Reactive Hypoglycaemia and glucose monitor

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NatS

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Hello everyone,

First time of posting but I've been reading lots of information on here for quite some time.

I'm after some advice/opinions on monitoring glucose levels with reactive hypoglyaemia.

Before the pandemic I saw an endo who I thought was going to be amazing. I'd been experiencing symptoms of low blood sugar and decided to start checking. I was going low and my GP referred me very easily. The endo was equally as great, gave me an up to date device for finger pricks, arrange a glucose tolerance test and then wanted to do a 3 day fast to monitor what happened. The fast was never arranged and then the pandemic hit.

During the glucose tolerance test my glucose levels went to 2.4 on the ward. After the test they fed me and before I had even got to a cafe 15 minutes down the road I was back down to 2.6. The endo suspects reactive hypo, has checked my hormone levels and referred me to a dietician. I have asked him for an actual diagnosis but won't give me one.

I have asked for the freestyle libre to help me monitor a little better. I know this is mainly just prescribed to type 1s but I asked based on a few factors.

1 - I work in a lab using biological material and chemicals so finger pricks aren't ideal - i also keep bleeding for a while afterwards and I can't do these in the lab.
2 - I don't notice when I am going low. I am usually around 3.4 before I pick up on any symtpoms.
3 - When I exercise (weights, indoor climbing) my levels plummet very quickly. Don't get the same reaction with walking/running. But to keep monitoring in the gym or at the wall means I then have to stop what I am doing for about 10 minutes otherwise I bleed on the equipment, which really is a bit gross.

I've explained all this to the endo and he wrote back to me say I can't have the freestyle libre, even on a short trial so I can be more aware of when I am going low, because (and he wrote it like this "IT IS FOR TYPE ONE DIABETICS ONLY".

Is there anyone on here with reactive hypoglyaemia who has the freestyle libre?

The endo also put in the letter that I should even need to be monitoring. I completely disagree.

Apologies for the lengthy post! Other than asking for a second opinion I'm not sure what to do. Can my GP prescribe the freestyle libre? The lady I originaly spoke to at my surgery is still there so I could go back to her.

Nat
 
Could you afford to self fund the Libre ? You buy direct from their website.
 
NatS said:
Hello everyone,

First time of posting but I've been reading lots of information on here for quite some time.

I'm after some advice/opinions on monitoring glucose levels with reactive hypoglyaemia.

Before the pandemic I saw an endo who I thought was going to be amazing. I'd been experiencing symptoms of low blood sugar and decided to start checking. I was going low and my GP referred me very easily. The endo was equally as great, gave me an up to date device for finger pricks, arrange a glucose tolerance test and then wanted to do a 3 day fast to monitor what happened. The fast was never arranged and then the pandemic hit.

During the glucose tolerance test my glucose levels went to 2.4 on the ward. After the test they fed me and before I had even got to a cafe 15 minutes down the road I was back down to 2.6. The endo suspects reactive hypo, has checked my hormone levels and referred me to a dietician. I have asked him for an actual diagnosis but won't give me one.

I have asked for the freestyle libre to help me monitor a little better. I know this is mainly just prescribed to type 1s but I asked based on a few factors.

1 - I work in a lab using biological material and chemicals so finger pricks aren't ideal - i also keep bleeding for a while afterwards and I can't do these in the lab.
2 - I don't notice when I am going low. I am usually around 3.4 before I pick up on any symtpoms.
3 - When I exercise (weights, indoor climbing) my levels plummet very quickly. Don't get the same reaction with walking/running. But to keep monitoring in the gym or at the wall means I then have to stop what I am doing for about 10 minutes otherwise I bleed on the equipment, which really is a bit gross.

I've explained all this to the endo and he wrote back to me say I can't have the freestyle libre, even on a short trial so I can be more aware of when I am going low, because (and he wrote it like this "IT IS FOR TYPE ONE DIABETICS ONLY".

Is there anyone on here with reactive hypoglyaemia who has the freestyle libre?

The endo also put in the letter that I should even need to be monitoring. I completely disagree.

Apologies for the lengthy post! Other than asking for a second opinion I'm not sure what to do. Can my GP prescribe the freestyle libre? The lady I originaly spoke to at my surgery is still there so I could go back to her.

Nat
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I suspect if you are bleeding excessively after your finger prick you are stabbing too deeply, in general monitors only need 5-10 microlitres of blood so once applied to the strip it should not continue to bleed. I know if I needed to I could get 500-700 microlitres from one finger prick (but then I was known as the vampire when I was in the lab at work)

Can't really answer your other questions but I would have though monitoring would be a good idea.
I hope you get a better diagnosis soon.
I think there are some other people here who have what you suspect you have so hopefully they will be able to offer some advice.
 
@NatS You could try the free trial as @helli suggests. I have Type 1 diabetes and I can’t get the Libre because my local authority has purposely made it almost impossible, so please don’t think they’re handing them out to everyone freely.

What reason did the endo give for you not needing to monitor your blood sugar? Are you having any follow-up with this endo? Do you have a copy of the letter the endo sent your GP after they’d seen you? Did you get any dietary advice?
 
Hello All,

Thanks for the replies.

Unfortunately I can't afford to self fund as I've just quite my job to become a student again. Maybe once I've worked out how much spare cash I have each month I might be able to.
I have just got the free trial and hoping my pal with type one might come over later to help me attach it. I'm hoping I get some useful data to show the endo.

He said I don't need to monitor because nothing serious should happen when I go low. I get it, my levels will go back up eventually but what about in the meantime.

I do have the original letter and the follow up after the tolerance test and 3x fasted glucose tests which he did at the same time as checking my hormone levels. I'll dig them out this weekend.

Nat
 
I don’t think you’d have much success getting the libre prescribed, they do seem to stick to the type 1 only rule. I’m T2 on multiple injections and have to self fund. What finger pricker are you using? I bleed a lot and find the accu chek fast clix on setting 0.5 perfect for being gentle and less bloody
 
Lucyr said:
I don’t think you’d have much success getting the libre prescribed, they do seem to stick to the type 1 only rule. I’m T2 on multiple injections and have to self fund. What finger pricker are you using? I bleed a lot and find the accu chek fast clix on setting 0.5 perfect for being gentle and less bloody
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Please remember as @Inka mentioned, it is not everyone with Type 1 that gets the Libre on prescription. For me, it was down to money. In order to test as often as I needed for driving and exercise as well as meals, Libre was cheaper than finger pricking. And I only test at those times because I need to inject very dangerous drug in order to keep myself alive.
Still the target is only 20% of people with Type 1 get prescribed Libre in England.

That said, I don’t understand why people with type 2 who need insulin and testing as often, would not also qualify for Libre on the grounds it saves the NHS money.
 
It’s not just about the money. It’s about the utter pigheadedness of some people. It would actually be cheaper for them to give me the Libre but they’re obsessed with limiting access to it. I think I’m starting to agree with the idea we’re all given a basic funding amount and can choose what to spend that on per year. I also think we should get DLA below a certain income - that would pay for the Libre. The way it’s prescribed across the country is very uneven and very unfair IMO.

@NatS I found this dietary advice for someone in a similar position a while back. I hope it gives you some ideas:

https://www.nnuh.nhs.uk/publication/download/healthy-eating-for-reactive-hypoglycaemia-v5/

.
 
My partner has RH - I'm afraid he wasn't even given a standard finger pricker when he was diagnosed, though that was many years before the Libre existed. He was just told to carry fruit around with him at all times (which is actually quite good advice, though I'd go for dried fruit or fruit juice as it gets your blood sugar up faster).

There's a good article about RH on Wikipedia here - https://en.wikipedia.org/wiki/Reactive_hypoglycemia - the treatment advice is pretty much what R does, particularly the bits about having frequent small meals and eating plenty of fibre. He very rarely has hypos now, so it is possible to manage RH just by making changes to your diet and the way you eat.

I don't think you will have any luck getting the Libre, but I'd definitely keep monitoring if you are not always having hypo symptoms when you are low, because that could be harmful, even though you're not on insulin. I'd also go back to your GP and ask for further help, because you need a definite diagnosis, and it may be that it's not RH you have (do you get very tired and have high blood sugar after eating carb-heavy meals? - because that should be happening before the hypos if you have RH). There are other conditions which cause hypos, such as Addison's Disease (@Pumper_Sue would be able to give you more information about that, if you haven't already been tested for it).
 
Inka said:
@NatS You could try the free trial as @helli suggests. I have Type 1 diabetes and I can’t get the Libre because my local authority has purposely made it almost impossible, so please don’t think they’re handing them out to everyone freely.

What reason did the endo give for you not needing to monitor your blood sugar? Are you having any follow-up with this endo? Do you have a copy of the letter the endo sent your GP after they’d seen you? Did you get any dietary advice?
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Sorry for the delay in replying.

Only reason given is that nothing serious would happen.

I'm currently at 3.1 and have no symptoms at all. I left work today and just as I was getting in the car I got a low glucose alarm.

I have all the letters he has sent. The one after the test said my symptoms are confusing because my results are not typical of reactive hypoglycaemia.
 
TheClockworkDodo said:
My partner has RH - I'm afraid he wasn't even given a standard finger pricker when he was diagnosed, though that was many years before the Libre existed. He was just told to carry fruit around with him at all times (which is actually quite good advice, though I'd go for dried fruit or fruit juice as it gets your blood sugar up faster).

There's a good article about RH on Wikipedia here - https://en.wikipedia.org/wiki/Reactive_hypoglycemia - the treatment advice is pretty much what R does, particularly the bits about having frequent small meals and eating plenty of fibre. He very rarely has hypos now, so it is possible to manage RH just by making changes to your diet and the way you eat.

I don't think you will have any luck getting the Libre, but I'd definitely keep monitoring if you are not always having hypo symptoms when you are low, because that could be harmful, even though you're not on insulin. I'd also go back to your GP and ask for further help, because you need a definite diagnosis, and it may be that it's not RH you have (do you get very tired and have high blood sugar after eating carb-heavy meals? - because that should be happening before the hypos if you have RH). There are other conditions which cause hypos, such as Addison's Disease (@Pumper_Sue would be able to give you more information about that, if you haven't already been tested for it).
Click to expand...
Thanks for the info. I do try to carry food just in case.

Not sure about addinsons. I'd say not if I'm not aware of it.

Currently got the free trial libre. Not really going that high. The highest I have been is 10mmol very briefly. I seem to sit around 4/4.5. I have been going low overnight frequently.

I want to exercise and eat lots of carbs to see what happens.
 
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NatS said:
I have been going low overnight frequently.
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Are you aware that Libre reads low if you lie on it. That may be why it is showing you going low overnight as Reactive Glycaemia would be unlikely to do that through the night. Also the Libre can read significantly lower than a finger prick at low levels and higher at high levels. Did you do a finger prick to test your BG when it showed you were low today. My Libre sometimes says I am in the mid 3s and my BG is actually in the 5s and that is during the day when I am not lying on it or causing a compression low. They are by no means 100% accurate and should be used as a guide rather than absolute figures and a finger prick test done to confirm any low or high readings before treating.
Apologies if you already know this, but with you just being on the free trial and not having much experience of it I thought you might not know these things. Don't get me wrong, I am not knocking the system, which is a game changer for those of us on insulin but you can't always just accept the readings it gives you at face value.
It is also possible for fit healthy, non diabetic people to drop below 4 during the deepest points in their sleep, so dropping below 4 during the night is not particularly an indication of anything amiss, unless you are dropping below 3 and a finger prick confirms that.
 
Just to correct one thing @rebrascora said (I agree with everything else!) - actually you can go low overnight with RH - R always keeps a biscuit beside the bed just in case - but eating something fatty last thing at night (eg a yogurt) can help with that. You would be getting highs as well as lows with RH though, and getting very sleepy after carb-heavy meals, so I can understand why they're saying your symptoms aren't typical of RH. I really would be going back to my GP if I were you and asking for further tests, given you know your blood sugar level has been in the 2s in the hospital (when it was presumably measured with a finger-prick test, which makes it more likely it really was that low).
 
I didn't know that about sleeping on it so thanks. It's on the opposite side to my sleeping side but definitely worth bearing in mind. The alarms are generally waking me up so I should be able to tell. Not done any finger pricks so will start trying to do this to confirm. All useful info!

The 2s were measured by the lab from blood taken from my arm and one was a finger prick.

This is all fairly new to me so thanks for all the hints and tips. I got the free trial so I could look for patterns/triggers so it's really good to learn new stuff to help me better do this.
 
Perhaps it’s something other than RH then? An obvious statement but have they done any further tests yet? What would a typical day’s food look like for you? If you’re sitting around 4/4.5 then that’s pretty normal. It’s the 2s that aren’t. Have you got any 2s since?
 
Breakfast toast butter
Snack banana or babybel
Lunch usually soup or crumpets
Snack chocolate
Tea random but a mix of protein and veggies sometimes a pudding.
Drink tea in between.

They have done a 9am cortisol test. No scans.

I don't finger prick as much as I should due to work so not been tracking properly so don't know the true extent of highs/lows.
 
It’s good news that they’ve done a cortisol test @NatS Ruling out other conditions hopefully should get you closer to an answer. To my mind, it’s the not knowing that can add to the stress.

Have you experimented with different breakfasts and lunches? I’m wondering if what you wrote above is your normal diet or if it’s an amended one you’ve adopted to try to help? I want to comment but I don’t want you to think I’m being rude or critical, so please take this as suggestions not in any way digs at your diet or anything, but it seems quite low in some elements eg protein, and largely based on carbs? I know I have diabetes anyway so am hardly a normal comparison but I find breakfasts and lunches that are mainly carbs don’t work as well as others in keeping my blood sugar steady. Could you have say an egg or two with your toast or yoghurt and berries, etc? Cheese, fish or meat with your lunch, etc?
 
Don't worry I'll not take anything as a dig. All insights are very welcome. The endo hasn't been much help and I don't have the dietician appointment until November.

I'm trying to balance calories and volume of food. I'm only 5ft so don't have a lot of daily cals. I sure I can add in more protein. I forgot but I do sometimes have a protein yogurt mid morning. I usually hungrier in the evenings so have more food after work.
 
I’m not much above 5ft either 🙂 I don’t think you need to worry about calories. I’d stop measuring them personally. I think it’s more important to eat well. Obviously we all have days when we’re in a rush but I think you’d maybe feel better if you just ate more, and more protein too. Worth a try anyway. I’m far from perfect and do sometimes go for the easy option because it’s hard trying to fit everything in, but I generally try to concentrate on eating well not limiting calories. That is, getting lots of nutrition in there - enough protein, enough carbs, enough healthy fats, plenty of veg and some fruit.
 
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