Sugars dropping repeatedly-help

Discovery22

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Overall I’m used to controlling my sugar levels but I keep getting days where my blood glucose constantly drops throughout the day and it’s impossible. I’m careful not to miss meals...even if I don’t feel like eating I do yet within an hour my levels plummet. I had soup for lunch, an hour later I felt wield and although my levels were 6.8 I knew they were dropping. In less than an hour it was 3.6. It was constantly dropping and so had 3 glucose tablets which normally deals with it but no....it went up to 5.4 then immediately started dropping again and half an hour after having the glucose I was back down to 4.1. And then tomorrow it’ll probably be ok for a couple of days.ive had this for years and coped but the last few weeks have been unbearable and 3 times I have passed out. Recent blood tests have showed that my kidneys are struggling, with high creatinine levels and low GFR. I’m due to see an endocrinologist at the end of the month but I can’t keep going like this
 

kitedoc

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Ni @Discovery22,
Can you tell us what medication you are taking and when and how much,
plus what your meals /carbs per meal are and when?
These facts will help us to give you some ideas.
Also I would suggest you really need to be in touch with your DSN pronto!!
 
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Discovery22

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Hi, I’m not on any medication for my blood sugars and haven’t seen anybody about Rh. I was finally diagnosed in October after coping with it for years. Every time I went to see my gp he said it’s impossible to suffer with low blood sugar unless you take insulin. I went back to my gp the other day and told him I’m really having trouble with it now and he recommended to keep my sugar levels on the high side!!!! He really doesn’t get it. I avoid sugar like the plague in general as it’s guarenteed to make me crash. I eat carbs in moderation and if I’m having a bad sugar day my levels will continuously drop until I eat a meal with carbs then it will stabilise. I eat lots of protein including having boiled eggs for breakfast with either brown bread or crackers. Unfortunately I have to avoid nuts and seeds and too much fibre as I also have diverticular disease. Most days I can control things and know what I can and can’t do to keep it stable but then I have these days where it just drops throughout the day. Normally it would take around an hour and a half for me to crash after going high (as it did with my extended GTT) but on these days it drops when it hasn’t even gone high...within half an hour. They are also querying if I have a tumour at the moment and I’m wondering if that could be complicating things
 

Brunneria

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Hi @Discovery22

Sorry you are going through this.
Multiple hypos every day makes you feel helpless and very, very emotional.
Not having a good way to combat them makes everything feel much worse.

All I can do is tell you about my experiences. I have never been investigated for a tumour, and am confident that I don't have one. So if you have one, then what I am about to say is not relevent.

But if you have RH from overproduction of insulin in response to carbs, driving you into a hypo some time after eating, then what I am about to say may be very relevant indeed.

FOR ME the amount of brown bread and crackers you are eating would GUARANTEE that I had hypos. And then every time I reached for carbs to deal with the hypo, I would be GUARANTEEING another hypo a few hours later.

FOR ME the only way I was able to get off the hypo rollercoaster was to STOP eating the carbs that caused it.

And really, it is a very simple solution.
I took all the bread, rice, pasta, crackers, noodles, sweets, choc, sweet fruit, carby yogurts, desserts, sweet drinks and root vegetables out completely.
Then I replaced them with more non-starchy veg, kept the protein the same, and added in butter, coconut oil, and other healthy fats to replace the calories from the carbs.

I heartily recommend that you try this. Just for one day.
Start with a good breakfast of scrambled eggs and very low carb sausages or bacon. With butter on the eggs. No bread.
Then see how you go all morning.
If you have a wobble, then some cheese will sort that out.
Lunch of salad with lots of mayo and a protein source. I like chicken or tinned oily fish.
Same snack in the afternoon, if you want it.
Then a good dinner of meat or fish, with veg, and cheese or butter on the veg.

All very simple, and the only carbs are the ones in the green veggies.

Make sure you eat plenty. Forget about calories. Forget about the horrors of fat stabbing you in the heart. You are only doing this for one day as an experiment.

If your RH works like mine, you will have a comfortable day, no hypos. no wobbles. no worries.
If it works like that for you, then you have effectively dropped off the hypo rollercoaster, and you can think about finding a way to incorporate this way of eating into a regime that works for you.
 
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Seems like possibly some kind of glucagon dysfunction not regulating gluconeogenesis effectively. You should not get hypoglycaemia even if you never eat. Maybe your pancreas isn’t secreting enough glucagon, or your liver is resistant to it. Only your endo will be qualified to investigate that.

Edit: sorry, I’ve just seen you have been diagnosed RH? Not sure if there’s a glucagon relationship but I suspect so.
 

Discovery22

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Messages
51
Hi @Discovery22

Sorry you are going through this.
Multiple hypos every day makes you feel helpless and very, very emotional.
Not having a good way to combat them makes everything feel much worse.

All I can do is tell you about my experiences. I have never been investigated for a tumour, and am confident that I don't have one. So if you have one, then what I am about to say is not relevent.

But if you have RH from overproduction of insulin in response to carbs, driving you into a hypo some time after eating, then what I am about to say may be very relevant indeed.

FOR ME the amount of brown bread and crackers you are eating would GUARANTEE that I had hypos. And then every time I reached for carbs to deal with the hypo, I would be GUARANTEEING another hypo a few hours later.

FOR ME the only way I was able to get off the hypo rollercoaster was to STOP eating the carbs that caused it.

And really, it is a very simple solution.
I took all the bread, rice, pasta, crackers, noodles, sweets, choc, sweet fruit, carby yogurts, desserts, sweet drinks and root vegetables out completely.
Then I replaced them with more non-starchy veg, kept the protein the same, and added in butter, coconut oil, and other healthy fats to replace the calories from the carbs.

I heartily recommend that you try this. Just for one day.
Start with a good breakfast of scrambled eggs and very low carb sausages or bacon. With butter on the eggs. No bread.
Then see how you go all morning.
If you have a wobble, then some cheese will sort that out.
Lunch of salad with lots of mayo and a protein source. I like chicken or tinned oily fish.
Same snack in the afternoon, if you want it.
Then a good dinner of meat or fish, with veg, and cheese or butter on the veg.

All very simple, and the only carbs are the ones in the green veggies.

Make sure you eat plenty. Forget about calories. Forget about the horrors of fat stabbing you in the heart. You are only doing this for one day as an experiment.

If your RH works like mine, you will have a comfortable day, no hypos. no wobbles. no worries.
If it works like that for you, then you have effectively dropped off the hypo rollercoaster, and you can think about finding a way to incorporate this way of eating into a regime that works for you.

Thanks for taking the time to reply. When I first joined the forum I read that people had omitted carbs so I tried it but my sugars dropped repeatedly and I ended up having to have something before I went to bed as I was worried I would go in my sleep. When I’m struggling bad with it, it would drop all day long until I have my evening meal (with carbs) then it would stop. I think there must be something going on as even if I fast completely it will drop
 

Discovery22

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51
Seems like possibly some kind of glucagon dysfunction not regulating gluconeogenesis effectively. You should not get hypoglycaemia even if you never eat. Maybe your pancreas isn’t secreting enough glucagon, or your liver is resistant to it. Only your endo will be qualified to investigate that.

Edit: sorry, I’ve just seen you have been diagnosed RH? Not sure if there’s a glucagon relationship but I suspect so.

Hi, you may be right. I had to have a procedure done a couple of weeks ago and wasn’t sure if I was allowed to eat so I didn’t. They ended up aborting because I went hypo from not eating so I was there the whole time and all they did was feed me biscuits and tea so I could get home. It’s much worse than it used to be
 

Discovery22

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Messages
51
Seems like possibly some kind of glucagon dysfunction not regulating gluconeogenesis effectively. You should not get hypoglycaemia even if you never eat. Maybe your pancreas isn’t secreting enough glucagon, or your liver is resistant to it. Only your endo will be qualified to investigate that.

Edit: sorry, I’ve just seen you have been diagnosed RH? Not sure if there’s a glucagon relationship but I suspect so.

Having said this, I’m definitely reactive though as if I eat something that makes my sugars high I’m guaranteed to crash about an hour and a half after
 

kitedoc

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With the degree of trouble you are experiencing @Discovery22, I think you need to ring your doctor, specialist preferably, and explain that you do not have any quality of life or safety in your present condition and ask for help.
You cannot be expected to wait. With recurrent hypos diabetics may need admission and investigation, why should you suffer so much and expect to put up with it when you have tried your best to combat the problem??
Best Wishes. :):):)
 
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Discovery22

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You're right that's why I asked my gp about it but he just told me to eat sugar all the time to keep the levels high. I'm not doing that as ill be dropping left right and center. I've already passed out 3 times, luckily after treating it so it has come back up again but it leaves me feeling cold and tired and washed out. I'm due to see an endocrinologist on the 15th for the possibility of a pheochromacytoma tumour. He ordered the GTT so I will be asking him to refer me at least to a clinic. I can't even drive at the mo as it drops so quickly and I refuse to put others at risk
 

Brunneria

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You're right that's why I asked my gp about it but he just told me to eat sugar all the time to keep the levels high. I'm not doing that as ill be dropping left right and center. I've already passed out 3 times, luckily after treating it so it has come back up again but it leaves me feeling cold and tired and washed out. I'm due to see an endocrinologist on the 15th for the possibility of a pheochromacytoma tumour. He ordered the GTT so I will be asking him to refer me at least to a clinic. I can't even drive at the mo as it drops so quickly and I refuse to put others at risk

Good move about the driving.
Have you informed the DVLA?
Apparently we are supposed to.
If you go to their website, you can find a list of all the conditions that they need to be informed about, and hypoglycaemia is on there.
Fortunately there is a form to fill in online, so it is easy to let them know your circumstances.

Never heard of a pheochromacytoma tumour before - so will be off to google it in a moment.

One thing that constantly amazes me is the variety of health conditions that lead to hypos, and the umbrella term 'RH'.
Only two things are certain; finding out what the cause of each person's RH is a long and unique slog.
And most of the time doctors fall back on the 'eat more carbs to keep your bg up' advice.

Interestingly, as @Jim Lahey says, glucagon issues seem to play a part for some. But so do adrenalin and cortisol, for some, with a host of different adrenal hormones in the mix.
The nearest I can deduce for my version of RH, I seem to only have RH for a couple of weeks after eating gluten. Even a tiny amount of it will do it. And my insulin and glucagon (or a combo of both) seem to go wangy. Food intolerance affecting pancreas' hormone production? Your guess is as good as mine. Fortunately I am able to control it for months at a time with a gluten free ketogenic way of eating. Then I accidentally get glutened again, and Wham!

Edited to add: just googled pheochromacytoma, and it is a tumour of the adrenals.
 
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Discovery22

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Yes. It affects the adrenals but it can in fact be hidden anywhere in the body and its like finding a needle in a haystack. They are made of hormone cells and cause big problems. Apart from the rh my BP spikes from being low to stupidly high in minutes. 180/140 being high. I'm getting heart rate spikes too with that sometimes reaching 130's then dropping to the 40's.im a complicated case and spend most of my time feeling unwell from at least one of these most of the time. If Im struggling with my BP and my rh at the same time it's just awful. I spend all day every day drinking water too as my thirst never goes away... Even after 7 litres a day but that probably dilutes my bg too then get pain in my kidneys and wee blood. I need this to end. I'm done
 

kitedoc

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Please contact the endocrinologist if you believe your GP is not helping.
The thirst is also a worry and ? related to the other trouble..
Blood pressure is far too high.. That is urgently in need of sorting.
Please do not delay. You are sounding exhausted.
If you cannot get through, ring for an ambulance.
 
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Discovery22

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Please contact the endocrinologist if you believe your GP is not helping.
The thirst is also a worry and ? related to the other trouble..
Blood pressure is far too high.. That is urgently in need of sorting.
Please do not delay. You are sounding exhausted.
If you cannot get through, ring for an ambulance.

Thank you kitedoc and everybody else. Your support means a lot
 
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Discovery22

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I’ll see what they say on the 15th. They won’t bring the appointment forward as I had trouble getting that one. Just hope it doesn’t finish me off before then
 

kitedoc

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Thank you kitedoc and everybody else. Your support means a lot
Thank you but please, as difficult as it may be, phone the ambulance, perhaps mention BP s up to 180/140, persistent uncontrollable hypos, and an endo is involved but these readings are too much. If you have a headache mention that also.
Get the help you need or ask a friend to help you with getting help.
 
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kitedoc

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I’ll see what they say on the 15th. They won’t bring the appointment forward as I had trouble getting that one. Just hope it doesn’t finish me off before then
That is too far away. Please GET HELP NOW. This is not the time to be fatalistic.
 

Discovery22

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But they won't bring the appointment t forward. They said they need time to collate the information as I've he'd so many tests and have so many symptoms which may or may not be related. I've been to A & E a few times with the BP, headache, nosebleed and chest pain but they say because of my issues all they can do is check I'm not having a heart attack and send me home as my BP then drops back down to norml or low. The worst thing for me to do is walk upstairs as its guaranteed to put my BP up for some reason. My rh has got so much worse than it was too but I just get told maybe I need a glucose injection handy but then I can't see the specialist to ask them so I don't know. This problem with my kidneys is also new and I'm aware that can be caused by unstable BP likewise kidney disease can cause unstable BP. It's worrying since my dad died of a heart attack from high BP when he was a year younger than I am now. I was just 15.ive been pulling my hair out trying to be seen, even my CPN sent the consultant a letter to which he phoned him to say I've had so many tests they need time to put it all together. It's very distressing