Self-dx RH (under control) - what now?

[Blank.]

Hi people, feel free to just read and answer the part in bold. Rest is background.

I'm pretty sure I've got RH (do tell me from below if it sounds like I'm wrong), but I'm struggling to find out a piece of information - which is, do I need to act on my suspicions of RH? May there be an underlying condition causing this? Are there other things I should have checked out? Do I need it on my medical records? Or, as I've got things mostly under control, can I just ensure I'm well-informed and leave it as is?

I've had it since I was a child, and it runs in my family (I'm pretty sure I'm the 3rd or 4th generation at least, by what my probably-RH Dad says of deceased relatives), though we've only just figured out what the name for it is. Nobody has ever gone to a doctor about it.

Main symptoms appear in this order (though not the same every time, there's variation): tiredness, feeling a bit 'out of it', hot, sweating, intense hunger, weakness, shaking, difficult to think, difficult to take in sensory information (hearing, sight - about awareness rather than inability).
When it gets intense it's like very, very slowly going unconscious (which I've only actually done once, briefly), because it's like my brain can't pay attention to cognition and is turning it off bit by bit. I also can wake up in the night drenched in sweat, like I've been swimming.

Symptoms are often preceded by having eaten carbs or by not having eaten for a while, and can be swiftly reversed with carbs, BUT it has to be followed by other food, and there's a risk because too much carbs just make it come back soon after. It used to be the case that I could often get solidly into (and stray beyond) the 'difficult to think' stage, and hold a prediction that I would pass out within 20 minutes if I did not eat.

My Dad heard of hypoglycaemia from a diabetic colleague. To look into our suspicions I wanted to catch it in the act and lifted controls. First event was just starting to stray beyond 'weakness' above, checked my levels, 2.5 mmol/L. Second event was just starting to stray beyond 'shaking' above, checked my levels, 1.9 mmol/L. As I live alone I don't particularly want to test it further than that, to be honest!

I control it by creating fat/protein-y buffers and watching those carbs. I've flipped my day on its head: I eat my main meal of the day for breakfast (something hearty, like sausages and beans) - this allows me to have some flexibility in the day, whereas before anything would make my body flip out. I don't start the day on a sweet or end it on a sweet. I try to not eat carbs in isolation - if I eat carbs, I'll try and have something non-carby during, or soon before/after it. The worst offenders are severely limited or permanently removed altogether.

Lifting the controls has given me a scary reminder in how unpredictable my life used to be. I still need to be careful, watch my symptoms and react as necessary, but I have it pretty stable now. It's still a constant process, to better my habits though and put it further away

 

[Lamont D]

Hi, and welcome to the forum.
As far as I'm aware only tests can give you a diagnosis.
I've had them to give me mine.
First is usually a prolonged oral glucose tolerance test. (OGTT).
Second is a prolonged (72 hour) fasting test.

So the first is to see if you hypo after drinking a certain amount of glucose and your reactions to the load. Your bloods will be taken before and after at regular intervals., also bloods will be sent to the lab, to see what is going on and discount others conditions.
The second test is also to eliminate other possible condition such as pancreatitis.
If you don't go hypo, you are definitely RH!
You should get an normal hba1c level from a blood test from your GP.

Yes, you should get a referral from your GP, to an endocrinologist who knows what rare blood glucose disorders actually are.
RH is not common and most GPs don't know and are not trained to recognise RH or Hypoglycaemia! Even some specialist endocrinologist don't know what it is.

Your first paragraph describes my hypo hell stage before I got diagnosis.
There so many symptoms because of the fluctuating blood glucose levels. The rapid rise in blood glucose because the glucose we derive from carbs and sugars get ingested too quickly and we keep getting insulin as we should do, with or without the glucose. So, it is the insulin that sends are blood glucose levels down to Hypoglycaemia.
So from being in normal range before we eat, the carbs and sugars we eat, send our blood glucose levels up very quickly (hyper) the excess insulin drops our blood glucose levels down into lows (hypos).
So what is happening is we go yo up and down all day which leads to all the symptoms we get.
There is a list in the basic information on this forum.

So how do we (who give advice) control (really key word) our RH.
Well we get control because we eat very low carb diet (lifestyle).
In fact if we have more than 50g of carbs, we are not be sensible, it is not easy, nor something we have to do, but we choose to do it because it makes us get rid of all the symptoms. We go into ketosis.(look it up).
Basically our blood glucose levels do not go very far from normal. This is because if we don't hyper, we don't hypo. My last hypo was from an OGTT, many months ago, and never had one for over a year now other than that one. I feel great and have so much energy,.
Please read the rest of the threads in our forum, also for food ideas and recipes, look at the low carb forum.
As for your medical records, I would definitely get the reason why you are struggling if it is RH! My endocrinologist advised me to wear a medical warning, I have a necklace with RH on it and advice on a card on how to treat me if I am in need of medical help.
Hope this helps.
Ask questions, if your not sure about anything.

 

[Brunneria]

Hi and welcome @Blank.

Well, you know, of course, that we can't diagnose, and can't give medical advice?
But having said that, your symptoms and coping mechanisms sound very, very familiar.

I have had RH since childhood, although i understand that most childhood RH sorts itself out. Mine didn't.

Re diagnosis and possible consequences on non diagnosis... I am not the best person to advise, since i have never been persistent enough to push through for a diagnosis (gave up in exasperation after my doc decided it was all in my maladjusted head).

I will tag @nosher8355 for his opinion. I would guess that insulinoma would be the best reason to go for a diagnosis. That and eliminating other potentially serious issues.

Would you say your symptoms are worsening with time? Or is your control now steady, or improving?

Edited to add: oops, nosher beat me to it!

 

[lindisfel]

Hi Blank,
I self diagnosed by my meter and found I peaked at 1 hour after first bite. I didn't stop exercise hypos ( when walking round shops and mowing lawn) at c. 2 hours and plus until I went proper low carb on less than 50 grams/day last sept. I have not had any hypos since and they stopped immediately I went low carb. I hypoed in am and afternoon if I was active when I had bread and potatoes etc and I didn't need much carb.
​

D.

 

[Blank.]

Woah, you guys responded to my thread fast, even though I posted half an essay. Thank you!

@nosher8355
Thanks - that's especially helpful knowing what the process is, if it's something a GP isn't going to know so well about.

Although it might be best if I don't go immediately. I'm currently waiting for assessment by shrinks (yeah, I've reached that point in my life that I'm fixing myself) - whilst my mental health issues aren't anything delusional/hypochondriac/etc., I'm worried I would just be fobbed off due to them.

Ooh, low carb recipes might be worth my while looking at

When I found out the word and began googling, I found a tale on reddit of someone having to leave hospital before they were ready, because the nurses wouldn't listen to them and they were having a hypo. Things like that are scary, and I guess less likely to happen if it's on record.

@Brunneria

Yes, don't worry I know that I see 'self-dx' and 'others saying it sounds recognisable' as meaning "this is an educated guess and may be very useful in management of one's condition, but is fallible, and is not remotely to the same level and weight as a proper medical diagnosis".

With your doctor, that's what I fear somewhat!

With the same lifestyle, my symptoms are the same. However, I've gradually worked on it. It took a lot of time to work out what caused it, and longer to find ways to manage it. I'm getting there, though I still need to kick the want for sweet things. It's so much better now due to management than it used to be!

@lindisfel
I haven't used my meter currently any times other than when experiencing symptoms, maybe I should try it around other times.
****, you had such a good response from going proper low carb? I mean, I thought I had mine under control, but the concept of just stopping the whole thing...

 

[Brunneria]

It sounds rather like you and I share a life history.

I Mean, when you are like it all your life, it is normal. And you just learn what does and doesn't work, over time. Must be very different getting rh as an adult - much more likely to knock the doctors door down demanding they solve it.

I learned to lowcarb over about 30 years of trial and error. But the last 3 years of very low carb ketogenic eating has been every bit as liberating as @lindisfel says.

You've obviously found the rh board of the forum. Lots of threads here that might interest you. And the low carb section is great too.

 

[Blank.]

@Brunneria

I came to this section directly from google - trying to find a forum of people talking about it, and kept hitting dead links and very general health forums until I hit here. Haven't really been around the rest of the forum, so I'll take a look

Yeah, I don't know any different. Because I've been like this as long as I can remember, and management was gradual, it's not until I actually think about it that I realise how much is part of preventing, becoming aware of, or addressing symptoms before I get knocked over the edge.

In fact, I thought it was completely normal. Especially the lighter side of it - it was a shock to me to learn around age 15 that "overheating" was not what people meant by "I'm hungry". Because I'm used to doing things like sitting on a train and looking at what everyone else is wearing - if they're wrapped up in jackets, I gotta eat, if they've taken their coats off, the train just needs better air conditioning.

I find it surprising and amusing to discover that it's actually a pretty **** rare thing. I tried bringing it up when I was a kid, but my mother outright ridiculed me because what I described was totally normal and me even being interested in quirks was making a fuss etc. etc. Which didn't really help, to be honest. Remember one occasion particularly when we were in a museum, and I was like "I gotta eat", "no, I really gotta eat", to no avail. Got to the point that I don't even know how I was still standing, I was on the very edge of consciousness. Then she tore me a new one because I didn't hold a door open (due to lacking awareness that there were other people or a door because I was barely conscious).

So yeah. This whole thing is a bit "you're all talking like this is real and legitimate. Woah."

 

[Brunneria]

Oh yes.

My mother used to take us shopping or for a day out, and apparently used to have to time the 'sit downs' and the snacks according to how white and shaking I was. But since this was the 70s most of the snacks were sugar filled treats, so I used to bounce around like a ping pong ball, sugar high hyper, then white and shaking hypo. And they all thought I was a moody little brat because I would ignore them and 'pretend' I hadn't heard, when in fact I was standing there like a ghost faced zombie. Or I hid food for when The Hunger hit. Or I ate more than my fair share in one of the feeding frenzies...
And my goodness, I hate stairs. Ever noticed that you ALWAYS have to climb stairs when you are hypoing? Even 3 steps can wipe you out...

Anyway, don't worry. You have hit the Good Times.
This forum.
Ketosis.
It just gets better and better.

Here is a link to the RH board thread list.
http://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/

 

[Lamont D]

Thanks for giving us some more details of your history and of course Brun is such a source of good knowledge that I really didn't want to reply but something you posted stood out from the rest.
Mental conditions are symptomatic with RH.
No one has really studied the consequences of really badly controlled RH.
But even all the other types of blood glucose disorders have some form of mental dysfunction. Mine was extreme anxiety!
I have read this forum and the number of posters with a form of depression and anxiety and lots of others like forgetfulness, memory loss, not remembering stuff.
Also anger, rage, grumpy, mood swings and the like.
Because many of the symptoms of RH is somewhat like other medical conditions and you can have RH on top of others, doctors haven't got a clue.
I was lucky, I found an endocrinologist who knew what was going on.

 

[Brunneria]

Good point, @nosher8355

I went for (guessing about 15) years thinking I had some kind of binge eating disorder, with accompanying depression and mood swings, and self respect issues, because I was simply unable to stop the binge-fast-binge cycle. Then I discovered low carbing, and the emotional stuff just... disappeared.

No idea how much was actually 'real' emotional, but a heck of a lot was chemical due to the hypers and hypos, which was knocking me about so that I felt dreadful, which then made me feel worthless and depressed. Much steadier now. It doesn't help that we all seem to experience hypos differently. I specialise in psychotic rage with a depressed weepy aftermath. Kind of like PMT on steroids.

 

[Lamont D]

It is different for all of us and it is interesting how it does affect us.
When I get close to not eating for too long and I get tired, I still get grumpy.
I also can't remember things (old age maybe) it's really annoying trying to talk to someone intelligently (yeah I know) and you can't find a word, name or describe what you are on about. Especially, like me, you know a subject really well. I'm always better after food. @Brunneria, it is hormonal, so it's no surprise that male and female responses to blood levels.
I will discuss this aspect of how mental problems affect fluctuating blood glucose levels with my endocrinologist, but that's not till May, if I remember!!!!

Good point, @nosher8355

I went for (guessing about 15) years thinking I had some kind of binge eating disorder, with accompanying depression and mood swings, and self respect issues, because I was simply unable to stop the binge-fast-binge cycle. Then I discovered low carbing, and the emotional stuff just... disappeared.

No idea how much was actually 'real' emotional, but a heck of a lot was chemical due to the hypers and hypos, which was knocking me about so that I felt dreadful, which then made me feel worthless and depressed. Much steadier now. It doesn't help that we all seem to experience hypos differently. I specialise in psychotic rage with a depressed weepy aftermath. Kind of like PMT on steroids.

 

[Brunneria]

I get the word loss thing too. And numb cheekbones, ***! And slow reaction times, and positively hopeless decision making. I should NEVER drive when low. Or cook. Or set the tv recorder. Or post on here.

But I don't get the sweating other ppl talk about, for which I am profoundly greatful!

 

[Lamont D]

OMG, you don't get the sweating?

How do you cope with the heating bills?

I was at work this morning and out in the beautiful February morning, but I had my thermals on. And I'm now toasting myself by the fire, watching the footie and posting.

Bloody freezing I was!
I don't miss the heatwave of sweating all the time! Hell no!

Now that I think of it, hell was a right phrase, what I call my hypo hell, cos I was so warm all the time. It was like being in that place.

 

[Brunneria]

When I am in ketosis, I don't feel the cold. Went out for a dog walk this afternoon in a skirt, t shirt and knitted cardigan. Icy wind. Hands got cold, but it was chilly, not freezing (remember I am still obese). I was quite comfortable.

I do feel the heat, terribly, especially in humid weather. Summer is not my favourite time of year.

But I don't get hypo sweats, except sometimes in bed at 2am, in a kind of hot flush way.

 

[Lamont D]

I was definitely born in the wrong place, I would love to live in a moderately hot climate, my skin is olive brown naturally. I love sitting in the sun. I love working outdoors in the sun, when it's hot, I hate wearing layers of clothes just to go out, wether it be work, shopping, footie or dog walks. It is a real pain in the morning when I'm not working, putting loads of layers to go out for half an hour, then strip off again, to be comfortable in the house, I could live in shorts!

I've even said to my GP, that I have seasonal adjusted disorder, and could he on the NHS, fly me and the wife to somewhere beneficial for both of us, say, Australia for the winter months. Bet you can't guess what he said?

 

[Blank.]

Ooh - my Dad has serious anxiety problems.

I'm going to see shrinks to ask about possibilities of symptoms in the regions of PTSD and depersonalisation disorder. It's got a cause, so pretty sure it's not made by RH, though there is of course the possibility that it can be involved still in symptoms coming out and intensity of them etc.
My memory is utterly atrocious though, so it's interesting to see that on your list.

I'm no fan of the cold, thanks to Raynaud's.

 

[Lamont D]

Hi again, any condition that interacts with RH, must have some weird effects on the body. The high levels of insulin are not good for us. We need it but not that much.
If so much is going on as you have described then you never know, what will happen if you get rid of what is causing the excess insulin in your blood for quite a while.

On my list, there is a possibility that some symptoms are missing, I gathered that list from an number of sources. Some of those have a few that are in all of us, but some are unique, then if you add the hormonal effect on the body, it's a recipe for ' hypo hell' if it's not controlled.

Keep learning and gather information, the more understanding you get, it will benefit you. Keep posting your progress as we learn from you.

 

[Blank.]

I'll stick around I'm probably not going to go down the way of full-on low-carb, at least not in the near future, but I am too reliant on carbs with meals based on pasta, rice or bread. I want to see what happens when it's substantially decreased.

 

[Lamont D]

Glad you're sticking around.

Reduce your carbs slowly.

How can you eat them baddies?
Sweating just thinking about them.
There are alternatives.

I use Bergen bread, soya and linseed, about 9gms a slice, nice toasted!
If you have to have rice, only eat a small portion, same with pasta, watch out for them sauces, they have hidden sugars.

Still can't believe you eat them! Wow! Lol!

 

[Blank.]

I try to patch it around with meaty things and such, and ride that. It means that I am constantly dipping into the early hypo stages, but I can knock it back and keep it from going into hell like it always did when I was a kid. But as a kid, I didn't even know what caused it, so I had no chance!

Like, right now I am eating not because I am wanting to eat, but because can feel my temperature going up, and waking up in sweat is vile. But I don't get to almost passing out any more, because I can recognise it and stop it before I plummet - it's now more an annoyance than an issue.