Hypo Awareness – AWOL

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    • #9968
      Anonymous
      Inactive

      Hypo warning signs last seen 7 years ago. Description – shaking, sweating, random burbling. These signs had accompanied me for 26 years of insulin reliance, totally reliable, turning up without question, any time, anywhere. I didn’t give them a second thought, never thanked them for showing up and giving me a swift nudge towards my favoured orange Lucozade.Then one day nothing, concious to unconcious, not so much as a tremble. I shrugged it off, they’d be back, why would they leave?

      Months turned to years and my daily search for my lost symptoms became more frantic. Living without them was seriously scary. Finger blood glucose tests give you just a snapshot but for the other 23 plus hours in a day you really are all at sea. I didn’t want to give up on my old warning signs but eventually I had to look elsewhere for a bit of reassurance.

      I’m putting my trust in a continuous glucose monitor to work with my existing pump and it can’t come soon enough.The joy I will get from having a display showing me where my blood glucose is, where its going, where its been and alarms to warn me when I’m heading way off target.

      So make sure you give your hypo warning signs an occasional pat on the back and thank them kindly for showing up in good time even if it is 3 am. I really hope yours are more dedicated than mine!

    • #12534
      Alison
      Keymaster

      @Megs Welcome to ShootUp! That must be seriously terrifying to suddenly lose all your signs. Mine have changed over the years but thankfully they’re still there (touch wood, fingers crossed etc).

      A CGM sounds like a great idea. I find mine tends to lag behind a bit when I’m low – if I’m dropping quickly it’ll say I’m a 4 but I’m really a 2 – but if I had no hypo warnings I’d just have my low alarm set to around 4.5 so it would kick in. And of course the trends will be really useful so you can see when you’re dropping. Are you getting one soon?

    • #12535
      Anonymous
      Inactive

      Yes, thank goodness, 2 weeks to go, just 14 days, can’t work out the hours. I’m going to be shown how it all works. I’ve been told that the alarm for low blood sugar would have to be set a bit higher due to the time lag between interstitial and blood glucose. A short time lag compared to zero warnings should be a piece of cake! Thanks for the warm welcome on your site.

    • #12536
      Alison
      Keymaster

      Just to manage your expectations, I’m passionately in love with my CGM, but I could happily pitch the bloody thing out the window at times. You can see what I think are the pros and cons of it here – https://www.shootuporputup.co.uk/2009/04/to-cgms-or-not-to-cgms/

      It has it’s foibles so when you get it, if there’s anything you’re struggling with, it’s worth asking on here (although there aren’t many of us CGM types on here, those who are, are very happy to share what we know) or a brilliant site in Canada which has a lot of CGM users on it – http://www.insulinpumpforums.com . As ever, it’s the hints and tips from people who use it every day that are most useful. Overall though, it’s a fantastic bit of kit.

    • #12543
      Annette A
      Participant

      @megs – what CGM are you getting? I am beginning to have minor problems with hypo unawareness – my signs are now very subtle, and if I dont notice them straight away, I miss them, and they disappear (but the hypo doesnt). Luckily, I’ve always tested and discovered I’m low before I get so low as to pass out, but I am getting concerned – it doesnt happen all the time, but what if it starts to do so? Or what if it starts doing so in the middle of the night? I’m going to bring it up at my next clinic appt, but I know my DSN isnt keen on them (she says ‘you’d have to wear another sensor all the time.’ I say ‘So what?’) so I’m unlikely to get any NHS help at the moment (until I start keeling over without notice).
      Are you self funding or NHS? Let us know how it goes!

    • #12544
      Alison
      Keymaster

      @annette I think the key part of your DSN’s statement is “you’d have to wear another sensor all the time”. As you’re the one wearing the sensor, it’s really not something for her to be worrying about so perhaps she could start focussing on the medical benefits rather than things that are really not her problem :-)

    • #12545
      Anonymous
      Inactive

      I know, I must keep my expectations under control ( I haven’t stopped smiling since finding out I had funding for a cgm). I’m sure there will be many new problems to manage as well as finding new bits of me to put the extra sensors in. Do they have to be on the same side of your body as the pump or can they relay information through or round me? I’m getting the Paradigm Veo and I’m exceedingly grateful to have been granted NHS funding. I need to put my reasonable, sensible head back on and remember how daunting the first few weeks with a pump were.

    • #12546
      Alison
      Keymaster

      It’s no where near as hard as starting the pump – I couldn’t stop looking at it and smiling for the first few days! – it’s just a bit quirky so you need to get used to it. I’m excited for you now!

      It doesn’t transmit very well through your body – I tend to wear my sensor on my back, and have my pump clipped to my waistband at the side or in the side of my bra and that works. If I have the sensor in my back and wear my pump in the middle of my bra at the front it loses signal, it doesn’t seem to be able to get through my body. Wearing the sensor on the left of my stomach and having the pump on the right is no problem (unless you’re very pregnant when someone was telling me it doesn’t get through/round the bump very well!).

    • #12547
      lizz
      Participant

      Crikey, I certainly wouldn’t want my foetus to be having a sensor signal going through it all the time… what a worrying idea. Not before it’s proven that it’s harmless anyway.

      I am about to be fitted up tomorrow with CGM to see what my BSs are doing day and night with a view to changing my bolus doses. I seem to have a phobia about not eating, just can’t get myself to do fasting blood sugars…

    • #12550
      Alison
      Keymaster

      It wouldn’t be my first choice of things to do with a foetus either, but it’s completely academic whether it’s safe or not as the signal won’t pass through the body so the answer is to wear the pump and the sensor with no significant body mass inbetween.

    • #12560
      lizz
      Participant

      Might not go all the way through, but might get half way through – where’s the proof it doesn’t?

      I’m thinking about mobile phone signals here, which don’t penetrate more than a few centimeters through our brain, but which pass completely through the skull and brain and out the other side of babies.

    • #12562
      Alison
      Keymaster

      @liz No proof that I’m aware of, but as with everything, we’re just on that tightrope of risk and I guess most ladies with a bump who use CGM take the approach of balancing the proven and significant increased of risk of complications to the baby caused by high blood sugar, against the potential yet unproven risk of CGM. If it were me (which it isn’t, I only mentioned it as I’d heard it several times recently from different sources so thought it might be useful to share) I’d go with the CGM, but that’s why individual treatment for individual patients is so important, so we can all weight up the pros and cons of any treatment as best we can and decide what’s right for us.

    • #12567
      lizz
      Participant

      True. I was very lucky in that although I am brittle all the time, while pregnant, I wasn’t. My control was ridiculously easy, although I was just as careful of course. It made me want to have ten children and be pregnant all the time, but sadly, since we needed IVF, that wasn’t possible.

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