I,m new here but just come out of hospital for 48 hour fasting nightmare doctors shocked!

[Shaky-kate]

Hi, I,m kate,
Cut a very long story short, been having low hypos since 1991, nhs states no diabetes and has never understood what's going on. The last few years have been a nightmare. I love hiking and running and can no longer a thing as my legs just will not work and the hypos are many when they turn up.

If i don't eat a thing I feel ok. after I eat i start feeling like ****, end up with no energy or sleep. or will bring on hypos. When i used to walk my bloods are in the low 4s within minutes.

Monday 20th at 8 am i was admitted to Ninewells hospital in Dundee where the nightmare began, even the nurses were stunned. had to fast from midnight. came out 22nd at 11 am.

1st sugar test 5.6 ok.
6 hours later 4.7
6 hours later 4.4 in my danger range for hypos but nothing happens
by now i,m in extreme pain with sickness and headache so bad i still can't remember monday apart from the numbers
3.7 no hyops yet, then it happened, next 4.8 then they started to check it ever 3 hours, down to 3.4 no hypos and by now i should have been in a right mess but soon after a slight hypo started, sweating like crazy then it stopped. checked again 4.6 now doctors are called in, lost for words. they checked my ketones, 9.7 off the sales. Doctor laughs and said what's going on inside your body is crazy never seen this before. By now i'm out of it on painkillers but they tried to lower the ketones with fluid drips, it worked only slightly down to 3.9 still too high

bloods went down to 3.4, no hypos but trembling badly and almost passing out due to very low blood pressure, after the 3.4 it went back to 4.8 then 3 hours later 3.7 then 3.4 and that was the last sample.

Not a single doctor or nurse has seen this before.

It was then time to have some food, 2 rounds of toast with jam. bloods went from 3.4 to 13.6 to 9.8 within 10 minutes of eating leaving me so jumpy and jittery. I have to wait for the results but would be interested to find out if anyone else is having these issues?

My life is finished no longer walking, houses bound due to legs keep failing, doctor said i,ve had so many hypos its damaged the nerves.

I did try the keto diet meet free version last summer, it was the first time i had no hypos but it caused no energy going to my legs so had to eat some carbs which made everything come back.

Kate.

 

[Melgar]

Hello @Shaky-kate , and welcome to the forum. I am so sorry to hear you are going through all of this. It sounds awful. I’m going to tag @Lamont D . He is very knowledgeable on Reactive Hypoglycemia having battled for a diagnosis.

 

[Shaky-kate]

Hello @Shaky-kate , and welcome to the forum. I am so sorry to hear you are going through all of this. It sounds awful. I’m going to tag @Lamont D . He is very knowledgeable on Reactive Hypoglycemia having battled for a diagnosis.

Hi, Thanks,

I needed to come here after that madness in the hospital. Don't know if I mentioned, I get hyos at 4.3 when things are every bad.I am convinced its a food problem, mostly around carbs, thing is there's little food out there that's ok for my lifestyle.

I could do a post on how i managed to stop the hypos for 4 months but wasn't able to manage the food intake.

Kate.

 

[Antje77]

I did try the keto diet meet free version last summer, it was the first time i had no hypos but it caused no energy going to my legs so had to eat some carbs which made everything come back.

Did you eat enough, calorie wise when you did the keto diet?
Keto and vegetarian is more difficult than keto or low carb as an omnivore.

 

[Shaky-kate]

Did you eat enough, calorie wise when you did the keto diet?
Keto and vegetarian is more difficult than keto or low carb as an omnivore.

I was finding not eating was working, fasting from 5 pm, no breakfast, no energy drops and was able to live my normal life which was long distance hiking and running. i then moved into a dinner, salad with salmon and fish proteins but the low carbs started to show when climbing hills, no power. did some research in to carbs that don't spike sugar levels, like wholemeal so started on that's, they problems started to come back which shows itself with sudden loss for power in the legs.

I found that diet hard to do tbh buying the right foods become a nightmare with shops not stocking the foods, started to drop foods out due to bloating in gut. I then thought i,m in deep trouble here.

Doctor said buy some glouce tablets like lift and these dextrous drinks. They work but for a very short time, they ment to max out the sugar levels yet those tablets and drink was only putting my ugar levels to low 5s then back down again soon after. would have hypo after hypo when walking, no matter what food i was having.

All i know it starts from the base of my ribs in a 4 inch patch, like a tingling feeling that flies down my legs and up in a matter of seconds, followed by a hypo, sweating and brain fog from hell, takes around 6-10 hours to recover.

Going back to not eating at all. when ketosis is there, no hypos even down to 3.4 like in hospital, throw food in the mix and things slowly start to go wrong.

 

[Lamont D]

Hi @Shaky-kate and welcome to our forum.
Have you had any tests yet?
Has your hba1c levels been discussed?

Ok you do have the symptoms of RH, but , until you have the necessary tests, starting with a full blood panel test, the mixed meal or extended oral glucose tolerance test. Then a fasting test, could you be diagnosed with RH. Because other hypoglycaemic conditions exist as well as pancreatic conditions, such as insulinoma. They have similar symptoms and cause hypoglycaemia.

You have already done keto, and it stopped the hypos, the clue is there. But you can't keep doing it. As you say restrictive, depending on your own tastes etc.
I just mainly eat different meats and salad varieties of veg, eggs, every which way.
But you can if you know which carbs don't trigger the symptoms, have a few carbs, if you can control your BG levels in or around normal levels, (between 5-8mmols) the symptoms should reduce.

In my experience, I believe that since you are getting multiple hypos every day, your intolerance levels are much more less resilient to the carbs you have, and the insulin resistance has built up, meaning that probably you have too much insulin in your blood, hence the severe hypos, experiencing them at higher than usual hypo levels. Excess insulin is not good. And the continuous over producing of insulin, just doesn't help.
For now, the crazy part is justified, if I is RH.
I was called weird by more than two doctors, and when I asked my endocrinologist, he confirmed it. All in good fun. But the majority of the population, it cannot happen to them.

Have they give you appointments for tests of to see a specialist endocrinologist. Because you need to be referred to one, cos only endos can sanction the diagnostic tests.

If it is RH, fasting is very good for giving your body a rest from the symptoms.
I did eighty hours in hospital and felt great afterwards.

What dietary recommendations have you had?

Are you on any meds?
Has anyone suggested An intolerance to either wheat or gluten or dairy?

Let us know how you get on.
Best wishes
Keep asking.
Understanding what and why it is happening is important.

 

[Antje77]

fasting from 5 pm, no breakfast, no energy drops and was able to live my normal life which was long distance hiking and running. i then moved into a dinner, salad with salmon and fish proteins but the low carbs started to show when climbing hills, no power.

Long distance hiking and running on very low carbs and little fats looks like low calorie to me, unless you ate massive amounts of salmon. If you were low calorie (and don't forget that doing long distance hiking and running you'd need a lot more calories than the average couch potato doing some aquarobics twice a week) I'm not surprised at all that you had no power in your legs.

I found that diet hard to do tbh buying the right foods become a nightmare with shops not stocking the foods

What foods were you looking for? Meats, butter, bacon, eggs, cheeses, veggies, cream, nuts, my supermarket may sometimes be out of the specific sausage or pork chop I planned but there's never nothing of those types of foods where I live.

Doctor said buy some glouce tablets like lift and these dextrous drinks. They work but for a very short time, they ment to max out the sugar levels yet those tablets and drink was only putting my ugar levels to low 5s then back down again soon after. would have hypo after hypo when walking, no matter what food i was having.

If it's reactive hypoglycaemia, your reaction to the glucose tabs makes perfect sense. The 'reactive' in RH simply means you have a hypo reaction to carbs because your pancreas overshoots the insulin in reaction to a steep rise in BG.

 

[Lamont D]

Long distance hiking and running on very low carbs and little fats looks like low calorie to me, unless you ate massive amounts of salmon. If you were low calorie (and don't forget that doing long distance hiking and running you'd need a lot more calories than the average couch potato doing some aquarobics twice a week) I'm not surprised at all that you had no power in your legs.

What foods were you looking for? Meats, butter, bacon, eggs, cheeses, veggies, cream, nuts, my supermarket may sometimes be out of the specific sausage or pork chop I planned but there's never nothing of those types of foods where I live.

If it's reactive hypoglycaemia, your reaction to the glucose tabs makes perfect sense. The 'reactive' in RH simply means you have a hypo reaction to carbs because your pancreas overshoots the insulin in reaction to a steep rise in BG.

Thanks @Antje77.
I did notice that the many, many threads I have posted in has had an effect on someone. Ha.

 

[Shaky-kate]

Long distance hiking and running on very low carbs and little fats looks like low calorie to me, unless you ate massive amounts of salmon. If you were low calorie (and don't forget that doing long distance hiking and running you'd need a lot more calories than the average couch potato doing some aquarobics twice a week) I'm not surprised at all that you had no power in your legs.

What foods were you looking for? Meats, butter, bacon, eggs, cheeses, veggies, cream, nuts, my supermarket may sometimes be out of the specific sausage or pork chop I planned but there's never nothing of those types of foods where I live.

If it's reactive hypoglycaemia, your reaction to the glucose tabs makes perfect sense. The 'reactive' in RH simply means you have a hypo reaction to carbs because your pancreas overshoots the insulin in reaction to a steep rise in BG.

Its funny tbh, me and food, omg, lost in a world of what to eat so on.

What foods do i eat, not much now until the doctors come up with an idea. i,m not a vegy, i do eat fish, about 90 grams of protein, i find eating that amount hard work tbh. Most of my food is salads, that doesn't upset things. when it comes to carbs, that's a major problem.

The diet was
high amount of nuts, almonds, almond milk, snakes would be nuts, oats, flax seeds, with side salad, high vegs dinners, 2 main meals, lots of protein yogurts, but still not enough to power what i was doing so those **** carbs.even with those whole grain pastas, breads bloating from hell.

Yes its healthy and did control the hypos better, it left me without any power, can't win.

Because of all the problems, i can't stand food anywhere.

 

[Antje77]

Do you eat meats or only fish?
I already know you don't like cheese so we'll skip that easy source of fats and calories.
But what about butter and cream? Almost all veggies taste a lot better prepared with butter and cream, and it will easily up the calories. I have no experience with high protein yoghurt but I love cheap Greek style yoghurt with 10% fat.

those whole grain pastas, breads bloating from hell.

Have you been tested for celiac?

 

[Shaky-kate]

Hi @Shaky-kate and welcome to our forum.
Have you had any tests yet?
Has your hba1c levels been discussed?

Ok you do have the symptoms of RH, but , until you have the necessary tests, starting with a full blood panel test, the mixed meal or extended oral glucose tolerance test. Then a fasting test, could you be diagnosed with RH. Because other hypoglycaemic conditions exist as well as pancreatic conditions, such as insulinoma. They have similar symptoms and cause hypoglycaemia.

You have already done keto, and it stopped the hypos, the clue is there. But you can't keep doing it. As you say restrictive, depending on your own tastes etc.
I just mainly eat different meats and salad varieties of veg, eggs, every which way.
But you can if you know which carbs don't trigger the symptoms, have a few carbs, if you can control your BG levels in or around normal levels, (between 5-8mmols) the symptoms should reduce.

In my experience, I believe that since you are getting multiple hypos every day, your intolerance levels are much more less resilient to the carbs you have, and the insulin resistance has built up, meaning that probably you have too much insulin in your blood, hence the severe hypos, experiencing them at higher than usual hypo levels. Excess insulin is not good. And the continuous over producing of insulin, just doesn't help.
For now, the crazy part is justified, if I is RH.
I was called weird by more than two doctors, and when I asked my endocrinologist, he confirmed it. All in good fun. But the majority of the population, it cannot happen to them.

Have they give you appointments for tests of to see a specialist endocrinologist. Because you need to be referred to one, cos only endos can sanction the diagnostic tests.

If it is RH, fasting is very good for giving your body a rest from the symptoms.
I did eighty hours in hospital and felt great afterwards.

What dietary recommendations have you had?

Are you on any meds?
Has anyone suggested An intolerance to either wheat or gluten or dairy?

Let us know how you get on.
Best wishes
Keep asking.
Understanding what and why it is happening is important.

Hi, sorry didn't see this post.

hba1c coming back normal

Just come back from hospital today, why I came here. what a mess that was. 48 hour test. body was going crazy with blood sugar levels, started ok at 5.6 then down, then up, down up. light hypos but stopping fast.doctors had no idea, then tested my ketones, 9.8 or 9.9 too high to run tests, got it down to 3.8 still body refusing to go into hypos when it should have been. One doctor and the team doing i said they have never seen that before.

I don't eat meat which is a pain tbh, there was noway i could do that diet and do what i was doing, yes i lost over a stone of weight but suffered low power levels.

Oddly you mention bloods 5-8, ok this is what happened this morning in the hospital, after they finished the fasting they gave me brown bread toast, jam and orange drink. i said to the nurse this may show you what happens. as my bloods where at 3.4 within 10 minutes 13.8 and 9.2 i think. i went jittery as hell, made the nurses laugh as i went hyper for a moment.

I've noticed when i,m eating, even salads it goes to 9-10 to 11 and remains like it for hours but thats very rare, when i,m in full hypo, when they come and go without warning, i can eat and within minutes or a few hours have another hypo.

Doctors have been struggling with food with me, i live in scotland so getting some food is hard work, very basic stuff. it was mostly down to my crazy lifestyle.

I,m not sure what the doctors are doing, yes it was a endocrinologist they were at a loss due to the random sugar levels. have to wait 7 days for results for my gp. i was getting fed up with me not going full hypo even at 3.4 which is normally very bad for me.

The only problem with the fasting tests, they didn't really push me to bring on a hypo, i said try making me walk or something but i was very ill with headaches. unreal pains in my stomach and not hunger pains either, by 3rd day, like you no food and i felt ok, appart from my blood persure kept going too low.

 

[Shaky-kate]

Do you eat meats or only fish?
I already know you don't like cheese so we'll skip that easy source of fats and calories.
But what about butter and cream? Almost all veggies taste a lot better prepared with butter and cream, and it will easily up the calories. I have no experience with high protein yoghurt but I love cheap Greek style yoghurt with 10% fat.

Have you been tested for celiac?

Yes have fish, butters, cod liver oil, olive oil,

celiac, well theres an on going issue here, doctor has been trying to force the hospital in seeing me for a herniated bowel which happened before christmas. when i was in hospital yesterday the doctor said we need a scan on your tummy due to the main artery its just above your belly button, if you press you may feel it, well mine is pressing on my nerves in my back. some people have the main archery in the wrong place but the **** hospital refused the scan.

Ohh i tried avocados when starting that diet, omg, rather have hypos then eat those things lol

 

[Lamont D]

Hi, sorry didn't see this post.

hba1c coming back normal

Just come back from hospital today, why I came here. what a mess that was. 48 hour test. body was going crazy with blood sugar levels, started ok at 5.6 then down, then up, down up. light hypos but stopping fast.doctors had no idea, then tested my ketones, 9.8 or 9.9 too high to run tests, got it down to 3.8 still body refusing to go into hypos when it should have been. One doctor and the team doing i said they have never seen that before.

I don't eat meat which is a pain tbh, there was noway i could do that diet and do what i was doing, yes i lost over a stone of weight but suffered low power levels.

Oddly you mention bloods 5-8, ok this is what happened this morning in the hospital, after they finished the fasting they gave me brown bread toast, jam and orange drink. i said to the nurse this may show you what happens. as my bloods where at 3.4 within 10 minutes 13.8 and 9.2 i think. i went jittery as hell, made the nurses laugh as i went hyper for a moment.

I've noticed when i,m eating, even salads it goes to 9-10 to 11 and remains like it for hours but thats very rare, when i,m in full hypo, when they come and go without warning, i can eat and within minutes or a few hours have another hypo.

Doctors have been struggling with food with me, i live in scotland so getting some food is hard work, very basic stuff. it was mostly down to my crazy lifestyle.

I,m not sure what the doctors are doing, yes it was a endocrinologist they were at a loss due to the random sugar levels. have to wait 7 days for results for my gp. i was getting fed up with me not going full hypo even at 3.4 which is normally very bad for me.

The only problem with the fasting tests, they didn't really push me to bring on a hypo, i said try making me walk or something but i was very ill with headaches. unreal pains in my stomach and not hunger pains either, by 3rd day, like you no food and i felt ok, appart from my blood persure kept going too low.

I may be wrong but I think the fasting test shows that fasting can help you. My first day was a bit of a pain, I was uncomfortable until the second morning and kept on improving into the fourth morning. But my BG levels were always in normal levels.
And as always a but, the BP reading.
There is a complicated symptoms list with the readings and hypo, hyper symptoms.
And of course the battle with food and what to eat.
I'm in England and I have found a butcher and a fresh food outlet, so I have my meat and salad veg, plus eggs and other recommended foods.
But the final advice is always testing for yourself a food diary, then getting good control of your BG levels.
Being in or around normal levels.
I do think that there is something else along with the symptoms of hypoglycaemia.
And I really believe that you may still have issues with the amount of symptoms, and this will sway the results of the testing and the fasting test you had.
For now, I would eat basic fresh food, very low carb and use fasting as in not eating in the morning, then not eating after 7pm. This will help keep your BG levels nearer normal more of the time.
In my experience, being in normal levels, is very good for me.
Don't forget, so called healthy foods, for everyone else, is definitely not for those with RH.
Keep asking, keep safe.
Best wishes.

 

[Shaky-kate]

I may be wrong but I think the fasting test shows that fasting can help you. My first day was a bit of a pain, I was uncomfortable until the second morning and kept on improving into the fourth morning. But my BG levels were always in normal levels.
And as always a but, the BP reading.
There is a complicated symptoms list with the readings and hypo, hyper symptoms.
And of course the battle with food and what to eat.
I'm in England and I have found a butcher and a fresh food outlet, so I have my meat and salad veg, plus eggs and other recommended foods.
But the final advice is always testing for yourself a food diary, then getting good control of your BG levels.
Being in or around normal levels.
I do think that there is something else along with the symptoms of hypoglycaemia.
And I really believe that you may still have issues with the amount of symptoms, and this will sway the results of the testing and the fasting test you had.
For now, I would eat basic fresh food, very low carb and use fasting as in not eating in the morning, then not eating after 7pm. This will help keep your BG levels nearer normal more of the time.
In my experience, being in normal levels, is very good for me.
Don't forget, so called healthy foods, for everyone else, is definitely not for those with RH.
Keep asking, keep safe.
Best wishes.

Hey how crazy is that.

For many years i could not cotton on, why i felt ok in the mornings, until i had food. then downhill from then on. it was a typo on youtube that lead me to the keto. looked into it and thought might as well give it a go and how add it was the same with me, felt like **** day one, no food from 7 pm, till 9 am, seond day bit better, went for a walk, no hypos but felt ****, 4th day, did my normal thing 7 miles but took a bunch of bananas out of scared out my brains of hypos along with sugary drink, did the 7 miles without no issues, thought ok. next day another 7, took a day off, 5 th day about 18 hours fasting feeling unreal, no brain fog. doing thing i hadn't done for years. 2 week later 10 mile hikes without issues, no pain in legs, no brain of after walking. took 2 months to get my weight down, lost 1.5 stones, back running but start to lose power, caught on its low glycogen which led to some major issues, the doctor said that keto diet isn't for what i,m doing. started the carbs up slowly and soon started to lose what i was doing, ending up with terrible leg and knee issues which in late november last year caused a femoral hernia.

You see what happens with me, something stops my quad muscle from working which stresses other areas, the doctor thinks its many years of hypos causing nerve damage so i need to be spot on to do anything.

what is funny is when i used to go shopping for my new diet, the shops had no food haha so ended up on one isle buying hardly anything yet it cost more.

Now i understand that even tho i need carbs, the carbs don't work as they should, leaving me up the creek with a paddle, boat, creek or even water lol.

Nuts seems to be my best friend, anything almonds

I made that big mistake after that hernia came out last november i ended up eating pizzas and chocolate.

I've been looking at a freestyle blood monitor, i think the nhs wont give me one as they only do that for type 1. it would be easier tfor food testing than pricking my fingers to death. in the mornings i find it very hard to get blood out of my fingers, i need a drill haha.