Me and my personal Elvis

[Shaky-kate]

Hi I,m kate, I did post earlier.

Where on earth do i start and I bet so many will understand this too.

Elvis, started to turn up in 1992, Elvis is what I call my shaking because i,m often all shook up haha. I used to do sports, mountain bike racing, running and many other things. I used to randomly to shaking, sweating then collapsing. Doctors tested me to diabetes but nothing. It got worse as i got older, falling over and a feeling of no legs under me. Got used to it in the end and just had to live with it. Then in the late 90s a deitission got involved, due to my racing and the odd energy issues I was having. well she added complex carbs, yet did I know these carbs was going to annoy Elvis even more. Just to 2013, the collapsing got worse, how do i describe it,

Describing what happens is very difficult. i can be hiking, cleaning the house, doesn't matter what it is even laying in bed, it starts was a running tingling feeling under the rib cage, at the ront. burning tingling gushing, like something has gone bang suddenly, often when bending or forcing. about 60% of the time.

What follows takes about 3-5 seconds, goes into my legs, up my body, into my arms and boom, power drops old, start to walk wobbly and out comes the food but by now its often too late its that fast. What follows is concentration gone, can't see straight, sweating like crazy, 0 power in legs. causes my lower back to give way, This used to happen 10 miles out doing hiking in Scotland on my own. i've had hypo after hypo in some walks leaving me so ill it takes days to recover and one big issue is when that happens i,m stuck. i have to walk, no help is coming. Lucky i have 26 years of hypo experience while hiking. Its caused so much damage i,m now housebound.

2022 was very bad, 2023, worst and 2024 thrashing everything. Hypos where now happening 20-40 times per day with odd days nothing happening.

The doctors, lost count on the doctors visits, blood tests so on. going back to 2013, i collapsed, only just making it back home in bedfordshire, called my doctor, he said looks like MS, 18 months of MS testing, all clear, nero, comes back, i have CFS, that was in 2019, doctors realized its not CFS, then says in 2023 neurologic issues, FND, late 2023. It was only in 2024 when Elvis wouldn't leave the building where the hypos where everyday apart from morning until eating (KEY BIT THAT) but by now i've been to the doctor and hospital so many times it became a joke, it was only till i bought another blood sugar monitor did the doctor take notice, never once did any doctor offer me a blood monitor from 1991.

To my surprises, my bloods were insane, hypos from 4.3 depending on what i was doing. so walking, hypos would start at 4.3, at home 3.8 but trying to keep those blood sugar levels in the 5 range was impossible, even on a good day and soon after starting to walk the levels would be 4.4 then soon into a hypo, food made no difference, would bump the levels up for 30 minutes before going down again.

Doctor said try some glucose tables, ohh dear, that upset Elvis, yes they brought me back from a hypo but for a very short time.

The Keto diet and for the first time since 1991 Elvis never showed up. wow the difference, hiking 10 hils, no issues, running 7 miles ok for my age. my concentration was unreal, felt lively and alive for the first time BUT it was short lived. 4 months of freedom slowly came to an end. My lifestyle is very adventurous, i live in a motorhome to seek hiking running, what i live for but the keto diet wasn't providing any energy to power hill climbing or running, resulting in lactic acid from hell. I've done some research into the keto diet and its not great for people who do a lot of hard excise so carbs had to be added and slowly the leg problems started to come back which just before Christmas left to my lower bowel bursting out my groin leading to me being bedridden doctors often and now unable to walk to.

The doctor thinks the low blood sugar levels when i,m out hiking, (it causes my quad muscle to stop working so stresses parts of the body that's mostly not used) stressed that area so badly it could not handle anymore.

Was in hospital on 20-22 for 48 hour fasting test and that didn't go to plan. it went so wrong the testing was very random

1st 5.6
4.8
4.4 very slight hypo lasting about 2 minutes
4.8
3.7 same type hypo when standing but lasted seconds
4.8
3.4
3.6
4.4
3.7
3.4 nearly passed out while standing started to go into hypo but stopped when the nurse put me in bed

never seen my bloods doing this and never been hypo free under 4.3 it was like my body kept stopping the hypos when its never done that once

then doctors said this is crazy, tested ketones, 9.8 had to go on a drip for fluids, brought it down to 3.8 said its not working due to something going on inside me.

Doctors had to end the test, wasn't getting anywhere, confused everyone.

What ever this is has destroyed my life. have no life now. My body will not allow me to do anything!

Kate.

ps i,m a **** speller.

 

[AndBreathe]

Hi I,m kate, I did post earlier.

Where on earth do i start and I bet so many will understand this too.

Elvis, started to turn up in 1992, Elvis is what I call my shaking because i,m often all shook up haha. I used to do sports, mountain bike racing, running and many other things. I used to randomly to shaking, sweating then collapsing. Doctors tested me to diabetes but nothing. It got worse as i got older, falling over and a feeling of no legs under me. Got used to it in the end and just had to live with it. Then in the late 90s a deitission got involved, due to my racing and the odd energy issues I was having. well she added complex carbs, yet did I know these carbs was going to annoy Elvis even more. Just to 2013, the collapsing got worse, how do i describe it,

Describing what happens is very difficult. i can be hiking, cleaning the house, doesn't matter what it is even laying in bed, it starts was a running tingling feeling under the rib cage, at the ront. burning tingling gushing, like something has gone bang suddenly, often when bending or forcing. about 60% of the time.

What follows takes about 3-5 seconds, goes into my legs, up my body, into my arms and boom, power drops old, start to walk wobbly and out comes the food but by now its often too late its that fast. What follows is concentration gone, can't see straight, sweating like crazy, 0 power in legs. causes my lower back to give way, This used to happen 10 miles out doing hiking in Scotland on my own. i've had hypo after hypo in some walks leaving me so ill it takes days to recover and one big issue is when that happens i,m stuck. i have to walk, no help is coming. Lucky i have 26 years of hypo experience while hiking. Its caused so much damage i,m now housebound.

2022 was very bad, 2023, worst and 2024 thrashing everything. Hypos where now happening 20-40 times per day with odd days nothing happening.

The doctors, lost count on the doctors visits, blood tests so on. going back to 2013, i collapsed, only just making it back home in bedfordshire, called my doctor, he said looks like MS, 18 months of MS testing, all clear, nero, comes back, i have CFS, that was in 2019, doctors realized its not CFS, then says in 2023 neurologic issues, FND, late 2023. It was only in 2024 when Elvis wouldn't leave the building where the hypos where everyday apart from morning until eating (KEY BIT THAT) but by now i've been to the doctor and hospital so many times it became a joke, it was only till i bought another blood sugar monitor did the doctor take notice, never once did any doctor offer me a blood monitor from 1991.

To my surprises, my bloods were insane, hypos from 4.3 depending on what i was doing. so walking, hypos would start at 4.3, at home 3.8 but trying to keep those blood sugar levels in the 5 range was impossible, even on a good day and soon after starting to walk the levels would be 4.4 then soon into a hypo, food made no difference, would bump the levels up for 30 minutes before going down again.

Doctor said try some glucose tables, ohh dear, that upset Elvis, yes they brought me back from a hypo but for a very short time.

The Keto diet and for the first time since 1991 Elvis never showed up. wow the difference, hiking 10 hils, no issues, running 7 miles ok for my age. my concentration was unreal, felt lively and alive for the first time BUT it was short lived. 4 months of freedom slowly came to an end. My lifestyle is very adventurous, i live in a motorhome to seek hiking running, what i live for but the keto diet wasn't providing any energy to power hill climbing or running, resulting in lactic acid from hell. I've done some research into the keto diet and its not great for people who do a lot of hard excise so carbs had to be added and slowly the leg problems started to come back which just before Christmas left to my lower bowel bursting out my groin leading to me being bedridden doctors often and now unable to walk to.

The doctor thinks the low blood sugar levels when i,m out hiking, (it causes my quad muscle to stop working so stresses parts of the body that's mostly not used) stressed that area so badly it could not handle anymore.

Was in hospital on 20-22 for 48 hour fasting test and that didn't go to plan. it went so wrong the testing was very random

1st 5.6
4.8
4.4 very slight hypo lasting about 2 minutes
4.8
3.7 same type hypo when standing but lasted seconds
4.8
3.4
3.6
4.4
3.7
3.4 nearly passed out while standing started to go into hypo but stopped when the nurse put me in bed

never seen my bloods doing this and never been hypo free under 4.3 it was like my body kept stopping the hypos when its never done that once

then doctors said this is crazy, tested ketones, 9.8 had to go on a drip for fluids, brought it down to 3.8 said its not working due to something going on inside me.

Doctors had to end the test, wasn't getting anywhere, confused everyone.

What ever this is has destroyed my life. have no life now. My body will not allow me to do anything!

Kate.

ps i,m a **** speller.

How long did your test last, and how often were your bloods being monitored?

Have you explored any of the heavy keto groups around, like Type 1 grit. As I understand it, if you are going to do heavy exercise, you need to fuel earlier than if you are using carbs for energy, so that the proteins and fats can be metabolised. Sugar starts metabolising in the mouth. That's not so with fats in particular.

It might be worth a look at Dr Ian Lake's page. He is a UK based GP, with T1 who is into endurance exercise and keto living. I appreciate you don't have T1, but you do have metabolic challenges for sure.

This challenge is some years ago now, but it shows what can be done - by some. https://www.diabetes.co.uk/blog/2018/08/gp-type-1-diabetes-runs-low-carb/

To be clear, I'm not saying you are doing anything wrong, just maybe offering up some resources.

Ian Lake is very nice man. He has a social medial presence on all the usual platforms so is easy to find, if you choose to engage in some way.

 

[Shaky-kate]

How long did your test last, and how often were your bloods being monitored?

Have you explored any of the heavy keto groups around, like Type 1 grit. As I understand it, if you are going to do heavy exercise, you need to fuel earlier than if you are using carbs for energy, so that the proteins and fats can be metabolised. Sugar starts metabolising in the mouth. That's not so with fats in particular.

It might be worth a look at Dr Ian Lake's page. He is a UK based GP, with T1 who is into endurance exercise and keto living. I appreciate you don't have T1, but you do have metabolic challenges for sure.

This challenge is some years ago now, but it shows what can be done - by some. https://www.diabetes.co.uk/blog/2018/08/gp-type-1-diabetes-runs-low-carb/

To be clear, I'm not saying you are doing anything wrong, just maybe offering up some resources.

Ian Lake is very nice man. He has a social medial presence on all the usual platforms so is easy to find, if you choose to engage in some way.

Hi, 48 hour test, almost 3 days, the blood monitoring increased a lot from 6 hours to every few. I feel they team gave in in the end.

Oddly I have found during the keto, i was running and hiking with food, taking a few snacks just incase. my bloods would remin at 4.3-5 for around 8 hours but with breakfast, it would go up then down much faster. The longer the fasting the better i felt, up to 18 hour fasting, not an issue apart from lssong power to legs due to no glucogen to power high demand climbs, falt walking still was ok.

No its ok, i only learn in July last year what I have, never heard of the keto which is mostly carnivor, i can't stand meat so had to change it and still have to charge it much more.

I hope to do a short walk tomorrow as today been testing, blood pressure and sugar levels, been feeling fine today so they are base levels for tomorrow..

Will look at that link thanks.

 

[AndBreathe]

Hi, 48 hour test, almost 3 days, the blood monitoring increased a lot from 6 hours to every few. I feel they team gave in in the end.

Oddly I have found during the keto, i was running and hiking with food, taking a few snacks just incase. my bloods would remin at 4.3-5 for around 8 hours but with breakfast, it would go up then down much faster. The longer the fasting the better i felt, up to 18 hour fasting, not an issue apart from lssong power to legs due to no glucogen to power high demand climbs, falt walking still was ok.

No its ok, i only learn in July last year what I have, never heard of the keto which is mostly carnivor, i can't stand meat so had to change it and still have to charge it much more.

I hope to do a short walk tomorrow as today been testing, blood pressure and sugar levels, been feeling fine today so they are base levels for tomorrow..

Will look at that link thanks.

If you are veggie, I'd definitely be doing a food diary with blood glucose numbers and symptoms. It might be a bit of work, but it could be a real investment in yourself. You could get some real insight. A couple of LIbre sensors would be great for you, but they are costly. They do, however measure your bloods 24/7 for 2 weeks, per sensor.

Honestly, it seems likely if you can limit the highs, the lows will likely also be limited.

I liken RH to being a bit like standing in a room, throwing a tennis ball upwards. You're likely to be able to catch the ball on the way down most of the time, but it you throw it up with a bit more oooooomph and it hits the ceiling, the downward speed is also likely to be faster, making it harder to catch the ball.

Limit the highs (tennis ball hitting the ceiling) and you can likely catch the ball (insulin pretty much matching the sugars.

Again, observationaly, once someone with RH gets a bit of a grasp of the changes they need, and/or the foods they need to limit or avoid, it gets easier, simply because they feel better.

Good luck with it all. You could do with catching a break, somewhere along the line.

 

[Shaky-kate]

Funny you say that, been testing for many months, which foods sends my levels up. anything over 8 sends me jittery. under 8 seems ok. Testing foods is like what you say.

Have a phone call with the gp on the 3rd, just after my results, i would like a full time monitor like a freestyle, its impossible to keep track by pricking my fingers every 15 minutes tbh. wont have any fingers left lol.

kind of funny this, normal white pasta spikes the levels to around 10, give or take, wholemeal 8.5 ish, still same bloating tho. yet a pot noodle only takes it to 7.5 ish, sugar doesn't seem to be the issues.

if i do my normal, have a salad, hardly moves my levels, but add salad cream and not that much it sends it through the roof. and the funny thing, when having a hypo out hiking i take those lift tablets, 5 is meant to be max and nothing much happens, so have to take up to 8 and my levels only hit 5.4 then feel sick as.

If only i didn't have to eat it would be great my comfy levels at the moment without doing any exercise is from 5-7.5, not much in the way of freedom, it seems to spread itself out when i get fitter.

Only really started to release last spring how difficult it is.

 

[Antje77]

if i do my normal, have a salad, hardly moves my levels, but add salad cream and not that much it sends it through the roof.

The fats from the cream may delay the carb hit so you'll see it on your meter rather than the spike having come and gone when you test. Disclaimer: I have no idea how many carbs in salad cream, never heard of it so far. So it might be the carbs.

when having a hypo out hiking i take those lift tablets, 5 is meant to be max and nothing much happens, so have to take up to 8 and my levels only hit 5.4 then feel sick as.

Can you aim for normal levels when treating? There is no need to go up to 5.4, just around 4 is a normal level. With a functioning pancreas producing insulin it's very hard to force your blood glucose to be higher than where your body likes it to be, it'll fight those glucose tablets with more insulin.

i would like a full time monitor like a freestyle, its impossible to keep track by pricking my fingers every 15 minutes tbh. wont have any fingers left lol.

They're still giving out a two week free sample: https://www.freestyle.abbott/uk-en/getting-started/sampling.html
But mind, while those sensors are very useful to spot patterns, they aren't to be trusted for absolute numbers. Mine for instance tend to read 1 to 2 mmol/l lower than a fingerprick, so please don't treat hypos based on this unless confirmed with a fingerprick.

If it were me, I'd use it to find patterns around food, and as a heads up on when I'd want to do a fingerprick test.

 

[Lamont D]

Hi I,m kate, I did post earlier.

Where on earth do i start and I bet so many will understand this too.

Elvis, started to turn up in 1992, Elvis is what I call my shaking because i,m often all shook up haha. I used to do sports, mountain bike racing, running and many other things. I used to randomly to shaking, sweating then collapsing. Doctors tested me to diabetes but nothing. It got worse as i got older, falling over and a feeling of no legs under me. Got used to it in the end and just had to live with it. Then in the late 90s a deitission got involved, due to my racing and the odd energy issues I was having. well she added complex carbs, yet did I know these carbs was going to annoy Elvis even more. Just to 2013, the collapsing got worse, how do i describe it,

Describing what happens is very difficult. i can be hiking, cleaning the house, doesn't matter what it is even laying in bed, it starts was a running tingling feeling under the rib cage, at the ront. burning tingling gushing, like something has gone bang suddenly, often when bending or forcing. about 60% of the time.

What follows takes about 3-5 seconds, goes into my legs, up my body, into my arms and boom, power drops old, start to walk wobbly and out comes the food but by now its often too late its that fast. What follows is concentration gone, can't see straight, sweating like crazy, 0 power in legs. causes my lower back to give way, This used to happen 10 miles out doing hiking in Scotland on my own. i've had hypo after hypo in some walks leaving me so ill it takes days to recover and one big issue is when that happens i,m stuck. i have to walk, no help is coming. Lucky i have 26 years of hypo experience while hiking. Its caused so much damage i,m now housebound.

2022 was very bad, 2023, worst and 2024 thrashing everything. Hypos where now happening 20-40 times per day with odd days nothing happening.

The doctors, lost count on the doctors visits, blood tests so on. going back to 2013, i collapsed, only just making it back home in bedfordshire, called my doctor, he said looks like MS, 18 months of MS testing, all clear, nero, comes back, i have CFS, that was in 2019, doctors realized its not CFS, then says in 2023 neurologic issues, FND, late 2023. It was only in 2024 when Elvis wouldn't leave the building where the hypos where everyday apart from morning until eating (KEY BIT THAT) but by now i've been to the doctor and hospital so many times it became a joke, it was only till i bought another blood sugar monitor did the doctor take notice, never once did any doctor offer me a blood monitor from 1991.

To my surprises, my bloods were insane, hypos from 4.3 depending on what i was doing. so walking, hypos would start at 4.3, at home 3.8 but trying to keep those blood sugar levels in the 5 range was impossible, even on a good day and soon after starting to walk the levels would be 4.4 then soon into a hypo, food made no difference, would bump the levels up for 30 minutes before going down again.

Doctor said try some glucose tables, ohh dear, that upset Elvis, yes they brought me back from a hypo but for a very short time.

The Keto diet and for the first time since 1991 Elvis never showed up. wow the difference, hiking 10 hils, no issues, running 7 miles ok for my age. my concentration was unreal, felt lively and alive for the first time BUT it was short lived. 4 months of freedom slowly came to an end. My lifestyle is very adventurous, i live in a motorhome to seek hiking running, what i live for but the keto diet wasn't providing any energy to power hill climbing or running, resulting in lactic acid from hell. I've done some research into the keto diet and its not great for people who do a lot of hard excise so carbs had to be added and slowly the leg problems started to come back which just before Christmas left to my lower bowel bursting out my groin leading to me being bedridden doctors often and now unable to walk to.

The doctor thinks the low blood sugar levels when i,m out hiking, (it causes my quad muscle to stop working so stresses parts of the body that's mostly not used) stressed that area so badly it could not handle anymore.

Was in hospital on 20-22 for 48 hour fasting test and that didn't go to plan. it went so wrong the testing was very random

1st 5.6
4.8
4.4 very slight hypo lasting about 2 minutes
4.8
3.7 same type hypo when standing but lasted seconds
4.8
3.4
3.6
4.4
3.7
3.4 nearly passed out while standing started to go into hypo but stopped when the nurse put me in bed

never seen my bloods doing this and never been hypo free under 4.3 it was like my body kept stopping the hypos when its never done that once

then doctors said this is crazy, tested ketones, 9.8 had to go on a drip for fluids, brought it down to 3.8 said its not working due to something going on inside me.

Doctors had to end the test, wasn't getting anywhere, confused everyone.

What ever this is has destroyed my life. have no life now. My body will not allow me to do anything!

Kate.

ps i,m a **** speller.

I'm glad you reposted and including the readings from your fasting test.
for RH, during a fasting test your BG levels should not go below 3.5 mmols.
In my case, I was always in the 4's.
And the rest is symptomatic of many conditions.
I'm not saying it isn't hypoglycaemia, but not the RH, I have researched.

If you can read below my post.
Because of my breakdown five years, I suffered some neurological damage which includes Essential Tremor disorder, and restless legs. And I get the similarities in your shaking. It's worse first thing, and my legs only stop twitching when I'm standing, but because I'm in keto, my energy levels are very good.
However, before diagnosis I get the tiredness, lethargy, just wanting to rest, and sweats, bad dreams, and so on.
Not being able to do much.
I do think, when a metabolic condition grips your body so bad, as if you are really ill, and the doctors are confused because of the rapid symptoms of so many readings being up and down, and add fluctuations in BG levels, BP levels, etc. There is no clear reason for it.
Blood panel readings that are normal, very their thinking that it is impossible to be this way.
And through the science of my condition. The overshoot of insulin is too much for the glucose. That is why I go hypo. Also because I can't respond with something called glucogenisis (liver dump) that usually prevents hypoglycaemia in everyone else. And that also shows in your readings during the fasting test.
And it could be why, the exercise is too much for you.
I do think your endocrinologist will be wanting more tests, unless there is something in the tests in the labs.
Best wishes
Keep asking, keep safe.

 

[Shaky-kate]

The fats from the cream may delay the carb hit so you'll see it on your meter rather than the spike having come and gone when you test. Disclaimer: I have no idea how many carbs in salad cream, never heard of it so far. So it might be the carbs.

Can you aim for normal levels when treating? There is no need to go up to 5.4, just around 4 is a normal level. With a functioning pancreas producing insulin it's very hard to force your blood glucose to be higher than where your body likes it to be, it'll fight those glucose tablets with more insulin.

They're still giving out a two week free sample: https://www.freestyle.abbott/uk-en/getting-started/sampling.html
But mind, while those sensors are very useful to spot patterns, they aren't to be trusted for absolute numbers. Mine for instance tend to read 1 to 2 mmol/l lower than a fingerprick, so please don't treat hypos based on this unless confirmed with a fingerprick.

If it were me, I'd use it to find patterns around food, and as a heads up on when I'd want to do a fingerprick test.

No i mean with the levels, so 5s are good, 4s not so, just when i,m eating normal how fast it can spike. i know there are sugars in salad cream that does the spiking, sugars don't seem to be such an issue, but if i have jelly babies, omg, its like eating a box of sleeping pills,i never did test my levels after eating jelly babies, but its very high heart rate followed by headaches then sleeping like mad.

Thanks just did that freestyle thing, sending it to my doctors address.

 

[AndBreathe]

Funny you say that, been testing for many months, which foods sends my levels up. anything over 8 sends me jittery. under 8 seems ok. Testing foods is like what you say.

Have a phone call with the gp on the 3rd, just after my results, i would like a full time monitor like a freestyle, its impossible to keep track by pricking my fingers every 15 minutes tbh. wont have any fingers left lol.

kind of funny this, normal white pasta spikes the levels to around 10, give or take, wholemeal 8.5 ish, still same bloating tho. yet a pot noodle only takes it to 7.5 ish, sugar doesn't seem to be the issues.

if i do my normal, have a salad, hardly moves my levels, but add salad cream and not that much it sends it through the roof. and the funny thing, when having a hypo out hiking i take those lift tablets, 5 is meant to be max and nothing much happens, so have to take up to 8 and my levels only hit 5.4 then feel sick as.

If only i didn't have to eat it would be great my comfy levels at the moment without doing any exercise is from 5-7.5, not much in the way of freedom, it seems to spread itself out when i get fitter.

Only really started to release last spring how difficult it is.

To be honest, it seems most GP's knowledge of RH is even more scant than their proper understanding of T2, so manage your own expectations.

If salad cream raises your bloods, maybe try mayo instead. There are far more ingredients in salad cream than most mayo.

Pasta is often found to be very challenging to folks with metabolic disorders. For me, the rise would be fairly modest but lengthy and wholemeal a little less, but an even longer elevation. Pot noodles, I'd guess the dry weight of the noodles is quite low, and probably lower than you would cook as a portion of more conventional pasta.
I see an Endo for my wonky thyroid, but he takes an interest in my diabetes. He strongly recommended I adopt a gluten-free lifestyle, which has greatly improved my bloating - even though my coeliac testing panels have been "inconclusive" several times.

I don't know what you utilise as proteins in your diet, but protein can be extremely useful in terms of feeling fuller for longer, but also due to their usually very modest impacts on blood sugars.

Testing your bloods with finger pricks is all very well, but if you can afford it, a couple of Libre sensors could be a valuable investment in yourself.

Much as we hope the medics will be really helpful to us, in my experience, and that of plenty others, when it comes to metabolic challenges, we need to be our own detectives, educators and medics.

 

[Shaky-kate]

To be honest, it seems most GP's knowledge of RH is even more scant than their proper understanding of T2, so manage your own expectations.

If salad cream raises your bloods, maybe try mayo instead. There are far more ingredients in salad cream than most mayo.

Pasta is often found to be very challenging to folks with metabolic disorders. For me, the rise would be fairly modest but lengthy and wholemeal a little less, but an even longer elevation. Pot noodles, I'd guess the dry weight of the noodles is quite low, and probably lower than you would cook as a portion of more conventional pasta.
I see an Endo for my wonky thyroid, but he takes an interest in my diabetes. He strongly recommended I adopt a gluten-free lifestyle, which has greatly improved my bloating - even though my coeliac testing panels have been "inconclusive" several times.

I don't know what you utilise as proteins in your diet, but protein can be extremely useful in terms of feeling fuller for longer, but also due to their usually very modest impacts on blood sugars.

Testing your bloods with finger pricks is all very well, but if you can afford it, a couple of Libre sensors could be a valuable investment in yourself.

Much as we hope the medics will be really helpful to us, in my experience, and that of plenty others, when it comes to metabolic challenges, we need to be our own detectives, educators and medics.

Yes my gp told me to self diagnose with as many details as possible then relay back. Yes i have mayo and why i still have salad cream beats me but i,m in my 50s lol so stubborn.

You made me laugh there, my other endo used to say to me i,m very interesting with my usual issues, she had met one other so i gather these issues are not common, also the nurse in the hospital said the other day, i,m 3rd person in there in 3 years for fasting testing! so i think they are like me, still learning.

Gluten seems to be one thing that keeps popping in my head, i,m eating mothers pride white bread, its not doing anything to spike levels, even with jam. My mate has gluten issues and said try that bread.

Proteins are my biggest issue tbh, most of the time its so low i hardly have any, I really have little interest in food these days because we don't get on. I think a protein powder maybe a better option. I do eat a tin of salmon sometimes, but eating a whole tin is hard work and need 2 tins per day.

Getting my head around a lot of things at the moment, after a nightmare hospital visit, trying to get back to some form to normal seems a long way off. No doubt i,m heading for hospital very soon due to feeling dizzy often and the lump in my side is sticking out more and more.

Yes i have ordered one, will try it.

Like you i think the doctors need us to help them understand whats going on, I do a lot of research online to help myself help them.

 

[Antje77]

No i mean with the levels, so 5s are good, 4s not so

What's wrong with 4's?
Usually, 4's only give hypo symptoms in those who are used to running higher levels, the body adapts. 4's and higher 3's are normal.

sugars don't seem to be such an issue, but if i have jelly babies, omg, its like eating a box of sleeping pills,i never did test my levels after eating jelly babies, but its very high heart rate followed by headaches then sleeping like mad.

Very good idea to test when symptomatic. Struggling to not fall asleep after eating was one of my main symptoms before getting my diabetes diagnosis, it was a symptom of high BG.
Without testing you won't know if you're dealing with high or low BG.

Thanks just did that freestyle thing, sending it to my doctors address.

Let us know what you'll find usining the Libre (and don't forget to verify lows with a fingerprick before treating).
Why send it to your doctor's address and not simply to your home address? Doesn't matter really, as long as you get it, just a bit puzzled.

 

[Lamont D]

Yes my gp told me to self diagnose with as many details as possible then relay back. Yes i have mayo and why i still have salad cream beats me but i,m in my 50s lol so stubborn.

You made me laugh there, my other endo used to say to me i,m very interesting with my usual issues, she had met one other so i gather these issues are not common, also the nurse in the hospital said the other day, i,m 3rd person in there in 3 years for fasting testing! so i think they are like me, still learning.

Gluten seems to be one thing that keeps popping in my head, i,m eating mothers pride white bread, its not doing anything to spike levels, even with jam. My mate has gluten issues and said try that bread.

Proteins are my biggest issue tbh, most of the time its so low i hardly have any, I really have little interest in food these days because we don't get on. I think a protein powder maybe a better option. I do eat a tin of salmon sometimes, but eating a whole tin is hard work and need 2 tins per day.

Getting my head around a lot of things at the moment, after a nightmare hospital visit, trying to get back to some form to normal seems a long way off. No doubt i,m heading for hospital very soon due to feeling dizzy often and the lump in my side is sticking out more and more.

Yes i have ordered one, will try it.

Like you i think the doctors need us to help them understand whats going on, I do a lot of research online to help myself help them.

I was diagnosed over twelve years ago. I was the first the nearby big hospital had diagnosed.
and after a couple of years only one other. In the whole of my metropolitan area. In 2018, my endocrinologist now a professor had been trying to find how many others had been diagnosed in the whole North West of England. And it was 29. But not all were a similar symptoms and outcomes.
it is rare, but not as rare as it was. So to speak.
my endocrinologist informed me on my third appointment that more men had walked on the moon, than had been diagnosed with my condition of RH. Also, told me, that his mentor, would have said it would be impossible to have this condition, because it cannot find the cause of the science to think it could exist, but it does. And others out there that are suffering with it, like I did, shot have a clue, what is happening.
there ihas been no research, because it would not qualify as there would not be enough participants for it, cos of its diagnosed rarity.

 

[AndBreathe]

Yes my gp told me to self diagnose with as many details as possible then relay back. Yes i have mayo and why i still have salad cream beats me but i,m in my 50s lol so stubborn.

You made me laugh there, my other endo used to say to me i,m very interesting with my usual issues, she had met one other so i gather these issues are not common, also the nurse in the hospital said the other day, i,m 3rd person in there in 3 years for fasting testing! so i think they are like me, still learning.

Gluten seems to be one thing that keeps popping in my head, i,m eating mothers pride white bread, its not doing anything to spike levels, even with jam. My mate has gluten issues and said try that bread.

Proteins are my biggest issue tbh, most of the time its so low i hardly have any, I really have little interest in food these days because we don't get on. I think a protein powder maybe a better option. I do eat a tin of salmon sometimes, but eating a whole tin is hard work and need 2 tins per day.

Getting my head around a lot of things at the moment, after a nightmare hospital visit, trying to get back to some form to normal seems a long way off. No doubt i,m heading for hospital very soon due to feeling dizzy often and the lump in my side is sticking out more and more.

Yes i have ordered one, will try it.

Like you i think the doctors need us to help them understand whats going on, I do a lot of research online to help myself help them.

I haven’t eaten bread since 2011, and wholesale gluten-free a few years less. Gluten is in some surprising places.

Your need to invest in yourself. Something in your body seems to have changed, so you will have to make changes to live healthily in tandem with that realistically, you will be the one to work out the dietary plutons. Protein is a vital element, so open your mind to solution. I don’t mean necessarily meats but maybe new foods you haven’t tried before.

I find keeping things simple works, so minimising on packaged products helps. Many packaged foods have really long ingredient lists. It’s easy to sneak the tricky stuff in there.

 

[Shaky-kate]

Wow!

I think i mentioned, the hospital has had 3 people in for 48 hour fasting for the condition and that included me, so one per year from when that teat started.

My question is, we have rare conditions, so why is the NHS not doing the case studies and more?. Back in the day, doctors and hospitals used to do a case study. Was put forward for a hormone conditions case study due to villant hot flashes that used to cause me to bleed from all over my body and would burn my skin. They then stopped the case studies for that.

I would be willing to do that kind of thing. It would be interesting if the people who run this did that too tbh.

 

[Shaky-kate]

I haven’t eaten bread since 2011, and wholesale gluten-free a few years less. Gluten is in some surprising places.

Your need to invest in yourself. Something in your body seems to have changed, so you will have to make changes to like healthily in tandem with that realistically, you will be the one to work out the dietary plutons. Protein is a vital element, so open your mind to solution. I don’t mean necessarily meats but maybe new foods you haven’t tried before.

I find keeping things simple works, so minimising on packaged products helps. Many packaged foods have really long ingredient lists. It’s easy to sneak the tricky stuff in there.

That's interesting!

TBH i,m a very boring eater, same stuff, thank god fish and chips have no effect haha. and i bet that's down to the fat used to fry the chips?

I made that big mistake, when i started the keto, all was going well, what did i do, was not write nothing down, thinking I can remember this no issues, did loads of youtube videos as i have a channel , delated those videos, big mistake.

I know about when you do excise it lower the levels, bit like a load on a battery I feel. But i need to run some tests if my body will let me. Tests are, do my blood pressure and BM before i start, walk a mile then check again because what has been happening is i feel drunk a lot when walking, about a month ago i took my blood pressure monitor, felt not right did a test standing and it was just 78/98, miles too low for walking. my bm was 4.3 too. I have noticed my bloods go from 5.6 to 4 within about a mile of walking and its very hard to get them up in the 5s where i feel ok.

Edited by mods to remove reference to YouTube channel

 

[Shaky-kate]

What's wrong with 4's?
Usually, 4's only give hypo symptoms in those who are used to running higher levels, the body adapts. 4's and higher 3's are normal.

Very good idea to test when symptomatic. Struggling to not fall asleep after eating was one of my main symptoms before getting my diabetes diagnosis, it was a symptom of high BG.
Without testing you won't know if you're dealing with high or low BG.

Let us know what you'll find usining the Libre (and don't forget to verify lows with a fingerprick before treating).
Why send it to your doctor's address and not simply to your home address? Doesn't matter really, as long as you get it, just a bit puzzled.

4s with me, well, i will try and explain as i do not understand. for many many years, the hypos apare out of nowhere, sitting, standing, bending down and laying in bed, often waking me up during the night. when i started testing the hypos were always started in the 4s, mostly at 4.3 then would go down very fast, lowest i've been in 2013 was 2.3 resulted in the doctors, being told off by the doctor for not having a phone while hiking which lead to the MS testing and many other tests.

It was only this year the doctor said hypos are not in the 4s so i have something unusual going on. 2 weeks ago i tried a short 7 mile hike, mostly flat ground, didn't expect a hypos as they haven't been as bad, about 3 miles in i felt the shakes start so instead of sugary foods i tried almond nuts at 4.4 and a left the half a dextrous drink 25 mil. Nuts worked a bit. Another mile in a second stronger hypo at 4.2, more nuts and took the drink, this time it only worked a bit i thought i better get out of here. started to feel really off, and within 2 miles to get back to the van a full hypo started at 4.1 and ran out of nuts and they didn't work either so struggled to get back feeling terrible, brain fog had hit last bit couldn't see straight at all, 3.4 last test back at the van and took just over 6 hours to recover from unreal brain fog. So that 25 mil drink did nothing which makes me feel not safe.

I'm homeless i live off grid in my motorhome lol so have to have things sent to gp or post office if buying from amazon. Trying to live an adventure with a body thats suited to the scrap heap haha, i have to laugh because i just want to scream.

 

[Lamont D]

Wow!

I think i mentioned, the hospital has had 3 people in for 48 hour fasting for the condition and that included me, so one per year from when that teat started.

My question is, we have rare conditions, so why is the NHS not doing the case studies and more?. Back in the day, doctors and hospitals used to do a case study. Was put forward for a hormone conditions case study due to villant hot flashes that used to cause me to bleed from all over my body and would burn my skin. They then stopped the case studies for that.

I would be willing to do that kind of thing. It would be interesting if the people who run this did that too tbh.

I did a case study and a blurred version is on one of the recent threads.
it was to do with a drug, to reduce the spike after first phase response. To help reduce the spike, it did, and it helped with getting the symptoms reduced as well, but once you start the carbs that you cannot tolerate, it triggers the overshoot and you still hypo.
two of us was in this trial. I was patient A.
a women was patient B.
And as I was constantly not eating carbs, as I was better all round. It made taking the drug irrelevant.
So I stopped.

I think since around 2017, hospitals had better things for the resources of these case studies.
Most research and such as they do are done in universities and private companies. Mainly big pharma.

 

[AndBreathe]

That's interesting!

TBH i,m a very boring eater, same stuff, thank god fish and chips have no effect haha. and i bet that's down to the fat used to fry the chips?

I made that big mistake, when i started the keto, all was going well, what did i do, was not write nothing down, thinking I can remember this no issues, did loads of youtube videos as i have a channel , delated those videos, big mistake.

I know about when you do excise it lower the levels, bit like a load on a battery I feel. But i need to run some tests if my body will let me. Tests are, do my blood pressure and BM before i start, walk a mile then check again because what has been happening is i feel drunk a lot when walking, about a month ago i took my blood pressure monitor, felt not right did a test standing and it was just 78/98, miles too low for walking. my bm was 4.3 too. I have noticed my bloods go from 5.6 to 4 within about a mile of walking and its very hard to get them up in the 5s where i feel ok.

am i allowed to post my youtube videos? i ca show you what happens

Have you had investigations into your lowish blood pressure? Have you worn a 24/48 hours BP monitor from your GP or hospital? (If given by your GP, they usually go to a hospital for analysis.)

Yes, you got it. Our bodies and their workings are a bit of a moveable feast, which is where the Libre sensors and 24/48hr BP monitors can be helpful.
You need to do the work, recording everything - food, exercise, blood glucose, blood pressure and symptoms, on a daily timeline, so there will be a lot of lines for each day.
Hospital cased fasting tests have been around for a while. I think @Lamont D has had a couple, although quite a while ago.

Why don't they do more case studies? Unfortunately, research is usually at least partly funded by grants, charities or commercial bodies, like drug companies. More often than not (although not always), research is focused on biggest bang for the buck. There are many, many thousands with T2, but considerably fewer with RH.

I don't know where you are based, but engaging with your nearest NIHR can be worthwhile. https://www.nihr.ac.uk/

I am fortunate to live relatively close to a Centre of Excellence for a couple of areas, and also quite a decent sized NIHR. They are always looking for ideas for research studies, and these days each study has at least one patient/lay person on the study board. I have been on a couple - one of which is still ongoing, having just secured further chunky funding. I have also participated in research for 2 different studies - one for cardiac health and the other for artery disease. Being in long term remission with my T2, and slim, I rarely meet the criteria for T2 studies.

Many of the NIHR focus groups are done via Teams/Zoom (since Covid), so being right on the doorstep isn't always necessary.

 

[Shaky-kate]

Have you had investigations into your lowish blood pressure? Have you worn a 24/48 hours BP monitor from your GP or hospital? (If given by your GP, they usually go to a hospital for analysis.)

Yes, you got it. Our bodies and their workings are a bit of a moveable feast, which is where the Libre sensors and 24/48hr BP monitors can be helpful.
You need to do the work, recording everything - food, exercise, blood glucose, blood pressure and symptoms, on a daily timeline, so there will be a lot of lines for each day.
Hospital cased fasting tests have been around for a while. I think @Lamont D has had a couple, although quite a while ago.

Why don't they do more case studies? Unfortunately, research is usually at least partly funded by grants, charities or commercial bodies, like drug companies. More often than not (although not always), research is focused on biggest bang for the buck. There are many, many thousands with T2, but considerably fewer with RH.

I don't know where you are based, but engaging with your nearest NIHR can be worthwhile. https://www.nihr.ac.uk/

I am fortunate to live relatively close to a Centre of Excellence for a couple of areas, and also quite a decent sized NIHR. They are always looking for ideas for research studies, and these days each study has at least one patient/lay person on the study board. I have been on a couple - one of which is still ongoing, having just secured further chunky funding. I have also participated in research for 2 different studies - one for cardiac health and the other for artery disease. Being in long term remission with my T2, and slim, I rarely meet the criteria for T2 studies.

Many of the NIHR focus groups are done via Teams/Zoom (since Covid), so being right on the doorstep isn't always necessary.

sorry for late rply.

The nhs did say some years ago my low blood pressure wouldn't be treated in the uk but that was about 25 years ago.

just waiting for results tbh.