Eligibility for Flash monitoring

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Morgan444

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Type 1
I was diagnosed with type 1 in October 2021 and invested in freestyle Libre monitoring pretty much straight away. I am very diligent (possibly obsessive) about scanning so this reduced my A1C score to 6.3 which the diabetes team said was really good. I got the sensor on prescription in March 2022 and have found it indispensable, especially since I run so I can set an alarm for when my glucose hits 5.6 so I can take preventive action. I have had some occasions lately where my glucose has gone high overnight, often for no apparent reason (last night it rocketed to 17 then plummeted to 5 and I have no idea why). The consequence is that my predicted A1C on the Libre has now risen to 6.4. I know this is still good but one of the eligibility criteria for getting it on prescription is that the sensor has enabled me to lower my A1C. When I had my first review meeting with the diabetes team before getting the prescription they advised that I was perhaps monitoring too closely and that I should be more laid back as I was getting frequent hypos (2-3 a week). I have done this and hypos are now rare but time in target has reduced as I am going higher more often (time in target is still around 88% as opposed to 92% before). Has anyone had any experience of starting from a low A1C and then not quite maintaining it? Are they likely to remove my prescription? I would be very uneasy about doing without my sensor now as I would feel unable to exercise and this is a key element of my diabetes management.
 
I think it would be extremely unlikely that you would lose your prescription in these circumstances. I don't know what the error bars are on HbA1C measurements - it probably depends on a lot of factors - but I'd bet my hat that a difference between 6.3 and 6.4 is inconsequential. If it had jumped to 7.3, I'd guess that your team would want to ask why, but I'd still bet that they wouldn't take away your prescription.
 
I presume you have the Libre software set up to upload your scans and that it is linked to your clinic so they can see your records online? They can clearly see from the website that you have eliminated the majority of your lows and that in itself is an improvement. It would be impossible to continually reduce your Hba1c, which can fluctuate by minor degrees. Given the 42 factors affecting blood sugar it's impossible to avoid all and every spike too.

In short, no they are highly unlikely to take it off you due to the occasional spike. 88% in range is excellent.
 
I agree that it would be exceptional for them to remove the Libre from prescription even if your HbA1c had shot up. The NICE guidelines for prescribing Libre have changed recently and the new criteria for Libre on prescription are much lower..... basically being Type 1 and on MDI..... so I think you can be safe in the presumption that you won't be losing your Libre anytime soon.
I think it is also important to have reasonable expectation of what is normal and achievable with diabetes. You cannot continue to reduce HbA1c and there will be minor and sometimes more significant variation due to a large number of factors, even if you keep your routine, diet and management the same.
I imagine you are still in your honeymoon phase where your own insulin production is still trickling a little bit out and may be rounding the edges off your levels..... or other people find the honeymoon period more tricky and unpredictable. When it comes to an end, you sometimes have to develop new strategies to manage your levels and during the interim period things can go a bit haywire. It is important to understand that this happens from time to time and you need to take it in your stride, do your best to manage things and after that, just wait for it to settle down. I find there is a sort of ebb and flow when I have really great levels for a week or two and then things go a bit awry and then settle down again. I used to get very frustrated by this which doesn't help. Now I just check and adjust my basal doses if necessary and then just wait for normality to resume..... and it does.

Your TIR of 88% is excellent and you have reduced your hypos which is very good but there will almost certainly be a slight cost to that, which is a slightly increased HbA1c. Your team would be unrealistic if they didn't expect that.
 
Hi @Morgan444 .
A few thing care to mind when I read your message
  1. In England, a new edition of the NICE guidelines have been released this year which recommends everyone treated with insulin has access to CGM or Libre. This is only a guideline and some CCGs may be slow in adopting it but, as you already have a Libre, you are even less likely to have it taken away.
  2. Are you sure the overnight 17 was real? If you spiked and then returned to normal with no additional insulin, it may have been a blip. Libre are not 100% accurate all the time. I was advised to look for trends and worry less about blips.Highs should always be checked against finger pricks before treating and lows should always be checked unless you feel hypo.
  3. Libre uses a different mechanism to estimate HbA1C than blood tests so can be significantly different. I would not bother comparing the two (there Was a difference of about 20% for me). It is useful to look at the Libre HbA1C estimate for trends in that but not as a comparison.
  4. You mentioned you maybe obsessive with regards to checking your levels. Take care. Diabetes burn out is a real thing. It is a good idea to work out what level of balance between living your life and managing your diabetes is maintainable and healthy for your mental state.
Sorry, I have rambled on. Thank you for reading all my waffles if you have got this far.
 
Hi @Morgan444 🙂 As others have said, they won’t take your Libre away. It would be nonsensical to do so. More important is this:

When I had my first review meeting with the diabetes team before getting the prescription they advised that I was perhaps monitoring too closely.

You have a choice. You can, from this moment forward, dedicate your whole life to chasing an impossible dream: perfect control of your Type 1. Or you can live your life and fit the diabetes in. I’m not being flippant or melodramatic. Too much focus on unattainable control will drive you mad and burn you out very quickly. You already have good control. Anything above 70% TIR on the Libre is good. The fact you’re obsessing about a rogue 17 ‘messing up your HbA1C’ is very sad. I don’t even bother looking at what the Libre says about my HbA1C. The Libre is not so accurate at higher numbers anyway.

The name of the Diabetes U.K. magazine is Balance. I like the name a lot because I see it as not just referring to the juggling of balancing your blood sugar, but to maintaining a mental and emotional balance too. That’s equally as important.
 
Well most of us were told 70% in range was what to aim for, with as few under 4 and over 10 as we can, but they accept we can't avoid them all. They accept that sometimes we can and sometimes we can't.
 
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