Non Diabetic - How low should I worry about? Scared of not waking up

[HarleyRH]

Hey guys, thank you so much for the replies, I will try to explain more.

I can drink more than water! And I do try to eat sometimes but it’s mainly halo top ice cream as the fat content in other ones makes me sick. I also eat beetroot and some very light bread type things (crackers, mini tortilla etc) so I do have some intake just not very much!

I could split my feeds, that’s a great idea.

I’ve just spoken to my doctor who is right now, writing my referral to endo, my GI cancelled my appointment with them after he did the synachten test. He said it was interesting that it never really goes above 5.2 (unless I’ve had a lot of glucose! But that lasts minutes) I’m not convinced that I have reactive hypoglycaemia. It happens all the time, not just when I have any feed or food and I think he’s catching on to that as well. I just don’t know what’s wrong.

No, I cannot be roused. This has been a long standing thing though, I can’t be roused at all when I’m sleeping quite a lot of the time.

Thank you again for all of the advice. Tbh just talking to people about it is something i really needed.

I’ll have a look for the macros of my feed.

 

[HarleyRH]

My weight is really pretty stable at the moment surprisingly.

 

[slip]

I think @donnellysdogs might be able to give some in site to gastroparesis and views on your BG levels

 

[donnellysdogs]

Sorry,
Having RH and a glucose drip just doesn't make sense to me.
The last thing you need when having RH, is more glucose.
This would trigger the excess insulin that is created to cope with the excess glucose.
Why do you have a glucose drip?
Is it to feed you?

I would imagine that this is why there is a conflict between your doctor's.

I have been told that I should never have glucose or a glucagon jab if I go too low.
Fortunately I am not aware that I've done that.

Just a thought. Since my battle started some fifteen or so years ago, I have been told numerous times by every dietician, dsn, GP and specialist that I need a certain amount of carbs/glucose to live.
Well, do you know what?
I don't.
I use a ketogenic diet and intermittent fasting to get my health on track.
I would still be in a state if I had listened to these experts.
They said to me that a ketogenic lifestyle would be bad for me.
It has solved all my health problems. I don't have hypos no more. My body is happier and healthier on the balance of foods I have.

Maybe you need some thinking outside the box about your conditions and get some really good lifestyle advice in how to cope with what is happening to you.

Best wishes

This may be good advice for someone that can eat proper foods and meals but not with these extensive GP problems.

 

[donnellysdogs]

0.9 is actually higher than LO.

Have they check your electrolytes?

How long has then been like this?

Yes, the libre can read low over night than you actually are, it would be good to have an acual blood test done. But if the 0.9 and LO is on a meter then your gastroenterologist should really be getting hold of a enterologist urgently and having an MDT meeting.

You need to discuss these readings urgently with your gastro consultant and ask him for RH tests.

I would be suggesting that you have glucogel rubbed into your gums as well. This can be prescribed.

Your feed needs to be adjusted.

What can you take orally for your 500?? This may be adaped easier but without knowing what you take its hard to suggest...

 

[donnellysdogs]

0.9 and LO is dangerously low. I would be calling medics at these levels...

How long after these levels do they rise?

Can your feed be pushed through at different speeds?

 

[HarleyRH]

The 0.9 and “lo”s have only happened a couple of times (that I’ve caught!) to be fair it came back up to the 3s within half an hour but at that point I had been drinking a lot of monster glucose drinks to try and bring it back up (before I’d been told it was reactive).

For my 500 it’s usually beetroot salad, something bready ,soup and/or very low fat ice cream.

I can eat well cooked vegetables like mushrooms and peppers but have a problem tolerating heavy veg like potatoes. I can generally only eat things that are very low fat and in really small quantities.

@donnellysdogs Yes, it can be pushed at different speeds but my max is about 100ml an hour.

Electrolytes have been checked and as far as I’m aware, the last time it was just urea that was low. I had bloods done last week but it was in hospital so no one told me the results

Oh and exercise (like brisk walking if I can manage it) brings it up, not down

 

[HarleyRH]

Oh and my GP is trying to get me seen urgently by endo, my GI rarely has any appointments, my next one with him is in April. I’m waiting on a surgically placed tube which could happen before then.

 

[HarleyRH]

As far as I’m aware, it’s been like this for a couple of months, however that’s just as long as I’ve been testing but I’ve come to the realisation that a lot of my dizzyness, night sweat, feeling faint issues that we thought was my blood pressure, has actually been the sugar. A+E said that it’s probably been happening for a long time and I’ve just not known because I hadn’t been testing.

 

[donnellysdogs]

I was just thinking about bringing up after exercise and not down. If I go low at night jyst putting my feet to the floor will raise my levels..and exercise, just walking can as well...as that actually gets motility in me working better.

But with levels going that low you cannot afford to try this.

I think you need to request to have a MDT team sorted
urgently.

Lots of gastro people in Scotland, your areas on FB Gift uk.. gastro intestinal failure trust ... I would also be asking for their advice as well...

 

[HarleyRH]

Thank you I’ll have a look at all of this, lots of new language to me though (no idea what an MDT team is but I shall google!)

Thank you again

 

[donnellysdogs]

Multi disciplenary team meeting.

You need all the consultants to agree a way forward.. not just one.. if it needs a referral to an endochronologist for advice on how to keep you bloods up and steady to finction then you have the right to ask for Mdt meeting and if refused, ask them directly.. " if my bkoods are showing at Lo or0.9 can you guarantee I will recover and not leaving my children missing a parent"...

(Dont take this as alarmining or worrying to yourself) but you need to put it strongly sometimes to get them to act...

and ask for a copyof letters to be sent to you, as well as the GP.
Again you are entitled to this.

 

[Lamont D]

Hey guys, thank you so much for the replies, I will try to explain more.

The 0.9 and “lo”s have only happened a couple of times (that I’ve caught!) to be fair it came back up to the 3s within half an hour but at that point I had been drinking a lot of monster glucose drinks to try and bring it back up (before I’d been told it was reactive).

For my 500 it’s usually beetroot salad, something bready ,soup and/or very low fat ice cream.

I can eat well cooked vegetables like mushrooms and peppers but have a problem tolerating heavy veg like potatoes. I can generally only eat things that are very low fat and in really small quantities.

@donnellysdogs Yes, it can be pushed at different speeds but my max is about 100ml an hour.

Electrolytes have been checked and as far as I’m aware, the last time it was just urea that was low. I had bloods done last week but it was in hospital so no one told me the results

Oh and exercise (like brisk walking if I can manage it) brings it up, not down

The starchy vegetables are so similar to what triggers the RH!
Potatoes are really bad for me.
Of course, your conditions have to be managed to be healthy for you.
You definitely need to start experimenting like I did, finding out which foods you can tolerate, and obviously foods that you can tolerate for your other conditions.
You need to test, test, test and record everything. Do it systematically in a food diary.
This will help you find the baddies and what you put in your diary will help convince your health practitioners, that something serious is going on and you need urgent help.
I have a great endocrinologist who steered me through my battle to get diagnosed.
You have to be tough and insistent on your health care, find out your results and what they plan in the future.

@donnellysdogs, I would not recommend not using glucose in an emergency or for treatment but having RH, with other conditions, it just doesn't make sense if not an emergency! That is why we have extended OGTT for diagnosis purposes. Because the doctors know what will definitely happen to someone with RH!
It will make the patient really ill.
That is why it is done in hospital under close supervision.
Because it could trigger an insulin response which could in extreme cases cause coma.
My endocrinologist advised me to have a medical alert card in my wallet so that if I was found unconscious instead of glucose or glucagon injection.
A weak solution of sugared water is advised.
I can only go on my experience and my conversations with my endocrinologist.

Best wishes

 

[donnellysdogs]

Aaah, I was only thinking anout 0.9 and Lo reading for the glucogel to rub in gums.. thinking it is easier for it to be applied when someone is deeply drowsky.. not if anle to swallow... and not squirted down throat. Literally in an emergency and rubbing it in to gum only.
Sorry if that is ill advised.

I have really emphasised getting urgent appt with soecialists but understand how difficult it is. I would ceratainly recommend going back to consultants secretary or speak to GP and ask to be put on list as urgent..

 

[donnellysdogs]

I did think about the water/sugary solution but aware that it depends upon the depth of someone being able to help themselves and that it waant given if unable to swallow...

 

[Lamont D]

I did think about the water/sugary solution but aware that it depends upon the depth of someone being able to help themselves and that it waant given if unable to swallow...

I have often thought about how to treat a serious hypo, I have got my remedy, but what do you tell or advise someone who doesn't realize the consequences.
When I used to go hypo, a biscuit would just about nudge me up back into normal levels without spiking me, then a very low carb meal fifteen minutes after to normalize my bloods.
But I don't have a problem if it is an emergency, because the person responding would treat first.
I have also discussed this at work with first aiders and at my local club, they are aware of the condition now, and I'm confident they would help in such a way not to use normal procedures for a hypo, but of course it depends on how bad it was.

I'm hoping it never happens.

RH is best treated by diet. Keeping glucose levels in and around normal levels. Not going high enough to trigger the need for the excess insulin in response to a meal which has too many carbs depending on the intolerance to those foods.
If a patient with RH, does this, the symptoms lessen and their health improves dramatically.
It is unfortunately a condition with no cure, but can be controlled and managed well, if you are resolute and eating sensibly.
The success of my control, is down to the many posters with great advice and my battle with my doctors, also my determination to acquire knowledge and understanding of how and why this condition happens.

Best wishes.

 

[Australia 1]

@HarleyRH Ever since I have been in touch with you about your background and your family, because My Son Called me from America last night and told me that His Third Child is on the way, I thought of you and everyone I know that can even relate to us. And it is Ironic that I had my first major hypo last night which is sunrise in London England. It was not that low, at 3.2 because I went by what you call low. So I have your identical illness in my family and I have dedicated myself to understand this illness until I am sure I know it before I get into our insulin problems. I will be doing short IM,s as I thought in your case as with me with 2 Cancers and related problems with Hypo issues we have to be Spot-on serious about our Health. I take Prayer very seriously and that will be an IM talk.
Brother Sam.