So fed up

[Beaker76]

I was diagnosed with type 1 four years ago at the age of 52. I have been on the course. I have tried libre 2 but keep having signal loss, i have tried Dexcom 1 no signal loss but you can’t record carbs on insulin which seems pretty pointless. My Hba1c is always between 96 and 106. The only time it’s been around 50 is when i was going to the gym nearly everyday during the school holidays and half starving myself. I have tried booking an appointment with the diabetic nurse but she only works until 2pm and thats the earliest I can get there. I have tried speaking to my doctor (diabetic specialist at the surgery) he said he can’t help and i need to speak to the diabetic nurse. I cant speak to my husband as he just says “i dont know about it.” If my alarm goes off at night he always sighs heavily. When i see my consultant she says I haven’t put enough information into the app. I download my insulin doses from my pen and put in my carbs, i dont know what else she wants as i dont exercise anymore. I feel so angry i have tried keeping my glucose levels lower but end up with so many lows then huge highs when i treat them. How can you manage diabetes and live a normal life its not possible. I work at a school and also have children i need to pick up from school each day. You cant just say “i cant pick you up my blood sugar is low so you’ll have to wait.”I cant get into a routine because no day is the same. My husband cant help because he works ridiculous hours and is often abroad for work.

 

[Inka]

Welcome @Beaker76 🙂 Yes, Type 1 is hard. It’s particularly hard if you have unpredictable days, eg because you have children. I usually eat the same breakfast and lunch most days just to remove one variation and that helps.

I know you said you went on the course, which I presume was DAFNE, but maybe you could do BERTIE for a refresher?

Bertie Diabetes

What insulins do you take? What are your meal ratios?

 

[Bruce Stephens]

I have tried libre 2 but keep having signal loss,

That's certainly annoying, but you could still get value out of it by scanning the thing at least every 8 hours. (Which is how it was for everyone not so long ago.) That would give you (and your healthcare team) graphs, which would hopefully suggest patterns of things you could look to adjust.

 

[rebrascora]

Hi and welcome from me too.

Really sorry you are going through a rough time and don't feel like you are being supported either emotionally or professionally, and finding it really hard to balance your diabetes management with your everyday life.
I wonder if your basal insulin doses are not right or a different basal insulin might work better for you. There is a difference in the profile of different insulins and what suits one person, doesn't always suit another with a different lifestyle. Learning about the different insulins and trying one which is more likely to suit you may be an option. The first thing to do though is usually a basal test which involves skipping a meal in rotation over a period of days to see how your levels react in the absence of food and bolus insuin. Ideally you are looking for your basal insulin to hold you reasonably steady. When my diabetes is difficult and frustrating it is almost always because my basal insulin dose is wrong and needs a bit of adjustment..... and I have to adjust it quite frequently because my lifestyle is very variable. Thankfully I have a basal insulin which allows that adjustment because it is one of the shortest acting basal insulins and I take it twice a day. On the other hand, there are basal insulins like Tresiba which last 36 hours and each dose tops up the previous one. Those are much less flexible but provide a lot of stability for people who have a fairly regular lifestyle. Also some people need a fairly even amount of basal insulin day and night, whereas others need a lot more during the day and very little at night (like me) and a few need more basal insulin during the night and less during the day. A long acting insulin like Tresiba gives a uniform amount day and night so not really suitable for the latter 2 groups.

Diabetes is complicated and you have to learn to be your own expert to manage it well because 10 mins with a consultant once or twice a year is not nearly long enough for them to understand your lifestyle and insulin needs.

As regards Libre dropping out, I had real problems towards the end of last week with that. You just need to scan the sensor to reconnect, although it is a little annoying when it happens a lot but for me being used to scanning with a reader all the time, it hasn't been a big issue. I wondered if the solar flares this past week might have been responsible for the increased loss of signal.
Were you aware that you can just scan to reconnect it and fill in the lost data on the graph or was it dropping out overnight? I have a feeling mine drops out more when my phone battery is getting low.
As regards your husband sighing when your alarm goes off, I hope he doesn't snore or start snoring as you can then get your own back! Hopefully you are aware that Libre (and other CGMs) can suffer from compression lows which are false lows caused by lying on the arm with the sensor. I have mostly learned not to now in the same way as you learn not to roll out of bed, but if you are not aware of the problem, you can't learn not to do it.

Anyway, I hope that being a member of the forum will help you both in terms of providing an outlet for your frustrations and daily challenges with diabetes (since your nearest and dearest doesn't get it) as it is for most of us but also a gold mine of knowledge where you can pick up tips and tricks and learn to become your own diabetes specialist.

 

[Proud to be erratic]

Welcome also from here, @Beaker76. I had endless difficulties with Libre 2, then moved onto Dexcom One which was a bit better than Libre 2 but still not vg and, as you said, didn't allow me to log meals and insulin. My Consultant recognised my difficulty and made a case for the Hospital to fund and supply Dexcom G7 - which has been way better. I also asked for and got the G7 hand held Receiver, which has overcome any phone / wi-fi issues.

I believe Dexcom One is being phased out and to be replaced by Dexcome One+, a very different device than Dex One and very similar to G7. This might be a solution for you?

 

[DaveB]

Hi. Signal loss problems with Libre 2 is unusual. Mine responds up to 10-20 metres away and you can always scan manually. Sounds like your phone may be the problem.