Does my Mum have RH? Please help!

[Squeakyclean]

Hi there, I’m totally new to this and wondered if someone with more experience could advise. My Mum experiences episodes of blacking out/losing consciousness and the pattern seems to be that this always happens at home, in the kitchen usually after eating food, sometimes 20 mins later, sometimes a few hrs later. This has being going on for a no of years and she’s had all sorts of neurological tests/heart checks all of which have come back clear. For a while now I’ve suspected this is food related as both my parents have a high sugar diet - lots of biscuits, sweet bread and cake after lunch and dinner. Mum does not have diabetes (although Dad has been diagnosed with pre diabetes). After Googling “crashing after eating sugar” I’ve come across Reactive Hypoglycaemia. Could this be what is occurring to my Mum? Like I say, the blackouts never happen outside of home which makes me think it’s diet related and she always comes round albeit a bit groggy for a while. During the day Mum can be incredibly sleepy and I wonder if she is experiencing RH symptoms all day long except none of the family have any idea of what’s going on. I have mentioned this to her GP and have arranged a meeting next week to discuss this but the GP already sounds vague/dismissive of the idea that this could be RH (simply because Mum doesn’t have diabetes). What do I say/ask for to push this along to be investigated further? Reading this forum people are clued up on monitoring their blood but Mum does none of this so we have nothing to back this up. It’s only my loose suspicion that RH is behind the blackouts. Would really appreciate any advice to ensure the GP takes me seriously and refers her somewhere (where??) to be checked further. Thanks so much for any help or advice you can give.

 

[Resurgam]

It is a possibility - you can get a meter to check on blood glucose levels - something like the Tee 2 device from Spirit healthcare, which is cheap to use - you need the pots of test strips as well as the machine and lancet etc. Which will enable the blood glucose levels to be checked. It will be useful for your father too - as he has prediabetes he might be able to order meter and supplies free of VAT. Maybe phone to check - Spirit Healthcare is a UK company.
Your doctor doesn't know anything about RH if he thinks that it is necessary to be diabetic to have it.

 

[Walking Girl]

Welcome to the forum. An oral glucose tolerance test is used to diagnose reactive hypoglycemia ( as well as various types of diabetes). It can’t be hugely expense, I don’t know what it’s like outside the U.S. but I can’t see why a doctor would strongly oppose it. Basically, the patient drinks a glucose drink, then blood glucose (and sometimes insulin) are measured each hour a few hours out. If it is RH, a big upswing and reactive low would be very evident. Good luck. It sounds very frightening.

edited to add: agree with Resurgam. RH and diabetes may be related, possibly. But, if so, it appears RH is a precursor to T2, not a result of it.

 

[JoKalsbeek]

Hi there, I’m totally new to this and wondered if someone with more experience could advise. My Mum experiences episodes of blacking out/losing consciousness and the pattern seems to be that this always happens at home, in the kitchen usually after eating food, sometimes 20 mins later, sometimes a few hrs later. This has being going on for a no of years and she’s had all sorts of neurological tests/heart checks all of which have come back clear. For a while now I’ve suspected this is food related as both my parents have a high sugar diet - lots of biscuits, sweet bread and cake after lunch and dinner. Mum does not have diabetes (although Dad has been diagnosed with pre diabetes). After Googling “crashing after eating sugar” I’ve come across Reactive Hypoglycaemia. Could this be what is occurring to my Mum? Like I say, the blackouts never happen outside of home which makes me think it’s diet related and she always comes round albeit a bit groggy for a while. During the day Mum can be incredibly sleepy and I wonder if she is experiencing RH symptoms all day long except none of the family have any idea of what’s going on. I have mentioned this to her GP and have arranged a meeting next week to discuss this but the GP already sounds vague/dismissive of the idea that this could be RH (simply because Mum doesn’t have diabetes). What do I say/ask for to push this along to be investigated further? Reading this forum people are clued up on monitoring their blood but Mum does none of this so we have nothing to back this up. It’s only my loose suspicion that RH is behind the blackouts. Would really appreciate any advice to ensure the GP takes me seriously and refers her somewhere (where??) to be checked further. Thanks so much for any help or advice you can give.

Another one here saying RH isn't a symptom of diabetes. It could mean your mom's overproducing insulin when she's having something with carbs though, and lots of insulin over time, can make one resistant to it.... And THEN you become prediabetic, and later a T2. Your mom'll want to get a meter and see what her bloods are going when she gets one of her spells, but once it's pretty much confirmed: The solution to RH and your dad's prediabetes is the same. A low carb diet. (Practically all carbs turn to glucose once ingested. Your dad's blood sugars wouldn't be going high, and your mom's pancreas wouldn't be overreacting and giving her lows. And if they do it together, they can pull each other through.). https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html is my own quick-start-guide for such a diet, dietdoctor.com is excellent, and this place's website, diabetes.co.uk. (not .org!). May want to read Dr. jason Fung's the Diabetes Code or watch his (free) youtube video's. Lots of GP's have no idea what RH is, so linking that to having to have T2 is a semi-common mistake. They just don't know. A long oral glucose tolerance test could bring some clarity. Good luck!
Jo

 

[Jaylee]

Hi @Squeakyclean ,

Welcome to the forum.

I'm certainly in no position to advise. & we can't diagnose on the forum
However, I'll tag in @Brunneria & @Lamont D . Who've had first hand experience.

 

[Brunneria]

Hi and welcome!

if your mum is experiencing blackouts, sleepiness or similar, on a regular basis, then she needs an explanation as to why it is happening. It could get dangerous, if she were driving, or even ironing during an episode. She really needs an answer.

as to the cause... yes, RH is a possibility, but then there are a lot of other possibilities too.

my suggestion is that your Mother goes back to the doc, stresses the potential risks, and asks for a referral (and keeps asking until she gets as many referrals as it takes to find the answer).

it would be easy to say ‘get you Mum a blood glucose testing kit and find out what her blood glucose is before, during and after one of these episodes’, but the reality is (in my experience) that docs take a very dim view of patients who do their own testing and then produce the results to ‘prove’ something. No idea whether your Mum’s doc would accept home test results or not.

RH is a funny thing. Most docs have never heard of it, and confuse it with T2, few endocrinologists seem to know about it. And the symptoms of RH masquerade as a lot of other things, leading to many misdiagnoses along the way.

and if/when you finally do get a diagnosis, the simplest and often the most reliable way to control RH is through simple, consistent dietary changes, tailored to the individual, usually a lower carb way of eating. Often doctors give the advice to eat carbs every 3 hours. That is, in my opinion, unhelpful and unsustainable, yet nearly everyone diagnosed with RH is sent off with that advice. For me, my life got much better when I ditched that thinking and went very low carb and ate less frequently. Each to their own, eh?

 

[Squeakyclean]

Thanks so much for the replies! It’s really appreciated. I will definitely be asking the GP about how we can get Mum the Oral Glucose test as that sounds a great starting point. My sis mentioned on the phone to the GP about getting a device to monitor blood sugar but was told “we wouldn’t provide that as your Mum doesn’t have diabetes” so I think I’ll def look into getting our own one for her as well as chat to the GP next week about it. Mum had a bad episode this week 20 mins or so after her lunch where she got up from the dinner table feeling weak (so she later told us), (after eating a load of sweet stuff including chocolate cake), stumbled into the kitchen work surface and then passed out. She came round after 15 mins or so but we got the ambulance to check her over but they took her off to A&E to x ray her as they thought she might have fractured a rib. As it is she has severely bruised ribs. Dr at A&E is sending her now for more neurological tests but this has been done before to no avail. This is yet another incident where it appears to me she seems to be reacting to something she has eaten but this is only my hunch. I would feel happier having this checked out to know for sure so I def intend to pursue this with the GP. Mum doesn’t drive for anyone reading this who might be concerned that she is allowed behind the wheel of a car. Thanks again for your responses and I’ll let you know how I get on.

 

[JoKalsbeek]

Thanks so much for the replies! It’s really appreciated. I will definitely be asking the GP about how we can get Mum the Oral Glucose test as that sounds a great starting point. My sis mentioned on the phone to the GP about getting a device to monitor blood sugar but was told “we wouldn’t provide that as your Mum doesn’t have diabetes” so I think I’ll def look into getting our own one for her as well as chat to the GP next week about it. Mum had a bad episode this week 20 mins or so after her lunch where she got up from the dinner table feeling weak (so she later told us), (after eating a load of sweet stuff including chocolate cake), stumbled into the kitchen work surface and then passed out. She came round after 15 mins or so but we got the ambulance to check her over but they took her off to A&E to x ray her as they thought she might have fractured a rib. As it is she has severely bruised ribs. Dr at A&E is sending her now for more neurological tests but this has been done before to no avail. This is yet another incident where it appears to me she seems to be reacting to something she has eaten but this is only my hunch. I would feel happier having this checked out to know for sure so I def intend to pursue this with the GP. Mum doesn’t drive for anyone reading this who might be concerned that she is allowed behind the wheel of a car. Thanks again for your responses and I’ll let you know how I get on.

Lots of sweet stuff and then the lights going out... Yeah, getting a meter would be a good bet. (A T2 doesn't get a funded meter either usually, unless they're on gliclazide-ish medication or insulin, so that GP really is full of it). Tee2 would be alright, as the strips are the expense, and those wouldn't cost an arm and a leg. If the doc doesn't co-operate with the OGTT, she could just try low carbing at home and see whether those episodes vanish. I know going the proper medical route has the preference, but if people start stonewalling, this is too serious to just let it go. Then it becomes time to experiment with foods and a meter, if left out in the cold. It's not just driving, if she falls and hits her head rather than her ribs.... You get the idea. Best of luck!
Jo

 

[Resurgam]

Get a meter and blame the need on the other one as in 'we used dad's meter to check mum when she was on the floor and it was such a number, do you think that was why?' - just be sure that a new lancet is always used to do the testing.

 

[Brunneria]

Well, if your Mum is given a glucose tolerance test, i expect it will only be for 2 hrs. Which is unlikely to catch an RH hypo, since they often take longer than 2 hrs to arrive.

5 hr GTT would be better, but doc surgeries are not set up for them (or even know about them).

I really hope you get somewhere with the new tests and referral.
You and your parents must be so very worried.
Best wishes to you all.

 

[Squeakyclean]

Thanks again for the responses. One positive change to happen is that I’ve actually managed to get Mum to take her sugar intake more seriously and from today she is keeping a food diary. First time ever. I’ve gone through all the sweet stuff in the cupboards and listed out the sugar content per item so everytime she eats a biscuit or a bun she knows exactly what she’s taking in. She’s aiming to keep the Hidden sugar to under 25grams per day until we can get to GP / get blood testing kit and she seems keen to keep it up. I’ve also persuaded her to change her breakfast from porridge with a big tablespoon of honey, then half a slice of toast with marmalade and half a banana to one boiled egg with one slice of whole meal toast and half a banana. Less sugar in the morning I figure.... but please advise if I’m wrong! My parents are Irish so for main meals it’s potatoes all the way (Dad really won’t eat anything else) along with carrots, parsnips, cabbage and not a lot of meat. Plus then all the biscuits, cake, buns etc. It will be a tall order to get them to change as they are in their 80’s and this is how they’ve always eaten!

 

[Rokaab]

First time ever. I’ve gone through all the sweet stuff in the cupboards and listed out the sugar content per item so everytime she eats a biscuit or a bun she knows exactly what she’s taking in.

If its just the sugar content you've noted you may want to relook and check out the carb amount as carbs all get turned into glucose anyways when you eat them.
For example a single Twirl chocolate bar has 12 carbs in it, but a slice of bread has 15-20

 

[Squeakyclean]

Goodness, thanks so much for that advice - I really am not clued up on this at all. I will go back and look at the carbs on the packets of things Mum eats, including the bread. I just looked at my own loaf of bread in my house and I see it’s 18.5g of carbs but 1.4g of sugar.

 

[Lamont D]

Hi and welcome to our forum,
Yes, it could be RH, but then again it might not be, it could be any one of related conditions that your mother's symptoms are a part of.
First, you will need a referral, because the tests necessary for non diabetic conditions that have hypoglycaemic episodes, needs a specialist endocrinologist.
A normal GP does not have the necessary skills to get a definitive diagnosis.
A extended oral glucose tolerance test, is to see if you do react to be intolerant to quick glucose. Then to see if you do have a hypoglycaemic episode. But again, this is only a step along the diagnosis.
Until the rest of tests are done and it can't be anything else, is RH diagnosed.
You mention that your mum has a 'turn' after about twenty minutes. There is a similar hypoglycaemic condition called, glucose dumping.
Glucose dumping syndrome happens in most hypoglycaemia conditions including RH! There are many reasons why, mostly due to hyperinsulinaemia, too much insulin.
A sugar crash happens to a lot of people, this is when, too much sugar/insulin spikes or drops your glucose levels quickly. It in itself is a symptom, but not a diagnosis.
RH is directly a reaction to certain foods, and how it copes with the quick glucose and the insulin response.

Symptoms atypical to RH, is directly related to the onset of T2 diabetes. Hyperinsulinaemia is the precursor to insulin resistance, higher hba1c levels and prediabetic levels then T2.

A food diary is a great idea, the information has to be concise, clear and controlled.

Let us know how you get on.

Best wishes.

 

[Squeakyclean]

Thanks so much for this advice, it will def help when at the Dr’s next week. I’ll be sure to let you know what the results are when (hopefully) we get the tests done.

 

[lindisfel]

Surely if one gets nowhere with medics it would seem appropriate to reduce carbohydrates in the diet, logging the amounts and results obtained!
D.

 

[Ellenor2000]

Well, if your Mum is given a glucose tolerance test, i expect it will only be for 2 hrs. Which is unlikely to catch an RH hypo, since they often take longer than 2 hrs to arrive.

5 hr GTT would be better, but doc surgeries are not set up for them (or even know about them).

I really hope you get somewhere with the new tests and referral.
You and your parents must be so very worried.
Best wishes to you all.

The way this is being described sounds to my uneducated ears like the crashing is happening at 120 min, not 300.

 

[Ellenor2000]

Hi and welcome to our forum,
Yes, it could be RH, but then again it might not be, it could be any one of related conditions that your mother's symptoms are a part of.
First, you will need a referral, because the tests necessary for non diabetic conditions that have hypoglycaemic episodes, needs a specialist endocrinologist.
A normal GP does not have the necessary skills to get a definitive diagnosis.
A extended oral glucose tolerance test, is to see if you do react to be intolerant to quick glucose. Then to see if you do have a hypoglycaemic episode. But again, this is only a step along the diagnosis.
Until the rest of tests are done and it can't be anything else, is RH diagnosed.
You mention that your mum has a 'turn' after about twenty minutes. There is a similar hypoglycaemic condition called, glucose dumping.
Glucose dumping syndrome happens in most hypoglycaemia conditions including RH! There are many reasons why, mostly due to hyperinsulinaemia, too much insulin.
A sugar crash happens to a lot of people, this is when, too much sugar/insulin spikes or drops your glucose levels quickly. It in itself is a symptom, but not a diagnosis.
RH is directly a reaction to certain foods, and how it copes with the quick glucose and the insulin response.

Symptoms atypical to RH, is directly related to the onset of T2 diabetes. Hyperinsulinaemia is the precursor to insulin resistance, higher hba1c levels and prediabetic levels then T2.

A food diary is a great idea, the information has to be concise, clear and controlled.

Let us know how you get on.

Best wishes.

Isn't glucose dumping technically called "oxyhyperglycemia" - sharp hyperglycemia from the meal? Isn't it usually caused by gastric dumping?

 

[Brunneria]

The way this is being described sounds to my uneducated ears like the crashing is happening at 120 min, not 300.

different people get hypos at different times, so a 5 hr GTT with regular tests during those 5 hrs, is (most likely) to catch them.

the times I have had a GTT, my hypos always hit about 30-60 mins after the 2 hr test finished - by which time I had left the surgery and was by myself in charge of a car. Very dangerous.

of course, since I had a good idea what was happening (even though my doc denied RH as a possibility) by the second test I knew to drive straight from the surgery to the nearest eatery, and was already eating a Full English by the time my bg dipped low enough to be dangerous to drive. A leisurely meal, a slow cuppa, and life (and my bg) were back on an even keel for the rest of the day.

 

[Lamont D]

Isn't glucose dumping technically called "oxyhyperglycemia" - sharp hyperglycemia from the meal? Isn't it usually caused by gastric dumping?

Yes, to both!
I think I meant glucose dumping syndrome, but it is the same.
Gastric dumping can be caused by insulin resistance and a weak initial insulin response despite having either high glucose (hyperglycaemia) or high insulin levels (hyperinsulinaemia) . Both can and does happen in hypoglycaemia. It can also occur in diabetic and metabolic syndrome conditions.
It is becoming more prevalent because of gastric bypass surgery.