Reactive Hypoglycaemia

[Brunneria]

hi and welcome @GordonSSS

That is a very narrow window of comfort you have! I do NOT envy you.

The symptoms you are describing sound less like hypo symptoms and more like stress hormone reactions to the hypo.

What happens is that your body's blood glucose drifts a bit lower than it likes, and triggers a whole cocktail of stress hormones to be released - some of which are intended to stimulate the liver to release glucose into the blood stream. The shaking etc, is less the hypo, and more the stress hormones flooding the system (think of a near miss in a car accident, the symptoms are almost the same, aren't they?)

Sounds like two things are happening for you - firstly your stress hormone release is on too fine a hair trigger, and secondly, your liver is may not responding to the hormones by releasing enough glucose. Have you tracked whether your bg rises, even if your shakey feelings continue?

Please bear in mind that I am NOT medically trained, and am not qualified to diagnose ANYTHING over the internet!!!

Have they specifically tested your stress hormone levels? (that may have been the 24 hr urine collection, to eliminate Cushings disease) but there are other things that can go wrong.

Have they done an MRI at all? It was an MRI that spotted that I have a tumour in my pituitry gland that pumps out too much of one hormone.

I am sorry that I cannot offer you any answers at all, but maybe I can point you in a direction for further research, or more questions to ask, if you do go down the PRivate route.

 

[Kaz261]

No, she didn't do this test. Can you tell me a bit about what it entails and how it works? Does your blood glucose every really go low?



Cream contains barely any carbs, and meat and cheese typically contain none. How come that helps if you are symptomatic?



Yes, I had first seen a dietician, who advised me to do just that. Ironically, when I shows it to the endocrinologist I think she decided I was obsessively crazy, rather than just plain crazy!

The prolonged glucose tolerance test is done in hospital. You fast for at least 12 hours overnight and have blood taken for your fasting level. You are then given a measured amount of glucose to drink and have blood samples taken every half hour for 5 hours, unless you hypo during that time in which case they will stop the test. I had mine done privately and they send each sample to the onsite pathology lab, so they know how you're doing all the way through. My Endo said to only stop the test if I dropped below 2mmol/l. My lowest was 2.7 at 3 hours, I then slowly recovered and was back into the 5's by the end of the test.

I wouldn't eat meat, cheese or have coffee with cream if I was low as this wouldn't bring my levels up enough. If I'm mid to high 5's and feeling shaky then I would as it seems to do the trick. If I know I'm heading for a hypo then I would have a plain biscuit and wait until I'm back in the normal range. I would then follow it up with something low carb to help catch me if I drop again. Brun or Nosher would be better to advise on this.

If you're not getting anywhere with your GP or current Endo, I would seriously think about going private. When you're looking for a consultant, I don't think it would be unreasonable to ask if they know about RH. Good luck and just remember you're definately NOT crazy, perhaps just a little weird like the rest of us RHer's!!

 

[GordonSSS]

Sounds like two things are happening for you - firstly your stress hormone release is on too fine a hair trigger, and secondly, your liver is may not responding to the hormones by releasing enough glucose. Have you tracked whether your bg rises, even if your shakey feelings continue?

...

Have they specifically tested your stress hormone levels? (that may have been the 24 hr urine collection, to eliminate Cushings disease) but there are other things that can go wrong.

Have they done an MRI at all? It was an MRI that spotted that I have a tumour in my pituitry gland that pumps out too much of one hormone.

I am sorry that I cannot offer you any answers at all, but maybe I can point you in a direction for further research, or more questions to ask, if you do go down the PRivate route.

A while ago I came to a similar conclusion; I just can't see how it could be anything other than a hormone issue. Of course, I'm not a doctor though!

I think the 24H urine collection may have checked epinephrine levels. I think the test may have been flawed though, as the consultant actually asked me not to revert to a carb based diet during the test, and to keep low carbing. So of course, I felt absolutely fine for the duration of the collection :-/

No MRI was done.

I think I am going to go down the private route - any advice on how to find a private endocrinologist
who isn't going to fobb me off would be appreciated!

 

[GordonSSS]

The prolonged glucose tolerance test is done in hospital. You fast for at least 12 hours overnight and have blood taken for your fasting level. You are then given a measured amount of glucose to drink and have blood samples taken every half hour for 5 hours, unless you hypo during that time in which case they will stop the test. I had mine done privately and they send each sample to the onsite pathology lab, so they know how you're doing all the way through. My Endo said to only stop the test if I dropped below 2mmol/l. My lowest was 2.7 at 3 hours, I then slowly recovered and was back into the 5's by the end of the test.

What would they do if my blood sugar dropped to normal, but I turned into an anxious, sweating, confused, aggressive monster that felt he was about to die? Would the stop the test and stuff me with sugar, or call security?!

Good luck and just remember you're definately NOT crazy, perhaps just a little weird like the rest of us RHer's!!

You know, they've even had me consider myself if I'm loopy! Given all of this started long before I had even the remotest idea about the endocrine system, I just can't see how that could be though.

 

[GordonSSS]

The most important thing is not if you have it or what form, it's the fact that you struggle eating certain types of foods, which makes you feel ill.
I know the head banging frustration of not knowing what is going on for over a decade, it wasn't until my current endocrinologist, recognised the symptoms and did tests including the prolonged fasting test that gave him the diagnosis.
There is a lack of training in blood glucose disorders like ours that GPs and most endocrinologists don't know about. Mine has often referred to how lucky I was to find him, so I could get the tests.
My fasting bloods, my Hba1c, and other blood tests all appear normal and if I don't eat, my bloods stay normal, for ever!!
It isn't until I eat carbs and sugar that it triggers a hyper, then a hypo because of the excess insulin.
You must have a very good awareness of when your bloods start to go low, I do now!
But not always.
I eat a very low carb lifestyle so my bloods literally flat line. There is a certain amount of carbs that you have to eat, but meat and salad veg and eggs, plus others have little or none.
There is still an objection to very low carbing because, which ever dietician or doctor including my endo insist I eat some carbs, the problem I see, is I've been very low for two years and my health has not been better for a long time, decades!
If you do not want to eat that which makes you feel that way, then why do it?
I have learnt not to! Why do I have to?
I have a very active life and work hard, this is only because of since diagnosis and very low carbing.
I recommend because it works. It's hard, and it does get on your nerves and be frustrating because it is a rare condition especially in men.
Yes, you are unique and your RH is slightly different to mine, but to treat it is exactly the same, as the others, who are all different and unique.
We all have different problems with RH, Brun did have a survey, about certain things like can you have dairy and so on. And the results were surprising.
I'm sure she will give you the link to it!
Gordon, there are now many of us, that are getting knowledge of this condition and we want to support and encourage, read the threads and also read the low carb forum about what you can eat, even low carb bread.
You don't have to eat the baddies, there is an alternative to them.
Welcome to our unique club.

You know, most of the time I don't even really mind sticking to a low-carb diet. I still have a lot of variety in my diet and eat lots of low-carb vegetables (and I'm one of those hateful freaks that actually likes salad!), eggs, greek yoghurt, a variety of cheeses, fish, meat, and occasionally almond/coconut flour based 'bread' or 'cake'. My wife is sometimes jealous of my fabulous looking lunches, such as paneer tikka or halloumi salad, while she has a boring sandwich Come time for the family meal at dinner time, I usually have the same, but just miss out the rice/pasta/noodles/couscous/potatoes/whatever.

Before I was low-carbing, I was actually high-carbing (on the advice of a GP I'd seen around 9-10 years ago), essentially keeping my blood sugar elevated all of the time so it wouldn't drop too much (now that I've tried to educate myself on this, I can see now how stupid this was). I tried to eat lots and lots of low GI carbs, which did help a bit, but still left me with 'hypos' several times a week. I hated it too, because I'd need to eat even if I wasn't even hungry. Since going low-carb, I can only eat when I'm hungry (like normal people, wow!), which these days is only really breakfast, lunch and dinner - I now rarely snack.

 

[Brunneria]

@GordonSSS

Nosher may be able to help you with his RH consultant, but I am afraid I have no suggestions.

Out of interest, when they did the 24hr urine collection test with me (about 16 years ago now, I think) they were specifically looking for Cortisol, and adrenal gland function, in order to eliminate Cushings.

Sadly, they don't test for everything, they just the one thing the consultant/registrar puts on the test request form. So unless you get a copy of the results, and discuss it with the person who requested the test, you will never know their thinking, or the implications of the result.

Could you write to the clinic secretary, and request a copy of the results? At that point, google becomes wonderfully informative, and you can check everything and get an insight into their thinking.

 

[Kaz261]

What would they do if my blood sugar dropped to normal, but I turned into an anxious, sweating, confused, aggressive monster that felt he was about to die? Would the stop the test and stuff me with sugar, or call security?!



You know, they've even had me consider myself if I'm loopy! Given all of this started long before I had even the remotest idea about the endocrine system, I just can't see how that could be though.

In all honesty, I have no idea what they would do under those circumstances, but it would be fun to find out!! Would certainly confuse the hell out of them I'm sure and might just prove your sanity!

I also had the 24 hour urine collection test, but apparently all was normal. Like you, I'm convinced my RH is hormonal and linked to adrenal function etc. I'm at loss with my Endo now as he feels he's done all the tests he can and as I went private the insurance won't pay for further tests now I have a diagnosis.

I looked into the possibility of seeing Nosher's consultant privately, but he doesn't appear to accept private patients. If you go onto the BUPA website and search for an Endocrinologist it should bring a list up. They all have a profile so you can see what they specialise in and many have an email address. I don't think it would be unreasonable to email them to see if it's an area they feel they could help. At c £200 per consultation (depending where you live I guess. I'm in the Midlands) plus the cost of any investigations/tests, it's not going to be a cheap process. Good luck!

 

[GordonSSS]

In all honesty, I have no idea what they would do under those circumstances, but it would be fun to find out!! Would certainly confuse the hell out of them I'm sure and might just prove your sanity!

I also had the 24 hour urine collection test, but apparently all was normal. Like you, I'm convinced my RH is hormonal and linked to adrenal function etc. I'm at loss with my Endo now as he feels he's done all the tests he can and as I went private the insurance won't pay for further tests now I have a diagnosis.

I looked into the possibility of seeing Nosher's consultant privately, but he doesn't appear to accept private patients. If you go onto the BUPA website and search for an Endocrinologist it should bring a list up. They all have a profile so you can see what they specialise in and many have an email address. I don't think it would be unreasonable to email them to see if it's an area they feel they could help. At c £200 per consultation (depending where you live I guess. I'm in the Midlands) plus the cost of any investigations/tests, it's not going to be a cheap process. Good luck!

I'm in North East Scotland, so the nearest consultant is 100 miles away.. guess I'll also around have 6 hours of wasted travel time, plus £100 or so for the

Any idea about the possible cost of tests?

 

[Lamont D]

What would they do if my blood sugar dropped to normal, but I turned into an anxious, sweating, confused, aggressive monster that felt he was about to die? Would the stop the test and stuff me with sugar, or call security?!



You know, they've even had me consider myself if I'm loopy! Given all of this started long before I had even the remotest idea about the endocrine system, I just can't see how that could be though.

Yes, to both! Lol!
Because I didn't know what was going on and the sister and the ward doctor or uncle Tom cobbly that was in the ward at the time. They all insisted that I down more glucose or a sandwich or chocolate after the first time that had me in hospital for nearly 12 hours because my blood levels wouldn't normalize, just up and down, even a phone call to my endo, didn't change their opinions, until I insisted I had just one rich tea biscuit and a cuppa, black, no sugar did my bloods return to normal.
They aren't trained to treat a hypo gently and slowly.

 

[Kaz261]

I'm in North East Scotland, so the nearest consultant is 100 miles away.. guess I'll also around have 6 hours of wasted travel time, plus £100 or so for the

Any idea about the possible cost of tests?

No idea how much any tests would cost, sorry. Mine were covered by my health insurance, I only know the cost of the initial consultation because i had to pay an excess on the policy. The total initial consultation cost was £180. That's all I can tell you. 100 miles is a long way to have to travel, but would be worth it for some answers.

 

[GordonSSS]

No idea how much any tests would cost, sorry. Mine were covered by my health insurance, I only know the cost of the initial consultation because i had to pay an excess on the policy. The total initial consultation cost was £180. That's all I can tell you. 100 miles is a long way to have to travel, but would be worth it for some answers.

I don't have health insurnace, and I guess they don't cover existing conditions (whether diagnosed or not)?

 

[Kaz261]

I don't have health insurnace, and I guess they don't cover existing conditions (whether diagnosed or not)?

Ooh, not sure. They don't usually cover existing conditions but technically you haven't been diagnosed with anything. I think you will still need a GP's referral letter so will need your Doctor on board I'm afraid.

 

[Kaz261]

Hi, Kaz,

I don't really count carbs, I simply don't eat grains very often and no sugar at all. Bread seams to be ok now, however I keep it down to a couple of slices per week. And I don't over eat. I also drink max one pint and a half at once, otherwise my blood glucose levels drop.

My RH started also at 39, and I was getting mid-cycle periods and then a cyst. I had a diagnostic laparoscopy that was fine. Then my periods stopped for months and then came back, etc.. till nothing. The thing is that it's not very good to get the menopause too young. You can always test your FSH to see how your ovaries are doing.

I guess age becomes an issue for almost everything!

I have had a test recently to see if I was near to the menopause but it came back ok. I don't know the exact result but Doc said it was fine. My hormones definately play havoc with my sugar levels though. My RH is just so random. I have days where my bs is in the normal range all day but as soon as I get to low 5's I feel hypo, even though I haven't hyper'd or dropped fast. Frustrates the hell out of me, which of course just makes it worse .

I thought life was supposed to begin at 40! We must have peaked too soon!! x

 

[Lamont D]

I don't have health insurnace, and I guess they don't cover existing conditions (whether diagnosed or not)?

I think it would be best for you to get as Kaz suggested to get a referral from your GP and pay the petrol, train money.
She has also suggested, to ask your GP to get referred to an endocrinologist who knows about RH, or just blood glucose disorders. I have to travel to Manchester to see mine. It is definitely a lot less than going private and then you might not get one who would recognise what is happening. I know @Linagirl is seeing him shortly.
If you want his name, I would gladly pm you.

 

[Artstruc]

The prolonged oral glucose test, is done in hospital, it involves drinking a glucose load normally 75gms. It is a fasting test.
Bloods are taken before and every half hour after, also take bloods in vials from a cannula, to send to labs, to rule out other conditions.
Usually, you have a spike within the first hour, then gradually come down towards normal levels, but continue into hypo. After about three and a half hours to four sometimes five hours, as we are all different.
Once you hypo low enough and bloods are taken. Then the test will stop and you will need something to slowly bring you back up to normal levels.
If you hypo, the specialist will probably want more tests, breakfast test, or a 72 hour fasting test to rule out other conditions.
Hope this helps

Can't see the point of OGT, we all know what the result will be, unless they test insulin levels as LBG is a symptom of too much insulin. Thanks Brunneria & [Dr?] Kraft, the insulin assay. What happens to the excess glucose when we are skinny & insulin can't pack it away in fat cells? Do we **** it out?
I am trying [so far successfully] not eating breakfast as even bullet proof coffee sends me hypo if I don't get out to work [exercise] fast enough. The hunter gatherers went out to make a kill, ate the liver to bring the carcass home. My idea being that by depleting my glycogen reserves insulin will do what it is supposed to do & replenish/ increase glycogen reserves in the liver & muscles. The trouble I have is eating too much when I break .... fast. I have more to research on satiety & hormones.
A recent improvement was when I stopped eating fruit. Fructose is processed differently than glucose. I hope to get fruit back but for now I can't even eat a carrot!
I feel for Gordon. In 1997, after 8 years, my Dr. wrote I had a "Major Depressive Illness with Obsessive Compulsive symptoms and Somatic Pre-occupations." "He does best with a sensible, pragmatic approach to his treatment & acceptance of his alternate diagnoses".
I cannot agree with & am sick of [everywhere] people saying 'everyone is different' or 'what works for you'. When people use yogurt to cope with their dairy consumption or compromised gut biota and a cookie or slice of bread occasionally is OK?
No, I don't want everyone to be the same. If people were like cars there are hundreds of different models & ages but they all run on petrol. If you put tomato juice in they fail!

 

[Lamont D]

The object of a prolonged OGTT, is to see if a patient does or doesn't hypo.
And the bloods they can test for other conditions.
You have a great take on the condition and through your experience, you would be justified in being ****** off.
Your doctor, has summed you up perfectly, from what I gather from your post.
But aren't all RH ers the same, we have to be obsessive, compulsive and not as the norm, we have a condition that is basically what the normal staple diet of our times is going to make us very ill if we don't have control.
Everything we have been told, since childhood, is to feed our faces with good healthy carbs. To eat three square meals a day and can have treats whenever.
The whole world has gone mad on refined carbs, is it any wonder that nature has created a condition that goes against the ebb and flow of modern life?
Yes, we all need fuel, but at what cost at the petrol pump,? Can we fuel our cars with petrol, unleaded, diesel, hydrogen, or just sunlight?
The design of an engine is crucial to what we put in our tanks.
It's the same with how we process our food and how our hormones react.
You can still have fat and be thin, visceral fat can just line your organs, there are many diabetics that have little or no fat threshold, and have insulin resistance.
The excess insulin does go out through the bladder if not turned into fat. You may have more or less than me or others with RH. I'm not going to say, we etc.
We have to treat this condition with the respect that weirdness of medicine dictates.
I can spout ********, if I want! You don't have to be a doctor to do that.
We are weird, the condition is weird, the way we treat it is weird, the reactive part of what are hormones do to us is weird, our glucose is used weirdly and insulin is overproduced is chuffin weird. We are in doubt weird.
The good thing about this weirdness is if we have good control, we become 'not weird' and do become healthy!
Most doctors cannot grasp this weirdness!

I would like to think that you can give us a lot more of your insight into our weirdness.

Best wishes,
Nosher.

 

[Brunneria]

glucose intolerance - in all its various forms - can easily be mistaken for all sorts of emotional and psychological problem,s.

physical symptoms are often dismissed as psychosomatic, and depression is an epidemic amongst diabetics.

I shudder to think how many hypos and hypers are dismissed as anxiety, panic attacks and various mental issues, every day!

My doctor and family were certainly happy to label my issues as moodiness, neurosis and compulsive eating - yet they all vanished overnight when I went low enough carb. And it was DEEPLY satisfying, after being patronised for 20+ years, to be able to turn around and say 'yes, my symptoms are due to RH and a benign pituitry gland tumour. You can stop being so judgemental now.'

This is why having a place like this, on the forum, where we can share stories and coping mechanisms is so valuable.

 

[Artstruc]

Thanks Nosh & Brun, if I may call you that. Been working well the last few days. The previous 2 months I had been spending 3 - 6 hrs researching on the computer. Pre-dawn now before I can get out & my comp time is now restricted by 'a normal life'.
I didn't have access to your blog Nosh.
A quick review of my health highlights; when I gave up dairy, - new life. Followed within a few years when I gave up gluten, - new life. This stood me well from my 30's till now 60. My big mistake was ignoring diabetes as treating a symptom, based on the misinformation of the day, to the present. I put all those hypos down as allergic reaction to food I was eating, being compromised by being celiac & having leaky gut. It's not the 'superfoods you eat but the foods you don't eat .
A few years ago I was hospitalized [suicidal] from eating pork chops. I was amine & salicylate intolerant. [Actually it was hypo as well, from eating protein alone without fibre.] I followed The Elimination Diet Handbook by The Allergy Unit of the Royal Prince Alfred Hospital in Sydney. Those guidelines did me well until, beside a few vegetables [I was solanum intolerant], I was down to steamed chicken & rice. Couldn't get enough of that rice
Then I went Paleo. Within a week of not eating rice I went from working 1/2 a day every second day to 6,8,10 hrs a day every day for a year.The hand book was treating symptoms. They still included rice as a non gluten food!
I was skinny but still lost a pant size!
Then a pre-xmas party with vegetarian, selected paleo [high carb & too much wine] sent me reactive & I had to face diabetes.
I was RH all my life.
I was insulin resistant [Too much sugar ]. [Muscle] cells with limited insulin receptors, rejecting the excessive amounts of glucose in the blood stream & insulin trying to pump it out through the kidneys, excessive urination.
How to shut down insulin production? My pancreas must be huge! Go Keto, 4-8 weeks adaption fair enough.
I am bio hacking. By not eating breakfast [the most important meal of the day ] My body is forced to use my glycogen reserves [that's Keto]. At first it was a zombie shuffle while I backpacked 20 Lt water on a paddock spray. But when you work your hunger is overridden & I have been able to go well into the afternoon, without feeling hungry, craving, for the first time in my life.
I have to be careful with what I break,,,,fast with so I don't wake up with a low. You will know in the morning if your glycogen isn't topped up, low energy so cabbage & mayo to get out to work. I was impressed by a post from an older lady [84?] who ate one meal a day after working her garden all day.
I can assume new cells are being produced with more insulin receptors with better glycogen storage & mitochondria are developing [High Intensity Training]. The best thing is, insulin is shut down! The body is amazing at how quickly it can adapt [cure].
So, that's my take on my life & how I am winning. I long ago recognized myself as a canary in a coal mine. I am out of the mine. I would love to share my insights. How I overcame tick bites, [earlier this stream], - symptomatic. I work in bush care.
Thanks again for your understanding and your insights. It all helps in the bigger picture & I look forward to future debate.
Cheers, Andrew

 

[Lamont D]

Just a quick reply!
Yes, for me you can use my name any way an Aussie would. I have been alluded to by many different names, some of which I couldn't possibly post.
To assess my blog go to the top of the page, click on 'blogs' then, click on nosher8355 blog. The first one 'a reactionary' is the story of my struggle to get your diagnosed.
Your history is very remarkable and I doubt that even I could explain what was happening to you! You certainly would have put most GPs out of their comfort zone. And probably most endos also.
When you get to the stage that only a small amount of food is ok and taste is also included, your whole life is revolving about what to eat next.
Interesting thing about not eating, as I have intentionally tried this as part of fasting and testing. Is that if you are already keto or in ketosis as we say, that your energy levels do get better the longer you fast. Also how little you can eat, in portions daily, that it's close to starvation, but it doesn't cause malnutrition!

Don't try this at home kids!

Insulin, I have tried to get my head around the science but being a bit of a thick scouse git, in regards to the science and techie stuff, but reading tomes of internet wisdom. It very much like a lot of things in life, small quantities, good, more than small quantities, bad! We have to have it, but the smaller produced the better, but (again) the imbalance is driving our needs to work against the health of our self!

If you work in Bush care, and I hope that is not a euphemism! We have something in common, as I am groundstaff, for a sports ground.
Lots of mowing and watching grass grow. As well as looking after foliage and keeping my grass, neat and tidy!
The weather here has been unusually wet and windy! (Insert euphemisms here!)
So not a lot of sport played at amateur levels. So been doing a lot of water management, to attempt to dehydrate the grass! No such luck despite the effort!

I would like to share your down under insight into all things, especially how you continue to defy the odds against you getting your control despite the efforts of your so called health care!
I look forward to reading more!
Thanks for replying.
Best wishes.

Noshie, (as Brun calls me!)

 

[AndBreathe]

A while ago I came to a similar conclusion; I just can't see how it could be anything other than a hormone issue. Of course, I'm not a doctor though!

I think the 24H urine collection may have checked epinephrine levels. I think the test may have been flawed though, as the consultant actually asked me not to revert to a carb based diet during the test, and to keep low carbing. So of course, I felt absolutely fine for the duration of the collection :-/

No MRI was done.

I think I am going to go down the private route - any advice on how to find a private endocrinologist
who isn't going to fobb me off would be appreciated!

Gordon - if you look up your nearest BUPA or Other private hospital, they usually have a list of all their consultants and their specialisms. Starting with looking up Endocrinologists, I'd see if any of those listed mentioned RH. If not, you could pick ins and call his secretary and ask a few questions.

Your GP might be able to point you in the right direction. Asked something like, "In my shoes, whom would you see?" If you are making it plain you want a private referral that usually opens minds more than for an HNS referral, although it could be the same person either way.

However you choose to find your private bod, you will need a GP referral to access them. You can't just call up and make an appointment without one. It is possible to get a private GP to make a private referral, but that's double cost, before you start on any tests.

Good luck with it all.