Dealing with illness

[Lamont D]

That’s ok, I am sure this is all having a big impact however. No I’m still waking every 2 hours at night with hypo symptoms and having dips through the day too, particularly morning and evening, like right now!!! Sometimes it’s lunchtime before I level out, It’s so frustrating and debilitating.
I have had an email from the DNS at the hospital this week to say that she will discuss the “intervention “ the consultant requested back in November as I am still waiting for the 24 hr glucose monitoring. Also waiting to hear the results of the MRI last week which I had done privately.
I’m not changing anything to my diet yet as the gastro said not to. I have been low carb since June. Reading around I think coconut oil is probably still ok anyway which I hope is the case and as I don’t eat dairy that should be helping. I didn’t drink much anyway but it’s a depressing not to be able to have the odd glass of wine

No worries, let us know how you get on, as I'm interested in how this pans out.
I'm certain coconut oil is the best to cook and add a couple of spoonfuls through the day and just before bedtime. Have you tried red wine, that is what most diabetics drink, it has some great antioxidants.

Best wishes

 

[62Rose]

Sorry I’ve only just seen this, not that familiar with how to use the forum!!
The MRI only confirms what the CT showed so nothing new to worry about thankfully. I have had a bad week working out how much pain relief to take to help control the pancreatitis, as it makes me nauseous! I am not allowed to drink any alcohol because of the pancreatitis, not the RH, it will just make it worse.
I had a small meal of casserole, red cabbage and butternut squash around 7.00, some coconut milk drink and a small piece of low carb chocolate, peanut butter and coconut oil bar at 9.15 and have just a bit of a hypo. Last night was awful but I’ve been pretty good today, I wish I could work out where I go wrong. It’s so frustrating. I saw a programme earlier that said that eating carbs for an evening meal was the best time to have them and I have found that if I have a few more in my evening meal I sometimes sleep better so I am going to keep trying that until I get this monitor fitted, still waiting and my 3 month repeat clinic appointment is only a few weeks away. The same programme tested coconut oil and cholesterol levels and found that it improves the good cholesterol so that’s something at least, if they are right!
Thanks again for your support it’s so good to talk to someone who understands.

 

[Lamont D]

Sorry I’ve only just seen this, not that familiar with how to use the forum!!
The MRI only confirms what the CT showed so nothing new to worry about thankfully. I have had a bad week working out how much pain relief to take to help control the pancreatitis, as it makes me nauseous! I am not allowed to drink any alcohol because of the pancreatitis, not the RH, it will just make it worse.
I had a small meal of casserole, red cabbage and butternut squash around 7.00, some coconut milk drink and a small piece of low carb chocolate, peanut butter and coconut oil bar at 9.15 and have just a bit of a hypo. Last night was awful but I’ve been pretty good today, I wish I could work out where I go wrong. It’s so frustrating. I saw a programme earlier that said that eating carbs for an evening meal was the best time to have them and I have found that if I have a few more in my evening meal I sometimes sleep better so I am going to keep trying that until I get this monitor fitted, still waiting and my 3 month repeat clinic appointment is only a few weeks away. The same programme tested coconut oil and cholesterol levels and found that it improves the good cholesterol so that’s something at least, if they are right!
Thanks again for your support it’s so good to talk to someone who understands.

Don't forget you are new to all this, and your body is slowly adjusting to a big change in your diet and lifestyle.
Can I suggest that after you have ate, that you go for a short walk, nothing strenuous, but I find that it helps keep your blood glucose levels in check and doing even a little bit is so good for you.


Keep on asking, let us know how you get on.

 

[62Rose]

I ate the same piece of bar with a soya coffee in the middle of a shopping trip yesterday morning and the same meal at lunch time followed by a 30 minute walk with my dog and was fine so you may be right. We are out this evening for a meal so it’s not always an option though, but I will try that when I can. Thanks

 

[62Rose]

I am finally making progress as I am now going to see the DNS at the hospital to have some bloods taken and hopefully the glucose monitor fitted on Tuesday!! Only drawback is the need to fast until 9am and the appointment is in London so I hope I can manage the train and walk at the other end! Not sure if any of this would be happening if I hadn’t rung so many times though! On Thursday I had a very bad hypo when I think I nearly passed out, a new experience for me and not one I’d like to repeat, I thought enough is enough and phoned again making sure I mentioned the hypo, it’s been such a battle the whole way through this! Just hope the end is nearly in sight and they will finally decide exactly what is going on with my sugars!

 

[Brunneria]

goodness, I hope this monitor sheds some light.

and well done for keeping pushing. I am older and wiser now, but back when things were at their worst I just gave up and worked out a food/eating regime that worked for me. Too many unhelpful and dismissive medical staff, and I just gave uptrying for an official diagnosis. In retrospect, I think i should have kept pushing. But then things were so different 30 years ago...

as I say, WELL DONE!

 

[Lamont D]

I am finally making progress as I am now going to see the DNS at the hospital to have some bloods taken and hopefully the glucose monitor fitted on Tuesday!! Only drawback is the need to fast until 9am and the appointment is in London so I hope I can manage the train and walk at the other end! Not sure if any of this would be happening if I hadn’t rung so many times though! On Thursday I had a very bad hypo when I think I nearly passed out, a new experience for me and not one I’d like to repeat, I thought enough is enough and phoned again making sure I mentioned the hypo, it’s been such a battle the whole way through this! Just hope the end is nearly in sight and they will finally decide exactly what is going on with my sugars!

Yes a constant battle!
The years I spent trying to get to the truth and the tests required for diagnosis.
Hypos, when you know what they actually are, can be really awful and worrying, especially when they are really low, at least you did test yourself.

But it doesn't stop at your appointment, you have to keep battling and learn all you can that is causing the lows.

Best wishes, keep fighting and let us know how you get on.

 

[SueJB]

I have RH, and my blood glucose levels improve with fasting (no hypos followed by hypers because the hypers and hypos don’t happen with Low Carbing).

I had a bad tummy bug Sunday to Wed last week. Spent most of my time in the bathroom with my kindle.

I had plenty of warm fluids for the first two days (cold drinks set everything of again) sipped v slowly (since gulps set everything off again).

When I started to feel better, I made some chicken soup (1 small chicken, 1 onion, 1 courgette, 1 celeriac, 1 stalk celery, 1 red pepper, water and enough stock cubes. Simmered the lot till the meat was falling off the bones, fished out the bones. Blended everything till smooth. Then had it several small mugs of it until i was up to my normal (low carb) eating again - which only took a day or so. I had a curry on Friday night

Hope you feel better soon!

Quick question, what do you eat with the curry, cauli rice or....???????

 

[Brunneria]

Quick question, what do you eat with the curry, cauli rice or....???????

Hi

I either have cauliflower rice or just have extra veg - in the curry if homemade, or I order veg side dishes instead of rice if we are eating out or having a takeaway.

 

[Lamont D]

Quick question, what do you eat with the curry, cauli rice or....???????

Or just the meat and curry, with some side salad.

 

[62Rose]

Thanks all.
I have steamed cabbage, lots, or cauliflower rice and cabbage, but always eat leafy greens of some sort with every meal. I don’t eat pre made curries, but I do use a paste when I make my own. I didn’t find it kept me that full yesterday even though I added the solid part of a tin of coconut milk. It had butternut squash, chicken and cauliflower in it and a couple of pieces of parsnip which I know are more carbohydrate heavy.

 

[myracat]

This sounds familiar, what's the pain like? My oh has been being investigated for 14 months now. They think theres some anomaly at the top of the pancreas so he has yet another ct scan on Saturday

 

[myracat]

What's RH btw?

 

[Lamont D]

What's RH btw?

Reactive Hypoglycaemia!

It's an endocrine condition, where the pancreas overshoots an insulin response to a meal containing too many carbs and sugars which triggers the reaction.
It can be controlled by diet.

The symptoms are similar to T2 diabetes.
But fasting blood glucose levels and hba1c are in normal levels but can produce episodes of hyperglycaemia followed by Hypoglycaemia. All depending on what you eat of course.

Hope that helps.

You can read more about symptoms and the many types of hypoglycaemia that posters have told us about.
Click on forums, scroll down to the sub forum on reactive hypoglycaemia and read the threads.

Best wishes

 

[62Rose]

Can anyone help me interpret these results that I hope are attached please? My consultant was off when I went for my appointment and the replacement one said my results were fine and quite within normal limits. They didn’t really talk to me much and kept saying that they didn’t know what my consultant was looking for so couldn’t advise me on the next step. So quite a disappointing time really but I’m getting used to that.
But why was I feeling rough so much of the time? And still waking up every 2 hours or so? There are little changes through the night but hardly any really. The mornings are a mystery to me too.
Thanks

 

[Lamont D]

I'm gonna try but I do not have the experience of a cgm!

Dated 30/1. Was this an OGTT?
You were given carbs @ 13.00, your glucose levels at that time were within normal levels. Though you had a very small spike, you soon went below normal levels, how low? By the chart, they give you carbs again @ 17.00. What for?
Your blood levels rose above normal levels rather quickly and more carbs were given what for?
They fluctuated below ten mmols for a couple of hours till resuming normal levels @ about 22.00 hours.

Graph two.
Dated 31/1
Your sleeping hours are in normal levels. Till you get what is called Dawn phenomenon. This is a liver dump giving you a kick start, it is common.
Until 20.00 everything seems normal. A little rise, but nowt else.

I can understand why your stand in endo said everything is normal, other than the small blood levels that dipped under, it is normal.
You may get more info when your usual endo is back.

I think, but I'm guessing is the reason why you feel rough is because of the fluctuations in bloods. Did you eat enough?
Do you think that the carbs given took you too high and because you have been very low carb, that the rise was higher than you have been for a while. This could also explain why you feel rough. If I go high enough, I feel like that. It is a hyper and that is why I avoid them!

Hope that helps.

Maybe @Brunneria has other insight, she has more experience with cgms.

Best wishes

 

[Brunneria]

Hi @62Rose

Those are very normal levels, but the key is what you were eating. Were you carbing, or not? Your evening meal rises are longer than mine and i am extremely low carb at the moment.

I’m no expert, but at night, i get the same little bumpy skips and dips. With the difference being that I often get a dip into the 3s at around 2.30am. The dip then triggers a liver dump. I think that is what happened for you at 3.30am on Saturday, and 5am Thursday. Did you feel rough at those times? I sometimes wake up with sweaty knees and a thumping heart. And maybe a nightmare.

I agree that your readings aren’t low - quite ‘normal’ in fact - except for a few sharp dips. Did you feel weird with the dips?

The jangly stuff on Tuesday evening may just have been the sensor settling in.

As @Lamont D says, it might be the change in bg rather than the level of bg that makes you feel rough. Or it could be something else...

Sorry your appt wasn’t more productive. It is very dispiriting, isn’t it?

This is when I just wish I understood more about the unbelievably interconnected relationships between the basic blood glucose hormones (insulin and its antagonist glucagon) and all the OTHER hormones, the stress ones, the sex ones and so on. I just don’t know enough to offer anything else. Sorry. Wish I could help more.

 

[62Rose]

I'm gonna try but I do not have the experience of a cgm!

Dated 30/1. Was this an OGTT?
You were given carbs @ 13.00, your glucose levels at that time were within normal levels. Though you had a very small spike, you soon went below normal levels, how low? By the chart, they give you carbs again @ 17.00. What for?
Your blood levels rose above normal levels rather quickly and more carbs were given what for?
They fluctuated below ten mmols for a couple of hours till resuming normal levels @ about 22.00 hours.

Graph two.
Dated 31/1
Your sleeping hours are in normal levels. Till you get what is called Dawn phenomenon. This is a liver dump giving you a kick start, it is common.
Until 20.00 everything seems normal. A little rise, but nowt else.

I can understand why your stand in endo said everything is normal, other than the small blood levels that dipped under, it is normal.
You may get more info when your usual endo is back.

I think, but I'm guessing is the reason why you feel rough is because of the fluctuations in bloods. Did you eat enough?
Do you think that the carbs given took you too high and because you have been very low carb, that the rise was higher than you have been for a while. This could also explain why you feel rough. If I go high enough, I feel like that. It is a hyper and that is why I avoid them!

Hope that helps.

Maybe @Brunneria has other insight, she has more experience with cgms.

Best wishes

Thanks for your interest. I’m sorry, to be clear, this was the week I wore a CGM to see what my sugars were doing, particularly at night. Trying to get to the bottom of my sleep disturbances. I hope you can see all the 8 days?

I have been low carb since June of last year, so as you say any carbs may have more of an effect. What I did notice is that I felt better when I was above 5 but yes when I went below the 4.4 lower limit she set up for the alarm I always had symptoms and often was sweating even when above 6 on a couple of occasions. Unfortunately I didn’t always log my carb intake on the monitor so can’t really interpret the results as well. I did record all that I ate in a food diary and my symptoms.
Are the spikes I had significant or minor? On the Tuesday when I started it I had a dreadful afternoon not being able to get my sugars up and having loads of symptoms, cold hands, sweats, brain fog and headache to mention a few, I had fasted that.morning for a Blood test and wonder if this is relevant, @Brunneria felt it might have been the monitor settling in but if my symptoms were so bad perhaps not?

I purposely tested out having some carbs at different points to see what the effect was and if that would make sleep better or worse but to be honest I can’t really tell what’s going on as my nights were just as disturbed as usual.

I’m hoping that I might get to see my consultant properly as I really am feeling unwell these days, or that the Gastro guy in May will be able to help me.

 

[62Rose]

Hi @62Rose

Those are very normal levels, but the key is what you were eating. Were you carbing, or not? Your evening meal rises are longer than mine and i am extremely low carb at the moment.

I’m no expert, but at night, i get the same little bumpy skips and dips. With the difference being that I often get a dip into the 3s at around 2.30am. The dip then triggers a liver dump. I think that is what happened for you at 3.30am on Saturday, and 5am Thursday. Did you feel rough at those times? I sometimes wake up with sweaty knees and a thumping heart. And maybe a nightmare.

I agree that your readings aren’t low - quite ‘normal’ in fact - except for a few sharp dips. Did you feel weird with the dips?

The jangly stuff on Tuesday evening may just have been the sensor settling in.

As @Lamont D says, it might be the change in bg rather than the level of bg that makes you feel rough. Or it could be something else...

Sorry your appt wasn’t more productive. It is very dispiriting, isn’t it?

This is when I just wish I understood more about the unbelievably interconnected relationships between the basic blood glucose hormones (insulin and its antagonist glucagon) and all the OTHER hormones, the stress ones, the sex ones and so on. I just don’t know enough to offer anything else. Sorry. Wish I could help more.

Thanks for you help. I am eating mostly low carb, no rice, potatoes (except a small soon full on Sunday lunch as a rest) white flour etc. I woke hungry on Saturday morning around 3 so ate peanut butter on low carb toast as an experiment, that will explain what those dips were about.
I can’t understand why I get small spikes around 9 in the morning on Sunday, Monday and last Tuesday. I ate bacon, egg and spinach on Sunday and Monday and bacon, egg and avocado on Tuesday ( I did have low carb toast and peanut butter earlier around 7.30 though that day).

I just feel they are such small changes but my symptoms were sweating and hot and not feeling right at all, as I seem to feel every morning these days

 

[Lamont D]

Hi @62Rose,
I see all the graphs now.
Other than the first one, they are normal, all within good levels.
Maybe just maybe that first graph was the reason for those symptoms.
Again, I'm not going to be much use, but when you are avoiding foods by going very low carb, or even going into ketosis, having ups and downs will take you out of the comfort zone, so a knock on effect of those blips of hypers and hypos, will give you the symptoms you describe. Even that small potato on a Sunday will kick you out of ketosis and raise your bloods higher than you wanted to.
You mentioned fasting, maybe you can't fast or not able to until you have had more time to adjust.
Bear in mind that being low carb and trying to stabilise your bloods, you may get a touch of carb flu, similar symptoms. This is why I hate coming out of ketosis because of the symptoms of the hyper at even something as low as 7mmols on my glucometer. It can take a few days to get back to what is normal and not getting the symptoms. Even if your blood levels are in normal range.
No good news, but awareness of your blood levels, and using your food diary, you will eventually join the dots, to see how to manage your blood levels.

The morning blips do sound like liver dumps or dawn phenomenon. I have no issues like that, I don't get it.

Best wishes