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Hypo Unawareness

mancview

Member
Messages
6
Location
Manchester
Type of diabetes
Type 2
Treatment type
Insulin
Hi, Hoping someone can help. I asked my practice nurse (who manages my diabetes with the support of a specialist GP) about the Free Style Libre - you'r probably thinking 'oh no not this again. After some searching and investigation she discovered that Manchester had approved them but there was a condition that they couldn't be prescribed by any GP. I had to be referred to the Manchester Diabetes Centre which I duly attended. After a lot of faffing with a grade? doctor and a consultant got an appointment with one of the DSN's. When I went she said that even if I did qualify (and she hadn't asked any questions at this point) Manchester were once again reviewing the policy for prescribing so no one was getting one. I explained that I have become hypo-unaware and she agreed it would help. My diabetes is currently classed as type 2. After several bouts of pancreatitis and a very close call being super hyo and hospitalised I was put on insulin straight away. She seem to think that because I don't produce any of my own insulin (or digestive enzymes) I could be reclassified as type 1 for the purposes of treatment/care. Now to my question; she said that whilst the Libre would be helpful it may be best having an alarming sensor. Can anyone explain what these are please.
 
@mancview . I suspect your DSN is suggesting a CGM ( continuous glucose monitor).
A libre in its bog standard form needs to have the reader flashed over the sensor to give a reading. If you don't flash/ scan then you get no information. Whilst asleep the libre wouldn't be able to tell you anything regarding your bs levels.
A CGM more pricier but the sensor continually sends information to a receiver. The receiver records and logs the data. The receiver as the capability to sound an audible alarm once certain levels are reached whether they be low or high. Whilst asleep, if you was to drop below the bs setting you had set an alarm would be activated to warn you of an impending low. The alarm continues until you take action to correct the warning.
It's not all bad news with the libre though. Some clever guys have pimped the libre to work as a CGM. It needs after market add ons but seems a great device when set up. I'll tag @Scott-C he is the go to guy for this kit
 
mancview said:
Now to my question; she said that whilst the Libre would be helpful it may be best having an alarming sensor. Can anyone explain what these are please.
Click to expand...

Hi, mancview, can I just say The Alarming Sensors would be an ideal name for a post-punk band! Any thoughts on this @Jaylee as our resident muso!?!

Alarming sensors are little plastic devices stuck on your arm/stomach. They've got a small filament inside your skin measuring glucose. There's a transmitter pinging the result every 5 mins to your phone, so you can see a graph showing where your levels are going and it'll ring if you go too high or low.

There's a few companies doing them:

Dexcom: https://www.dexcom.com/en-GB

Medtronic: http://professional.medtronicdiabetes.com/personal-cgm

Medtrum: http://www.medtrum.com/indexMobile.html#Page3

The problem is the cost and persuading your docs to fund them. Dexcom sensors officially last for a week and cost 50 quid. Unofficially, everyone knows that they can be restarted and many people get 2, 3 weeks or more out of them. But from the NHS point of view, they last a week so they're looking at it as 200 per month.

If your dsn is onside for you being funded for dexcom, go for that.

If you get libre, as @therower says, it won't give you alerts like dexcom but it's still pretty useful for tracking levels and catching day time lows before they happen. It's also very easy to turn it into "proper" cgm with alerts by putting a transmitter on top from www.ambrosiasys.com or https://www.miaomiao.cool . I've been using the blucon transmitter from ambrosia for a year now, very happy with it, has saved me from a few bad night hypos. Haven't tried miaomiao yet, it's the new kid on the block.

Your dsn seems to be onside. Getting libre funded is probably going to be easier than dexcom because of the pricing (libre 35 for 2 weeks, dexcom 50 for 1 week) so if you end up with libre, fork out about 100 quid for a blucon transmitter and it'll make it the same as dexcom.

When you're talking to your dsn about this stuff, the chances are they will have never heard about transmitters for libre. Both blucon and miaomiao are CE marked for sale in Europe, but I still had a dietician ask me whether it was 'legal'!
 

Ahh I did not know this about the libre. Although it has helped me beat night time lows I am still dropping at random times of the day. So this add on may be useful for me.

Does the transmitter need to be changed every time you change your libre sensor?
 
CranberryIce said:
Does the transmitter need to be changed every time you change your libre sensor?
Click to expand...

No, it's a one-off purchase. Mine cost me about 100 quid. Buy the transmitter, change the CR2032 battery which powers it for a pound or so every couple of weeks when you change sensor, and it'll be good to go. I've been using the same transmitter for about a year now, and it's not showing any signs of packing in.

It's not waterproof, so I need to take it off for showers, but I just use cheap 17p Molnlckye Mepore plasters from Boots for that. Others use armbands.

They've just brought out in the last few weeks a waterproof version, a bit pricier at $165, but the jury is still out on how waterproof it is.

The guy behind it, Piyush Gupta, used to work for Abbott, who make libre, so I reckon he knows a bit about it.

Their inhouse app, linkblucon, is very basic, so most of us use xDrip+ with it instead which is much more sophisticated. You can get the apk for your phone here:
https://github.com/NightscoutFoundation/xDrip/releases

Really doesn't work that well with Samsungs, though, their bluetooth implementation is just weird!

It's quite small - heightwise it's about the same as 2 sensors on top of each other and a couple of mm wider. I don't notice it.

And you get groovy graphs! Here's one of it waking me up at 4am as I was getting near 4. There's dozens of other things it's good for too.

 

Thank you so much! I will definitely be looking into this.

I have been unable to use the LibreLink app as my IPhone (6s) does not support the app & its far to costly for me to change/upgrade my handset- so hoping the xDrip+ is compatible with my phone.

Love the graph! I always assumed these graphs were from pump users so never paid attention to them.

On the LibreReader- I record insulin/food/exercise etc. Will that show up on the app? Do I still have to enter that information through the reader? Or can I do it onto the app?

and just to clarify I take it the xDrip+ doesn’t allow you to use your phone as a reader/scanner like the LibreLink?

(Sorry for my millions of questions)
 
Hi, @CranberryIce , xDrip+ only works on android phones, so it won't run on ios.

However, there's a similar app, Spike, for ios4+ and I've seen screenshots showing it having blucon as a data source option.

https://spike-app.com

I've not used it myself but there's been some decent reviews of it. The developers move in the same circles and a guy who is involved with it was building his own ios version of xdrip+, so they'll have a lot of common features.

Here's an interview with the developer.

https://www.deebee.it/?p=14531&lang=en

xdrip+ has certainly got buttons which allow entering food and bolus, but not exercise, although if you've got a smartwatch with a stepcounter, it'll show up exercise on the timeline as a series of green blobs. You can attach notes as well. I assume spike will have too.

I think @Mel dCP has got spike, but not yet got blucon. Mel, can you throw some light on what spike's got for recording food/bolus and whether it's got predictive simulation?

Don't know whether spike does this but xdrip deals with carbs/bolus entries much better than the libre reader. You can edit things like your own personal carb ratios, and switch on a feature called predictive simulations, so that when you enter carbs/bolus, it'll map out on the graph some purple dots predicting where that might take you, see pic below.

It's surprisingly accurate, takes a while to read it properly, but it's useful when I'm in two minds about whether a bolus should be, say, 6 or 8, just fire them in and see what the graph looks like for each.

In the pic, you can see I prebolused 7u about 30 mins before a 75g meal, then there's a downward dip and then starts to curve up when I took the screenshot at 12:47. I can then see the prediction, the purple dots, reckoning it'll steady out before tracking up to 8, so when I see something like that, I'd be saying, ok, keep an eye on that, the prediction will rejig as it gets more info each 5 mins, so if I then see the blue dots tracking up more sharply and the prediction going above 8, I'd be thinking about whether a small 2u correction would be needed. I'd be guided a bit by the green line which shows iob which makes it a little easier to see when peak action is due.

I've never had librelink and xdrip running on the same phone, so don't know whether you could use both together nor how it would with spike. I'd guess that because blucon and spike are using bluetooth and librelink uses nfc, they might work on the dame phone. I can still use the reader if I want to.

 
I can’t see how to enter food and carbs precisely, because there’s nothing connected at present - but there’s things to press for calibration, bolus, carbs, meal, notes and treatments (meds?). So it looks like you can put in more detail than you can on the LibreLink app or the scanner. Probably similar to mySugr in detail level.

In other news, I now can’t decide between MiaoMiao and Bluecon
 
I like the waterproofness, lower profile and rechargeability of the MM, apparently the connection is more reliable. However, I like the fact that the profile of the NR is the same as the sensor. Gah.
 
Mel dCP said:
Yeah, I’m vascillating wildly between the two! Do you know much about MM?
Click to expand...

Yeah, the waterproof bit is attractive, although I see blucon is now offering a waterproof version as well. I wonder about the internal battery.

I've had a few phones where, after a while, the battery seems to lose the ability to hold charge if it's been totally discharged too much, so I wonder if that will become an issue after a while. Although that was mainly phones from a few years back, so maybe battery technology has moved on.

At the link below, the mm developers (posters birdfly and leoleezoom) contact the spike and xdrip developers (posters miguel kennedy, johan degraeve, jamorham and others) asking if they can be tweaked to work with mm.

There's then several months of development discussions. The coding is was above me, I don't pretend to understand any of it, but there was a couple of things I took from it.

First, it's still in development, and while they've certainly got it working in certain circumstances, I suppose it's one thing it working under "lab" conditions, another to have it working reliably across a range of phones. It's such a long thread I can't find the post now, but I recall one of the xdrip developers telling birdfly that there was a fairly fundamental issue which mm needed to sort or they would be swamped with user queries/complaints once it went live.

Second, there was mention of them using cheap Chinese "clones", presumably some sort of circuit board. Again, I don't pretend to understand the technology, but it came across as a problem.

Third, there was a bit talking about the importance of the "air gap", presumably the gap between the sensor and mm. It seemed that even a small change could glitch it. Again, fine in a lab, but in the real world, will that be a problem? Does it lose connection if you're flexing your arm too much and the air gap gets too big - I don't know.

I recall when blucon first came out, before xdrip was tweaked to use it, their inhouse app went through a series of revisions. I suspect miaomiao will be the same. I'll probably buy one eventually out of curiousity but might a while until it's settled down. Teething problems seem to be inevitable with this sort of thing, and as blucon has been around for longer most of them have been ironed out, whereas mm is just starting out so there might be surprises ahead.

https://gitter.im/miaomiaoSDK/Lobby
 
I would like to shift the question response back to the unawareness aspect.
At 45 years mark on insulin and despite 6 to 8 injections per day ( Levemir x 2, Novorapid x 4 to 6) I was having lots of ups and downs. Night hypos were becoming more frequent and there is nothing more frightening than not being able to know when I was hypo because I was asleep and my hypo awareness day and night was diminishing. HBA1Cs were coming in around the 60 plus mark.
It was by going on an insulin pump that my blood sugars improved, as did my HBA1Cs ( now regularly around the 46 mark) AND my hypo awareness improved. Now at 51 year mark and still needing to improve !!
My doctor said that my brain had become used to the high sugars and my hypo awareness had been blunted as a consequence.
I look forward to the Freestyle Libre app arriving in Oz on Wednesday !! Even without the alarm it will give my poor fingers a rest. They need it after 37 years. ( home based glucose meters only became available in OZ from 1980)
 
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