Advice

[Lucyr]

Sorry not to reply directly to your responses to my last post but I just cannot win today. My levels have been up and down constantly. I had a hypo of 3.6 earlier (according to the libre when my bloods said 5.1), tested again and my libre said 3.3 with the downwards arrow so I acted with half a carton of orange juice and ate my dinner as usual, then shot up to a 14.1 a couple of hours later with an upwards arrow. I did a tiny bit of exercise in hopes it would decrease and my levels plummeted to 7.0 within one hour with the libre arrow facing down but to the right. I am so frustrated with this, I don’t know what’s going on. Safe to say I will be going to bed in tears tonight

This sounds more like your libre reading a bit low than your bloods being low? If your blood said 5.1 when the libre said 3.6 and 3.3 then you weren’t low, your libre was just reading a bit low.

 

[rebrascora]

So sorry to hear you are anxious and frustrated. @Lucyr is right. Trust your finger prick and how you feel over the Libre reading every time. Libre can read lower for a variety of reasons. Have you been wearing the strap over it as increased pressure on it can make it read lower than you actually are. I taped mine down a bit too tightly with micropore once and that caused it to read low.

Unfortunately trying to impersonate a pancreas is not a very easy task and even 2 years down the line I have hypoed twice today and currently up at 12.3 and about to head out for a walk up to my stables to help bring it down along with a 1.5 unit correction.
You will learn to be less frustrated when things don't go right and just do the best you can and accept that somedays the beast doesn't play fair and won't be tamed.... we sometimes say that the Daibetes Fairy (DF) is visiting. She is more of an evil little minx than a true fairy and she plays havoc with your levels. It helps to have something to blame when you can't see a reason for things. We are also very happy for you to have a good rant about it when you do feel frustrated because letting off steam to people who understand the frustration is better than taking it out on nearest and dearest who don't really "get it"
Hope you are feeling a little better now but you will learn to roll with the punches. I naively thought that a couple of hypos a year would be normal-ish when I first started. I think I had 2 in a week early in that first summer and started to worry. Now I have 2 in a day (not every day thankfully but it happens occasionally) and I barely blink an eye other than to try to figure out how it happened and work out a strategy to prevent it next time, but it doesn't always work.

 

[Inka]

Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick. Remember too that you’re still in your honeymoon and that makes blood sugar more erratic. The most frustrating thing about Type 1 is the need to adjust things so much. Other conditions mean you’re given a dose of meds to take and that’s it, but in Type 1 you’re nudging things this way and that on a daily basis, sometimes a number of times a day. Don’t take the numbers personally or think you’re failing at all. Being your own pancreas is a very hard job and perfection isn’t possible. X

 

[PattiEvans]

Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick.

Except that if you do not scan every 8 hours then you will lose the record of your BGs so that the team will not be able to look at the data. So do scan every 8 hours at least.

For your interest, this link is to a document that explains a lot about the Libre. If you scroll down to page 16 it explains much more clearly what the trend arrows do and in what time frame to look at them. For example, a slanting arrow to the right indicates that you will be dropping 0.6 - 0.9 mmol/l within the next 10 - 15 minutes. Indicating your 7.0 would reduce to 5 in approximately 30 minutes or more, so no need to panic and in the meantime the trend could change. Actually it's worth reading through apart from that graph. If you have an hour to spare there is a very good webinar by Abbott "How to interpret Trend Arrows". I was invited to all the Webinars when they first came out live and found them extremely useful. Our Admin , (everydayupsandowns) makes an appearance in some of them!

Lastly from me... take notice of what others have already said. No T1 has perfect control. The international consensual agreement recommends no more than 5% of your time below 3.9, but even the most experienced T1 will sometimes find it really hard to achieve that. Needs change with the wind and the weather (e.g. if it's hot you will probably need less insulin), whether you've done exercise, if you are ill and if the moon is in Aquarius😉, Honestly don't stress too much.

 

[PattiEvans]

I appreciate your thoughts Patti, but I am the same weight I was a year ago. It was increased exercise which appeared to trigger the start of the nocturnal hypos and reduction in evening basal until eventually I was still hypoing with none, which is why I came up with the idea that my muscles must be replenishing their stores during the night rather than it being the tail end of the Levemir. I assumed that I therefore wouldn't go too low but that 2.9 the other morning, 22hrs after my morning Levemir injection, says that isn't a safe assumption.

I would welcome any comments you have although I must apologise to @LittleSunflower for hijacking her thread. Hopefully we can both learn from your comments/experience.

With apologies from me to Little Sunflower also! Perhaps we should start another thread, or maybe Admin could split this one?

2 thoughts and you sound like you know the first... Exercise lowers insulin resistance and makes your body more receptive to converting BG to energy, thus dropping BG. The second one is that your Levemir could be lasting longer than you think. According to the graph I posted the link to, the lower the dose per kilogram of weight the shorter the duration. As you ramp up the dose per kilo of body weight, the longer it lasts. I do know it's difficult to get your head round that chart, but as an example (I do not know your weight), take a person of 9.5 stones which translates to 60.45 kilos taking 0.2u insulin per kilo of body weight i.e.approx 12u then the Levemir will in all likelyhood run out after 16-18 hours. If that same person was taking 24u i.e. 0.4u per kilo of body weight, then the Levemir will probably last 22 hours.

 

[rebrascora]

@Pattidevans

Thanks for that. Yes I am familiar with that Levemir activity graph and how to interpret it. I am about 64kg. I looked at it in detail last November when the nocturnal hypos started. At the time I was taking 16 units of Levemir in the morning and gradually whittled it down from 5/6 units at night to none and the hypos still continued albeit intermittent. I had to bump my bedtime BG levels up to 10 or 11 to keep me from dropping low usually between 3-5am. Rang my hospital clinic helpline in the end and the DSN was a bit mystified too and just suggested I keep doing what I was doing and keep my bedtime levels high. Since Feb my basal needs have increased and I am now on 22 units in the morning which obviously will change my profile on the graph and extend the length of activity and I hadn't factored that in but since the hypos were happening in Nov, when I was on less basal and still happening it doesn't really help.

Of course the graph is just a guide and as with all biological systems it may be that my body reacts slightly differently (probably slower) than is the "norm". I know my QA insulin is slow to get going and I need 45 mins for Fiasp before breakfast and an hour plus with NR so maybe my body is more to one end of the spectrum of "normal" than the middle......
Anyway, the wind is changing and the last 3 nights I have woken up high 9-13s so I am probably going to try 1-2 units of Levemir tonight and see what happens. I did a 3 unit correction this morning which almost completely disappeared, so I wonder if this second vaccine that I had yesterday is messing with things again too. There is always something to put a spanner in the works!

 

[PattiEvans]

Ahhh yes, it could well be the 2nd dose of vaccine. I had hideous high BGs for a week to 10 days after the first one, but absolutely no reaction at all to the 2nd one. As you say, everyone is different.

 

[everydayupsanddowns]

Sorry to hear you are having such a runaround with your BGs at the moment @LittleSunflower - hope you can quell the anxiety and know that you are doing your best. The sorts of hypos you are having, while unpleasant and in need of urgent treatment, are arguably not immediately threatening, so you have time to experiment.

What time are you eating your evening meal? Bolus insulin can hang around a very long time, 4-6 hours, so if you are eating evening meal at 7-8ish you may be going to bed with the tail end of your food bolus still working?

 

[LittleSunflower]

Sorry to hear you are having such a runaround with your BGs at the moment @LittleSunflower - hope you can quell the anxiety and know that you are doing your best. The sorts of hypos you are having, while unpleasant and in need of urgent treatment, are arguably not immediately threatening, so you have time to experiment.

What time are you eating your evening meal? Bolus insulin can hang around a very long time, 4-6 hours, so if you are eating evening meal at 7-8ish you may be going to bed with the tail end of your food bolus still working?

Thank you @everydayupsanddowns
I don’t believe I’m on bolus at the moment - still getting used to the diabetic terms haha. I only take 2 units of Levemir in the morning now (reduced from the 3 yesterday). I am fluctuating after I’ve eaten something and when I’ve moved around a bit more during the day which could encourage the fact I may need the 1 unit or even the half unit pen of Novorapid introducing soon. I am super sensitive to insulin and they believe I’m in a honeymoon period at the moment.

 

[LittleSunflower]

Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick. Remember too that you’re still in your honeymoon and that makes blood sugar more erratic. The most frustrating thing about Type 1 is the need to adjust things so much. Other conditions mean you’re given a dose of meds to take and that’s it, but in Type 1 you’re nudging things this way and that on a daily basis, sometimes a number of times a day. Don’t take the numbers personally or think you’re failing at all. Being your own pancreas is a very hard job and perfection isn’t possible. X

Thank you so much for this, it’s really helped put things into perspective for me after such a rubbish day yesterday.
I will definitely finger prick a bit more again instead of completely relying on the libre data. It is good to have a rough guide of where my levels are heading though - I think the arrows are my favourite thing about it, along with the daily graph to see what my levels have done throughout the day. X

 

[LittleSunflower]

So sorry to hear you are anxious and frustrated. @Lucyr is right. Trust your finger prick and how you feel over the Libre reading every time. Libre can read lower for a variety of reasons. Have you been wearing the strap over it as increased pressure on it can make it read lower than you actually are. I taped mine down a bit too tightly with micropore once and that caused it to read low.

Unfortunately trying to impersonate a pancreas is not a very easy task and even 2 years down the line I have hypoed twice today and currently up at 12.3 and about to head out for a walk up to my stables to help bring it down along with a 1.5 unit correction.
You will learn to be less frustrated when things don't go right and just do the best you can and accept that somedays the beast doesn't play fair and won't be tamed.... we sometimes say that the Daibetes Fairy (DF) is visiting. She is more of an evil little minx than a true fairy and she plays havoc with your levels. It helps to have something to blame when you can't see a reason for things. We are also very happy for you to have a good rant about it when you do feel frustrated because letting off steam to people who understand the frustration is better than taking it out on nearest and dearest who don't really "get it"
Hope you are feeling a little better now but you will learn to roll with the punches. I naively thought that a couple of hypos a year would be normal-ish when I first started. I think I had 2 in a week early in that first summer and started to worry. Now I have 2 in a day (not every day thankfully but it happens occasionally) and I barely blink an eye other than to try to figure out how it happened and work out a strategy to prevent it next time, but it doesn't always work.

I haven’t worn the band much as my libre is in a weird place, I’ve stopped feeling it in my arm but when the band is on, I know it’s there again so it’s a strange sensation!

We sound very similar in what we are experiencing at times with our diabetes, your words have helped me tremendously and make me feel less alone, along with @Inka . Thank you and I hope you’ve been ok today with less hypo readings x

 

[rebrascora]

I think it just helps to understand what "normal" is and that there is a huge range of "normal" with diabetes. I know when I had 2 hypos in a week that first summer, I was really panicking and then someone very experienced here on the forum and whose opinion I respected, told me that they had 2 in a day quite often and that helped put things into perspective. The realisation that whilst they are to be avoided as much as possible, they happen despite your best efforts.... just like going high does too (I am currently at a whopping 19!!! as a result of my Covid jab yesterday!!) and you just have to accept that your best is all you can do and deal with whatever happens, which is beyond your control.
Anyway, the good news is no hypos today for me.... so far!!

 

[Inka]

Weirdly this chart shows bottom of bum. I’ve never done that.

https://forum.diabetes.org.uk/boards/attachments/4365afc2-1729-49e0-bdf6-132b83da74ae-jpeg.16641/

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