you keep measuring your BG to see how low it went after it got to 4.7?

 

[KerryWilloughby]

I had 45g uncooked weight of the rice. So not a huge portion that I would have had back in the day! But certainly more than the none or one mouthful I would allow myself nowadays.

I didn't test again after the 4.7 as within 10 mins I was feeling much better so I assumed that was the low and my blood sugar was now stabilising.

 

[1Kirstygrace]

I'm keeping a strict food diary and blood sugar diary this week while I'm trialling the reintroduction of low GI carbs (at my drs request).

This is following my low carb diet I've been doing since November so to be fair my body isn't used to carbs so I guess it may settle down in time.
This was following a meal with a small portion of basmati rice which I've not had since before November.

I've felt the worst I've felt today for a long time having carbs again! Even when my sugars were within the normal range I've just wanted to sleep and had no energy to do anything all day!

Will keep testing. And am looking forward to seeing what my numbers are like when I'm back on low carb again too!
Will be so interesting to see which foods effect me more without having to get to the point where I feel unwell to realise certain foods are a no no!

Thank you all

Am I correct in thinking; If you eliminated carbs more or less completely for so long, your body will have to switch 'back' from Ketosis (burning fats for fuel) back to burning carbs and glucose as its prime energy source? This could be contributing to feeling so rubbishy if you're in that transition adjustment stage (?)
- I do know I haven't found a doctor or dietitian yet who hasn't ''sung of their guessing NHS songsheet'' on giving advice of how best to manage RH. I've had some pretty ridiculous advice in the last few weeks alone and just found trial and error and keeping my own records, finding what works for me personally to be the best way forwards. The nausea could be due to stomach acid I wonder as our stomachs aren't really designed to be so carb/roughage free, especially for so long.. When I was on very low carb/carb free I know I got a lot of nausea and found it better when I have small aounts of brown rice and maybe an oatcake here and there throughout the day to dry that 'urrgh' feeling up. Fruits also turned my stomach especially acidy ones. (Just thinking out loud here!) Hope you can find your feet again!

 

[ringi]

basmati rice increased BG more then eating a log of sugar.