hypo ill health

Hello everyone I've not been here for a while I have been quite poorly recently I'm not sure if people remember but I was having a lot of of retinal bleeds I have now have 7 and waiting to be transferred to another hospital to have laser treatment for a general anaesthetic as I cannot see much at all all but I'm writing this post on two reasons the first one will my eyes ever get back to normal I am no longer able to work as I cannot see I have just won my Pip appeal but I'm worried this will be permanent the second thing I wanted to tell everyone I had a very bad hypo about 3 weeks ago where I went to bed and my blood sugar was 8.5 which to me is fine I don't really remember what happened but I know I had a severe hypo and I woke up with a paramedic in my bedroom my mum and dad and sister have told me that I was unconscious and foaming at the mouth as you can imagine that it was quite scary but he had to try 4 times to get a cannula in and my sister was holding the glucose bag I have no hypo awareness but I do wear a Libra and used in Meow Meow now what happened was my phone has fallen to the floor and my pillow is well on top of it so I didn't hear it I have recently found that the Libre sticker is reacting to my skin I have tried to see about getting the dexcom but I have been told in my area it will be April next year I have rang the dexcom people and they have told me me it is £149 a month and they take that out every 3 months now I can understand if it was that to get the machine and everything but it just seems a bit speak to me can anyone help me me is that right that is £150 a month I know it's a great bit of kit but like you're here we didn't ask for this and I think it's crazy we have to pay this amount sorry for the long message any feedback will be appreciated thank you x

Hello no I have done a dafne course but I suffer with the dawn phenomenon but I am under a huge amount of stress at the moment due to ill health my blood sugar with 8.5 which going to bed is fine for me I did have have one unit still on board the problem is the basal is fine at night one week but then few days later it is either not enough or too much I have spoke to my diabetes team I'm at the end of what to do now in the day my blood sugars are fine I'm not really struggling to control them it's just overnight with this dawn effect thank you you for your your advice

helensaramay said:

@misspinky1984 I am very sorry to read about your diabetes woes.
I too can't comment much on your eye situation. Have you asked the team who are treating you?

Regarding Libre/Dexcom, I believe Dexcom would need a receiver (e.g. a phone) so I am not sure how this would help.
One thought I have is whether a smart watch would help. A number of people direct their Miao Miao readings and alerts to their watch. This means it will be you wrist that beeps and vibrates which should wake you up regardless how many pillows are pulled on your phone.

You severe hypo sounds very scary. Have you worked out what happened? Understanding what caused it can help you avoid it in the future. A fall from 8.5 to major hypo for no reason is unlikely. Did you have a lot of active bolus insulin when you went to bed? Is your basal dose too high? Going to bed at 8.5 is typically high. If you need to do this to avoid hypos suggests too much bolus at night. Had you been exercising? Or drinking? Both impact your bg for many hours later.

It sounds as if you are struggling to manage your bg. Have you asked your diabetes team for help? For example, you may benefit from a DAFNE course.
Some people have found their diabetes easier to manage on a low carb diet. This would mean less insulin so smaller mistakes.
And closer diabetes management may help reduce the risk of more retinal bleeds.

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I agree there's no price on your health but obviously did you do other situation I'm not working at the moment and also in the process of moving house I'm not sure what to do really so with the dexcom it's £150 for the starter pack and then when each month is £150 is that correct

MeiChanski said:

Hello, I'm very sorry about your situation. I cannot comment on your eye situation but yes Dexcom is £150 for their subscription service I think for sensors etc which is similar to your libre and miaomiao combo, it alerts when you run high or low. I don't know if you've used any skin barrier products like Skintac or something for your skin reaction. I know Libre 2 is coming out soon, I don't know when but it'll alert when you run low or high too. I know a while back you got a pump, I don't know if it's worth you changing to another pump for a closed loop system like Medtronic 670G, I know Tandem and Dexcom is another one. The closed loop system works with a CGM and suspends the pump when they predict a low blood glucose. I don't know whether that was a choice for you when you picked out your pump. Have you spoken to your team about a closed loop system?
If I had to pick, you can't put a price on health, I know Dexcom is expensive but it has helped so many people. I'll tag @Juicyj - She uses a dexcom and she is self funding for it as well.

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I didn't know I could get a closed loop system and I thought you couldn't change your pump every 4 years not sure what to do at the moment I do have a furnace in the day I didn't rephrase that well

misspinky1984 said:

I agree there's no price on your health but obviously did you do other situation I'm not working at the moment and also in the process of moving house I'm not sure what to do really so with the dexcom it's £150 for the starter pack and then when each month is £150 is that correct

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Hello no I'm not really sure why this happened with my typo my blood sugar was 8.5 which to me is fine I don't want to go to bed below 7 or above 9 bit particular with my blood sugars at night I didn't have anything to eat before I went to bed but I don't always I do suffer if the obviously that was when your blood sugars rise happened to have to do do the basal rate quite regular I have done the dafne course but not for rhe pump I have spoke to my dsn regarding doing this but there isn't an opening until April next year I've also spoke to them regarding the hypos they are in in contact with me I see my diabetic nurses maybe a 9 times a year with all the appointments

Juicyj said:

Hello @misspinky1984 sorry to hear about your hypo event, how incredibly frightening for you and your family. As Helen has mentioned it’s important to understand why there was such a drop, do you have any idea why this happened ?

The G6 costs £159 a month, they last 10 days each but can be extended by a further 10 days, the accuracy is pretty good and they can be linked to your phone, I use an iPhone but also now use a Garmin watch so if my phone is in my bag then alerts go to my watch too so I have 2 means of being alerted. You can set the alerts to warn you so if you have poor hypo awareness then setting it at 5 mmol/l could be an idea, remember that BG levels can drop rapidly and as there’s a lag you need to ensure your bottom level gives you enough chance to verify on a BG meter and take action. You can calibrate the G6 but it’s not essential, however do remember that any CGM system is infallible and must be checked against a meter to ensure complete accuracy. I do think your quality of life could be improved greatly by using one, can you speak to your DSN too to see if you can get support ? Also wise to discuss your recent hypo event too as they may want to monitor you, also have you done the DAFNE course yet ?

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I didn't rephrase very well I have hypo awareness in the day but at night I don't I don't wake up for a hypo I have started setting my alarm in checking at the middle of the night but now I'm so tired as you can imagine I'm not working at the moment due to the eye situation and and I also had my shoulder

EllieM said:

OK, I can't comment on your eye situation other than I know that eye treatment is improving all the time, very few diabetics go blind now, and avoiding sudden changes in blood sugar is supposed to help....

As regards the libre and hypos
1) Are you sure your hypo awareness is permanently gone? I've had periods of loss of hypo awareness in the past, and so far it's always come back if I keep my blood sugar higher (I aim for 6 - 12) and avoid hypos for a while (weeks, not months).

2) I'm guessing you'll arrange your phone so that it doesn't go on the floor in the future but I believe you can arrange for alarms to be sent to family members?

3) Libre irritation. There are a number of threads about this issue and you should be aware that the libre can become inaccurate if the skin around it becomes irritated, so I'd recommend both investigating skintac wipes and doing some spot checks to see whether your libre is reading correctly.

Good luck.

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hi have rang my consultant due to severe hypos he is gonna apply early for dexcom for me x

MeiChanski said:

Dexcom - £150/month is for sensors and 4 transmitters, but it doesn’t come with the transmitter reader. However if your phone is compatible, it should be fine.
There are closed loop systems available and there are a few with the libre and miaomiao have been able to do a DIY closed loop system. I know pumps have a 4 year warranty, I don’t know whether it is improving your management. If it’s hypos and unawareness at night, I think they would ask you to do another basal test to see if it needs changing, run around the level you are now - 8.5 and a little higher which of course doesn’t help your eye situation.
Are you going to give libre another go with a skin barrier product?
Have you spoken to your team about it?

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i have miao mioa but brought me in a rash x none of my parents work they are elderly my sister works and has a 3 year old xx

Fairygodmother said:

Hi @misspinky1984, I haven’t anything to add to what’s already been said by the others so I’m just going to send you hugs and to wish you a speedy recovery from your operation.
Maybe your family could club together to get you a miaomiao and find you a smart watch (I think @Mel d CP got hers on eBay).

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