Highs and Lows

[ChrisH55]

After 28yrs as Type1 diabetic I'm going through a rough patch. I had a shock early last year when a type 1 friend died without warning of a heart attack. I had been going along OK until then, not the best diabetic but no major issues.
I decided to tighten up my control. I bought a freestyle Libre and really tried to get on top of my carb counting. I have done the DAFNE course. I saw the consultant last month who was concerned that my HBA1c was 41/5.9 and after looking at the information downloaded from my meters said he was concerned about the number of hypos I was having and emphasised the damage they can do.
I have just changed from Lantus to Levemir on the same doses. 5 units at 8am and 3 at 8pm. I have tested these doses and they seem to be OK. I try and restrict my carb intake and bolus Humalog. I have a ratio of 1 unit to 10grams carbs. I generally take about 2 units at breakfast, 3 units at lunch, and 3 or 4 units at dinner. I rotate my injection sites. I am going up and down like a yoyo. I am trying not to correct too much and giving food or insulin time to work. The last few days I seem to be frequently between 12 and 15 which takes a long time to go down.
I wake frequently during the night and test my blood sugar. I know the stress I am experiencing is not helping.
I have spoken to the DSNs who were no help. The first passed me on to a colleague as she did not know much about carb counting! The second only talked about using my health function on my Aviva expert meter, and that it was dangerous to have hypos.
I am quite an active person going to exercise classes and walking. I find if I sit for quite a period after a meal my insulin does not seem to work and my blood sugars just go up until I am active again. I have a healthy diet, drink very little and don't smoke. Also last year I was diagnosed with an over active thyroid and lost over as stone in weight. I do not want to loose any more. I am on medication for this.
Sorry to rant on but I feel at a loss and don't know how to control this. So many of you seem to have such good control, that's where I would like to be. My graphs are like a range of mountains rather than a smooth plain!
Any suggestions would be much appreciated.

 

[Fairygodmother]

Ah, the mountain ranges, gentle hills and soft plains of the Libre: I’ve got to know them well!

The calibration on the sensors doesn’t always match that of the blood sugar monitor and the Libre can often read higher which becomes alarming. I also think we can expect to see a rise after food, and to see differences between active and less active days. I certainly do.

I’ve found that trying to achieve the perfect graph is stressful and thus the graph’s upset. As long as I don’t have major highs or nasty lows I don’t worry overmuch despite being envious of those who seem always to be able to stay within a range of 4 - 7. How do they do it? I’m happy if I have a few good days when I’m 5 - 9. I also find that my insulin needs change in cold weather, with illness, with stress, with lack of sleep, with altered levels of activity and different kinds of food. And I, too, can have times when readings seem to be haywire.

Like you, I’ve recently switched from Lantus to Levemir. It’s taken a bit of time to find the right doses and ratios and to get to grips with the way I now react to different kinds of activity. I did get a bit stressed as I sought perfection. What helped most was having a couple of days off, relaxing, correcting if need be and just enjoying ‘being’.

I’m sorry your T1 friend had a heart attack; it’s sad, especially as it happened out of the blue. You must miss them. Here’s sympathy and a hug

We live with the concerns that the medics want to surround us all with, too, and it’s hard not to feel fear as well as sorrow. I can understand why you wish to find a sense of safety in perfect control.

 

[Scott-C]

@ChrisH55 , now that you've got a libre, there's a couple of books on cgm which might help make the most if it.

Sugar Surfing by Stephen Ponder, and Beyond Fingersticks by William Lee Dubois. Both on kindle.

It's a big difference in approach compared to dafne.

Dafne says don't test between meals unless feeling hypo, and save corrections until meals.

Sugar surfing says if you can see from your graph that you're starting to trend up or down, leave it for 10 to 15 mins to confirm the trend isn't just sensor noise, then decide on whether it needs a little 5g or 1 or 2 u nudge to bring it back in line.

Sure, it might mean a few more shots, but it's just so much easier to tweak it to keep it in line while still in range than take a sledgehammer to it after going out of range.

I've blinged my libre up by putting a £96 blucon transmitter from www.ambrosiasys.com on top and pairing it with xDrip+ on my phone, so I get a cgm trace updated every 5 mins. It improves libre accuracy stacks by letting me calibrate it. The blue dots give me a much clearer picture of insulin action and food absorption so I make better decisions about bolusing. And the alerts mean I can wave goodbye to serious hypos because I'll be woken by my phone ringing when I hit 4.3.

My a1c has gone from 42 to 32 in a year, no serious hypos. Not saying that to show off or anything, just to emphasise that this approach makes a major difference with remarkably little effort.

I feel so much more comfortable now that I can see what my levels are doing and take small steps in real time to gently steer it into line instead of having an out of range drama.

Libre is a powerful tool - make the most of it, mate.

 

[Fairygodmother]

I’ve just downloaded both, @Scott-C, thanks for the info, I’d not come across these two before.

 

[Fairygodmother]

Hi @ChrisH55, sorry, I’ve just leaped on advice given to you. Are you going to get these two books/kindle downloads too?

 

[ChrisH55]

Thank you both for the advise. Yes I'll look at both of these books. It's great that you can get such useful advise from the forum.

 

[Scott-C]

I’ve just downloaded both, @Scott-C, thanks for the info, I’d not come across these two before.

The Dubois one was written in 2009 which is like pre-history in cgm terms, but he still makes a lot of useful points even though the technology has moved on so much since then.

There's an amusing bit where he looks into the future and imagines this future world where we can see bg on our phones. Must have seemed like science fiction back then, but, heck, we got there!

 

[LooperCat]

Sugar Surfing is great, really helped me to get the most out of my Libre - I was lucky enough to have been recommended it as soon as I got my first sensor and devoured it in two days. I was able to make the most of the data right from the start. Can’t recommend it highly enough!

 

[ChrisH55]

Hi
Bought the books, and started to read sugar surfing. Very interesting so far, especially when a non diabetic has such fluctuations in their sugar when eating, or a low during the night.
Thanks again for the help.

 

[dancer]

@ChrisH55, you seem to be on small amounts of insulin. I hope you have a 1/2 unit pen, as this can make a big difference.

 

[LooperCat]

I’ve just acquired a half unit pen myself - it’s making really fine tuning so much easier.

 

[mountaintom]

I can’t make much use of the libre because it’s so wildly inaccurate! I can guess my levels better than it reads them! Not poo pooing it though. It works great for some people. Maybe I’ve just got a dud sensor this time.

 

[ChrisH55]

Yes I do have a half pen Thanks

 

[Kirbster]

I've blinged my libre up by putting a £96 blucon transmitter from www.ambrosiasys.com on top and pairing it with xDrip+ on my phone, so I get a cgm trace updated every 5 mins. It improves libre accuracy stacks by letting me calibrate it. The blue dots give me a much clearer picture of insulin action and food absorption so I make better decisions about bolusing. And the alerts mean I can wave goodbye to serious hypos because I'll be woken by my phone ringing when I hit 4.3.

@Scott-C - I've never heard of this before and it's fascinating me! Just taken a look on their website and it looks as though they only charge in US$. Do they ship to the UK as well? And is it a one off cost, or do you have to buy multiple transmitters like you do with Libre? I can't quite figure out from their website whether it only lasts for 14 days or not. And final question - do you just put it on top of the Libre? Does it make the Libre even bulkier to wear?

Sorry for so many questions, and for hijacking this post!

 

[Scott-C]

Hi, @Kirbster , yes, they ship to the UK. I bought a spare recently, took a couple of weeks to arrive. They sent me a USPS tracking code so I could follow it.

Although the pricing on the site is in dollars, I just used my UK debit card details and it went through fine, converted to £96 for the transmitter and shipping. There's then a £16 VAT import charge and an £8 post office handling charge when it getd to the UK, although there's a way of reclaiming the vat for diabetics, can't recall the name of the form.

Their site is quite confusing. On the face of it, they're selling two versions of it, blucon nightrider and blucon trans-am, but in practice it's only the blucon nightrider which is being sold, so that's the one to choose on the order page.

The blucon nightrider is a one-off cost of £96. I've been using the same one for about ten months and it's doing fine. I just change the cheap CR2032 battery in it every couple of weeks. It's just a bit of electronics, not sure there's any parts to wear out, so I wouldn't be surprised if I get a few years out of it.

The blucon trans-am was the disposable one, which would only last 2 weeks, but the pricing was ridiculously high so I think people just didn't bother with it.

The difference is that the trans-am was waterproof, the nightrider isn't (because of the battery cover) so it means I need to take it off for showers.

It's put on top of the libre sensor. I just hold it in place with a cheap 7 by 8 cm Monlycke Mepore plaster which can be picked up for 17p in most chemists. Others use varieties of armbands and velcro dots.

It's quite compact and I really don't notice it at all. It's circular, fractionally wider than the sensor, and the same height as two sensors stacked on top of each other.

I started a thread about it at link below which has some info on how to set it up with the xDrip+ app, and there's a few screenshots showing the graph you get. The makers of blucon have their own inhouse app for using it with, but it's very basic, xdrip+ is way better.

There's quite a few posters using this set up now and seem to be reasonably happy with it.

https://www.diabetes.co.uk/forum/th...h-libre-blucon-and-xdrip.127195/#post-1575995

 

[Leeannea]

Hi. I have a blucon on my Libre and it is great. I’m in Australia and it was posted to here. The device is a one off purchase and you just replace the battery. I’ve had mine for 3 weeks now. You stick it on over the Libre and it adds about the thickness of a coin to the height of the Libre. I stick mine on with paper based medical tape then for added security put a layer of bandage around it. A stronger adhesive tape would take away the need for the bandage but as the blucon isn’t waterproof you have to remove it to shower. That’s the only downside as you have to be careful not to pull out the Libre. Hence the not so sticky tape. It is a great device and much more accurate than the Libre by its self. Cheers Leeanne

 

[badmedisin]

Have you tried playing with your insulin:carb ratios? It can be different for different meals, my breakfast ratio is lower than my lunch ratio. And proteins can affect BG as well, maybe some of the hardcore low carb experts can help explain how to deal with that?

 

[ChrisH55]

Thanks, yes I am starting to take a little more insulin at lunch time.

 

[Deleted Account]

I can’t make much use of the libre because it’s so wildly inaccurate! I can guess my levels better than it reads them! Not poo pooing it though. It works great for some people. Maybe I’ve just got a dud sensor this time.

I thought exactly the same as you. Got very frustrated and never bothered again.
Then I stopped and thought about it.
Sure, the Libre values were pretty rubbish for me but they seemed to go up and down approximately similar times (plus about 15 minutes due to the difference in interstitial fluids and blood) to finger pricks just not by the same amount.
I am now considering funding my own again to learn whether I should take my insulin earlier or later when I specific foods. As I mentioned in another post, I eat a huge variety of different foods but I think I could work out some general rules of thumb (or rules of thumbs?) such as when to inject for pasta, bread, ...