Urgent advice needed.

HelenBW

Member
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11
20 yrs ago I was diagnosed by a naturopath with reactive and fasting hypoglycaemia. I gave up sugar for a while, then found that I never got any "crashes" any more so long as I was careful -- by which I mean, I would no longer drink regular cola, or eat a bag of cherries on an empty stomach. I rarely have a hypo; maybe 3 or 4 times a year and a glass of orange puts it right.

However, yessterday I went into a massive crash after having a lunch of 2 bacon, 2 eggs, mushrooms and tomatoes followed by a bar of chocolate. (I do eat some chocolate pretty much daily, after a meal, and it never causes a crash.) About an hour later I started crashing really really bad, and I drank down a pint of fresh orange juice, which always does the trick. I felt better for 10 minutes then crashed again. Drank another pint and same thing happened.

I find the physical feeling horrible and unbearable: burning hot cheeks, headache, nausea, blurred vision, heart palpitations, adrenaline surging through my body, causing me to have a severe, uncontrollable trembling fit from head to toe. I also feel utterly panic stricken, and terrified.

Since then I have been crashing for 24 hours straight apart from the 5 hrs I was asleep overnight. I've been stuck in a crash for the past 8 hours and I can't bear it any longer. I feel lilke I am going out of my mind.

Today I have had: a pint of fresh orange juice, one 470mg potassium tablet with water, a cup of milk, a big glass of sugary cheery juice, another potassium tablet in water and 400g of sugary fruit yoghurt, all to try to get my blood sugar up again. I have really struggled to type this as I am shaking so wildly plus my vision is blurred.

Why is nothing working? I am scared out of my wits and at moments feel like I am going to faint. I can't stand another day or more like this, I can't function at all, just sitting here alone, shaking and crying all the time.

None of the doctors I have ever seen about this have ever even heard of non diabetic hypos, so I see no point in calling an ambulance or my GP. I feel really ALONE with this and like I have to find my cure myself on my own but I have no idea what to do because a glass of orange has always worked before and now even a MOUNTAIN of sugar isn't getting me out of it!

I assume my body is just gushing out insulin the whole time, and I don't know how to stop it.

I'm in such a pickle, please please can someone advise me how to get out of this nightmare?
 

NicoleC1971

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20 yrs ago I was diagnosed by a naturopath with reactive and fasting hypoglycaemia. I gave up sugar for a while, then found that I never got any "crashes" any more so long as I was careful -- by which I mean, I would no longer drink regular cola, or eat a bag of cherries on an empty stomach. I rarely have a hypo; maybe 3 or 4 times a year and a glass of orange puts it right.

However, yessterday I went into a massive crash after having a lunch of 2 bacon, 2 eggs, mushrooms and tomatoes followed by a bar of chocolate. (I do eat some chocolate pretty much daily, after a meal, and it never causes a crash.) About an hour later I started crashing really really bad, and I drank down a pint of fresh orange juice, which always does the trick. I felt better for 10 minutes then crashed again. Drank another pint and same thing happened.

I find the physical feeling horrible and unbearable: burning hot cheeks, headache, nausea, blurred vision, heart palpitations, adrenaline surging through my body, causing me to have a severe, uncontrollable trembling fit from head to toe. I also feel utterly panic stricken, and terrified.

Since then I have been crashing for 24 hours straight apart from the 5 hrs I was asleep overnight. I've been stuck in a crash for the past 8 hours and I can't bear it any longer. I feel lilke I am going out of my mind.

Today I have had: a pint of fresh orange juice, one 470mg potassium tablet with water, a cup of milk, a big glass of sugary cheery juice, another potassium tablet in water and 400g of sugary fruit yoghurt, all to try to get my blood sugar up again. I have really struggled to type this as I am shaking so wildly plus my vision is blurred.

Why is nothing working? I am scared out of my wits and at moments feel like I am going to faint. I can't stand another day or more like this, I can't function at all, just sitting here alone, shaking and crying all the time.

None of the doctors I have ever seen about this have ever even heard of non diabetic hypos, so I see no point in calling an ambulance or my GP. I feel really ALONE with this and like I have to find my cure myself on my own but I have no idea what to do because a glass of orange has always worked before and now even a MOUNTAIN of sugar isn't getting me out of it!

I assume my body is just gushing out insulin the whole time, and I don't know how to stop it.

I'm in such a pickle, please please can someone advise me how to get out of this nightmare?
Hi Helen, I am sure someone with RH will be along to offer some help.
Sounds as if you are on a roller coaster as you say so that you are eating sugar to cure the nasty low only to then have another crash.
Are you testing your blood sugars? As type 1 I know that I am still very confused by hypo feelings versus feelings of panic /adrenalin and have to test to be sure of what's happening. Not saying you are not going hypo but I would suggest you need a doctor's appointment very soon and they will find it useful to know what your sugars are (anything under 4 counts as hypo).
It is worth getting checked out because there may be other things happening and it would be worth checking why, if your pancreas is truly overreacting, this is happening as it is clearly very debilitating.
In the meantime try not to overtreat the low (small glass of juice and a biscuit) and let us know how you get on.
 

DCUKMod

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@HelenBW - Like @NicoleC1971 , I'm hoping you test your blood sugars, and might know what your reading was, or is, when all this was going on.

It certainly sounds like you are taking onboard a significant amount of carbohydrate, with the objective of bringing you bloods up, but if you usually go by your feeling ans symptoms, they can sometimes be a bit misleading, when working at the more extreme edges of the scale.

How are you feeling now? Have you sought professional help with this today?

If you are feeling unwell, and very concerned about your condition, then please do call 111 for professional advice. Better safe than sorry - always.
 

HelenBW

Member
Messages
11
Thank you both for replying.

I don't have a BS monitor because I only have hypos 3 or 4 times a year and they are soon put right with 500ml of juice.

I had one when a T1 friend was staying at my house and he gave me a blood test. It was 6.9 which he said is normal. We then had a bit of an argument about me using the term "hypo" when the monitor clearly showed I was not having one!

That incident put me off buying a blood sugar monitor. What would be the point of testing myself during a hypo just to get a "normal" reading? Please advise.


Today, once I could think straight, I came to realise that I was flooding my body with sugar out of sheer desperation to escape from the horrible, unbearable physical feelings, and was on a roller coaster because they were causing another hypo and so on. So now I have had two big slices of ham with a little bit of pickle and I will eat another couple in an hour or so then some cheese. No way I can face a proper meal as I feel nauseous.

I don't call 111 or my GP for a number of reasons, mainly because non diabetic hypoglycaemia does not fit into their cookie cutter mentality ... they only know about diabetes, my (our?) ailment is a mystery to them so they are of no help whatsoever, and secondly because there is absolutely nothing they can do: these crashes are for us to self-medicate by consuming the right things, sadly there is no medication or any other treatment that they can give us. I have (years ago) called a paramedic and was treated as a hysteric/mental case. I consulted 13 different doctors and specialists over 17 years about these hypos and not one of them realised it was a blood sugar issue -- I was treated as a psychiatric patient for all that time.

I would truly love to know why I went into a crash yesterday that has lasted now more than 24 hours. I didn't do or eat or drink anything different from any other day. It's a puzzle.

I'm still flooded with adrenaline, boiling hot head and ice cold body, still shaking though not as violently.
 

Brunneria

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As someone with a long history of RH, then I am going to try to strongly discourage you from treating an RH hypo with a pint of orange juice (with or without additional carbs)

If I did that I would be on exactly the high/low Rollercoaster you seem to be on.

My advice (from one RHer to another), is to sit down and eat a good, nutritious meal. Meat, fish or eggs, with a nice bit of butter, or meat fat, or mayo, and green veg. A roast dinner, or a cooked breakfast, or a huge low carb salad with coleslaw. No chocolate.
Those meals will digest slowly, drip feeding energy into your system and stopping the rollercoaster.

having said all that...the fact that you have suddenly started feeling this way, with no warning, suggests to me that something has changed with regards to your health, and I suggest that you seek medical attention for a proper investigation and diagnosis.

your symptoms need to be confirmed or eliminated as RH (and that means blood glucose testing when you are experiencing symptoms. A random blood test won’t show up a hypo). Then they need to find out why your symptoms have emerged like this, although my personal suspicion is that you have unintentionally set up the rollercoaster by over treating the hypo to start with.

Many of us here have learned by bitter experience, that things like brewing an infection, or lack of sleep, or stress, or unusual physical exertion may all upset our blood glucose regulation. Sometimes even just getting a bit older can mean we need to take a bit more care.

I hope you manage to get off the rollercoaster, and stay off it.
 
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HelenBW

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11
Thank you Brunneria

my personal suspicion is that you have unintentionally set up the rollercoaster by over treating the hypo to start with.... My advice (from one RHer to another), is to sit down and eat a good, nutritious meal.

I can see the sense in that -- I think I must suffer from acute impatience: I have to get out of the hypo ASAP, so I over-treat. I'm going to put some chicken drumsticks in the oven right now!

I suggest that you seek medical attention for a proper investigation and diagnosis.

I will do.

A random blood test won’t show up a hypo.


When my friend tested me I was in the middle of a hypo and it still showed 6.9 From the awful way I felt I expected 2 or 3.


brewing an infection, or lack of sleep, or stress, or unusual physical exertion may all upset our blood glucose regulation

So if I have contracted a cold virus, that could upset my BS?

I have been working like crazy for the last 3 days, getting up at 5am and working till midnight and getting 4 or 5 hrs sleep per night. Could that really have caused this massive hypo? Wow. That never occurred to me.

Thank you.
 

Brunneria

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A hypo (in your circumstances) would be a reading below 4mmol/l. Really, it wouldn’t be a serious hypo until it was significantly lower than that.

so if you had all the symptoms you describe at 6.9mmol/l then that ain’t a hypo.

What you may be experiencing is the knock on misery following a hypo. I have seen it ‘affectionately’ called a hypo hangover. Where you feel really rough, following the low blood glucose and the rapid dumpage of stress hormones (adrenalin, cortisol and so on) that your body used to get your bg back up.

Alternatively, if your body has got used to high bg over time (onset of pre-diabetes or type 2 diabetes), then you may be experiencing ‘false hypos’. These are when your usually high bg dips a bit and your body behaves as if it were a hypo, because it is so used to the higher levels. Only testing will eliminate that possibility.

regarding your recent work patterns... oh yes. That could cause it. And the first thing to fall by the wayside with a schedule like that, is regular, sensible, nutritious eating.

Good luck with getting it all sorted.
 

Antje77

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20 yrs ago I was diagnosed by a naturopath with reactive and fasting hypoglycaemia.
May I ask how the naturopath reached their diagnosis?
Can it be it's something else which makes you feel rubbish, and not low blood sugars?
 
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Lamont D

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Hi and welcome to our forum.
The first thing I would say is try and relax, the constant panic about the hypos will cause symptoms as well as the crash.
It is something every RH er goes through.
What they always tell you to treat a hypo with quick glucose, I spent twelve hours in a hospital after my glucose tolerance test because as perfectly you described that they couldn't believe that I was non diabetic going hypo and were treating it like a T1 or 2 diabetic.
What you are experiencing is called the rebound effect. Whatever is causing the trigger for your extra insulin (overshoot) you are treating the hypo, then it triggers more insulin, crash again, treat it, crash again and so on. Starting the day with concentrated fruit is going to put in the roller coaster ride of your blood glucose levels.
This yo yo effect is causing the symptoms. Your body even though it is demanding more sugar/carbs is trying to cope with out of control hormonal response to the food and drink you have.
RH is a dietary condition, when you have too much glucose then insulin after certain foods.

Take @Brunneria advice about eating a very low carb meal instead and you need to get a monitor, seek medical advice and ask for a referral to a specialist endocrinologist.

I have controlled my RH, since diagnosis, it is controllable if you know which foods to avoid.
If you have read the RH forum, I have an intolerance to most foods. I can only eat protein and saturated fats, vegetables and eggs.

I was before covid, as fit and healthy as a man of my age could be.

Keep safe. Keep asking, keep calm. I know what it is to have anxiety and not understand what is happening to you.

Best wishes
 
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HelenBW

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May I ask how the naturopath reached their diagnosis?
Can it be it's something else which makes you feel rubbish, and not low blood sugars?

Hi Anje

I can't quite recall but she made me lay on a couch and she did various muscle./allergy tests and asked loads of questions. It was a lifetime ago. But what I do remember was that I'd had a set of symptoms for 17 years by then and no doctor had ever suggested blood glucose problems.

No, my symptoms match exactly all the descriptions of plummeting blood glucose. Plus drinking something sugary (usually) makes it all disappear within 10-15 minutes.
 

Antje77

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Hi Anje

I can't quite recall but she made me lay on a couch and she did various muscle./allergy tests and asked loads of questions. It was a lifetime ago. But what I do remember was that I'd had a set of symptoms for 17 years by then and no doctor had ever suggested blood glucose problems.

No, my symptoms match exactly all the descriptions of plummeting blood glucose. Plus drinking something sugary (usually) makes it all disappear within 10-15 minutes.
Thanks for your answer!
I can only echo the others: The only way to know for sure if your problems are blood sugar related is to test your blood sugars.
Your test with your friends meter shows your symptoms that time were not due to low blood sugar.
It's impossible to diagnose (reactive) hypoglycemia based on symptoms alone, although the symptoms can be a good reason for more investigation.

I hope you'll find the answer as to the cause of your episodes!
 

Lamont D

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Hi Anje

I can't quite recall but she made me lay on a couch and she did various muscle./allergy tests and asked loads of questions. It was a lifetime ago. But what I do remember was that I'd had a set of symptoms for 17 years by then and no doctor had ever suggested blood glucose problems.

No, my symptoms match exactly all the descriptions of plummeting blood glucose. Plus drinking something sugary (usually) makes it all disappear within 10-15 minutes.

I have had all the allergy tests, I'm not allergic to anything that was tested for but I was diagnosed in childhood with lactose intolerance, then when going through all the tests, I found that I was intolerant to many foods mainly carbs, Some T2s are told they have a carb intolerance which basically means that eating carbs, all the modern food, has an effect on your blood glucose levels and if not addressed then your health will deteriorate over time. Any food including so called healthy foods are not healthy for me, low GI foods, which is the standard advice from doctors, will also trigger the symptoms of going high (hyper) then crashing (hypo)
Having non diabetic post prandial late reactive hypoglycaemia, is a rare condition. Because of the glucose/insulin reaction.

It will take time to know how it all works and why and how to develop a dietary plan suited to you.

Keep safe, keep asking.

Best wishes
 

DCUKMod

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@HelenBW - Based on what you say, it really would be beneficial to have a chat with your doctor.

It sounds like your naturopath experience was some time ago, but there are more extensive and sophisticated investigations that can be done these days.

Good luck with it all.
 

Jaylee

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Thank you both for replying.

I don't have a BS monitor because I only have hypos 3 or 4 times a year and they are soon put right with 500ml of juice.

I had one when a T1 friend was staying at my house and he gave me a blood test. It was 6.9 which he said is normal. We then had a bit of an argument about me using the term "hypo" when the monitor clearly showed I was not having one!

That incident put me off buying a blood sugar monitor. What would be the point of testing myself during a hypo just to get a "normal" reading? Please advise.

Hi,

6.9 is normal. However, BG meter's take a snapshot in time up to 20 minutes prior? So the "6.9" could have been caught on a drop. (Or just before one.)
Some people panic with meters when actually low. They test five minutes later & sometimes see a further drop then cram more carbs? There is a "lag" with BG monitoring some forget, resulting in possible over treatment of a hypo..
Some CGM systems lag even further behind a meter on the rise from a low, too..

I highly recommend you invest in a meter. Understand how to get the best out of it. (Possibly order a Libre sensor & download the app to scan with your phone.?)
Log these events & symptoms you have & see a doctor.

Best wishes from one T1 who believes hypoglycaemia can happen to a "norm." (I've seen it & asked first if they were on any meds.)
 

HelenBW

Member
Messages
11
Many thanks for the additional replies.

I have decided to put a really concerted effort into planning to maintain a very low carb diet. It's so obviously the right and sensible thing to do. The only thing stopping me is the craving for something indulgent, a treat.

I gave up eating all grains nearly 2 years ago so there isn't much left to eliminate by way of carbs other than my much-beloved potatoes, including hash browns and crisps, freshly squeezed orange juice, Haagen Dazs ice cream, and of course chocolate. **** these things for even existing.

I did a big shop in Iceland today and they are brilliant for keto food. It was torture to leave the Ripples and the Kettle crisps on the shelves and to buy only "good" things: I've stocked up with chops, cheese, ham, salad, green veg, prawns and mayo -- and a kilo of bacon and a dozen big eggs. I have cream, butter and lard on hand, too. My main meal today was roast pork with broccoli, and lemon tea.

Wish me luck in not caving in to the cravings!

I can't see the point in bothering my doctors. They aren't seeing anyone because of covid, and what would I be consulting them about, anyway? There is no drug for RH. The "drug" is, I suppose, a keto type diet. I could get a monitor, I suppose, but are you advocating that I test daily, regardless? Hopefully with plenty of good solid meat and lard inside me I won't be having any more hypos.
 
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DCUKMod

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Many thanks for the additional replies.

I have decided to put a really concerted effort into planning to maintain a very low carb diet. It's so obviously the right and sensible thing to do. The only thing stopping me is the craving for something indulgent, a treat.

I gave up eating all grains nearly 2 years ago so there isn't much left to eliminate by way of carbs other than my much-beloved potatoes, including hash browns and crisps, freshly squeezed orange juice, Haagen Dazs ice cream, and of course chocolate. **** these things for even existing.

I did a big shop in Iceland today and they are brilliant for keto food. It was torture to leave the Ripples and the Kettle crisps on the shelves and to buy only "good" things: I've stocked up with chops, cheese, ham, salad, green veg, prawns and mayo -- and a kilo of bacon and a dozen big eggs. I have cream, butter and lard on hand, too. My main meal today was roast pork with broccoli, and lemon tea.

Wish me luck in not caving in to the cravings!

I can't see the point in bothering my doctors. They aren't seeing anyone because of covid, and what would I be consulting them about, anyway? There is no drug for RH. The "drug" is, I suppose, a keto type diet. I could get a monitor, I suppose, but are you advocating that I test daily, regardless? Hopefully with plenty of good solid meat and lard inside me I won't be having any more hypos.

Sounds like you have a plan Helen.

Personally, in your shoes, I would acquire a meter and a pot of strips, then when/if you have a bit of a turn, you can test what your sugars are like at the time. The reflecting back on what you had eaten or drunk beforehand could give you a clue to your triggers. Even people living with a diagnosis of diabetes find that some (often carby) foods affect them in surprising ways. For some, potatoes, or rice, or whatever are blood glucose rocket fuel, and for others there is a less extreme impact.

For me, it was important to learn about my body, rather than focus on the principles.

Fingers crossed for you. Don't be a stranger. It'd be good to hear how you get along with it all.
 

HelenBW

Member
Messages
11
Thank you for your post and thank you also for making me feel so welcome.

I'm sooo relieved and grateful to be finally out of that terrifying hypo, that will keep me on track for a bit, out of sheer fear of having another.
 
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Lamont D

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15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Many thanks for the additional replies.

I have decided to put a really concerted effort into planning to maintain a very low carb diet. It's so obviously the right and sensible thing to do. The only thing stopping me is the craving for something indulgent, a treat.

I gave up eating all grains nearly 2 years ago so there isn't much left to eliminate by way of carbs other than my much-beloved potatoes, including hash browns and crisps, freshly squeezed orange juice, Haagen Dazs ice cream, and of course chocolate. **** these things for even existing.

I did a big shop in Iceland today and they are brilliant for keto food. It was torture to leave the Ripples and the Kettle crisps on the shelves and to buy only "good" things: I've stocked up with chops, cheese, ham, salad, green veg, prawns and mayo -- and a kilo of bacon and a dozen big eggs. I have cream, butter and lard on hand, too. My main meal today was roast pork with broccoli, and lemon tea.

Wish me luck in not caving in to the cravings!

I can't see the point in bothering my doctors. They aren't seeing anyone because of covid, and what would I be consulting them about, anyway? There is no drug for RH. The "drug" is, I suppose, a keto type diet. I could get a monitor, I suppose, but are you advocating that I test daily, regardless? Hopefully with plenty of good solid meat and lard inside me I won't be having any more hypos.

Hi again,
It does seem that you are going to plan your next few weeks low carb!
Your body will still crave the carbs for a while, so take it easy on yourself. Make sure you drink plenty of water and add salt at some time because the sudden drop in salt can have an effect. Be patient and hopefully you will discover like I did, quite a change in my wellbeing at not going hyper then hypo all the time.
I know it will be difficult but don't eat too much, eating just for eating sake because it is lunchtime is unnecessary and with the extra fats, you should become more satiated, this will help with constant bombardment of food.
Potatoes are for me the biggest spikes of all the carbs, it is mostly starch and water, I haven't had one for about ten years. Starchy vegetables are a worry, because you don't know what will spike you.
The aim is to maintain normal blood glucose levels at all times, this is the only treatment that works for me and other hypoglycaemic conditions. If you don't have a hyper, you don't have a hypo. Staying in normal levels will help with your health.

I have been in constant contact with my GP, why isn't your surgery seeing patients?
Or having at least phone appointments?
Testing is important, because you can get a snapshot of how your bloods are coping with food, I have kept a diary since 2012 and I still use testing to make sure I'm okay, my fasting or because I have had a change in my anxiety meds, to see why I feel awful or not, whether it's my blood levels going up if my stress level is bad enough to push it out of normal levels.
Your fasting levels can be used as a norm to see if you are going diabetic. You shouldn't because of low carb, but it is important to know.

Keep safe
 

HSSS

Expert
Messages
7,465
Type of diabetes
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Testing doesn’t have to be forever or continuous. Get an idea of what normal for you. Then just test if you get symptoms to see how that compares and write it down along with prior food and drink /activity. Without testing it’s impossible to know what blood sugars are actually doing
 
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