Dangerous advice from consultant?

[TashT1]

Had a consultation over the phone yesterday & it was confirmed I am 100% T1 so I asked if they could prescribe me a libra & save me £100 a month. Initially she said yes but then phoned back to say I wasn’t eligible. I’m still producing some insulin & have good control.

Over the course of conversation I mentioned being really busy balancing home schooling, work & diabetes. I’m sure she was just trying to help but she gave what I think is really dangerous advice.

Apparently if I can’t keep self funding the libra & finger pricking 8 times a day it is possible I can get away with once or twice a day! Surely this is irresponsible as I’d have no picture at all of what is going on & injecting insulin blind. I politely declined to take her advice saying I’d doubt my control would be as good without the Libra.

But I’m not crazy right? This would be the most stupid & dangerous way to treat my diabetes.

 

[Tophat1900]

Testing once or twice a day would put you at a much greater risk of going hyper and hypo. And injecting insulin without knowing what your level is I think is extremely risky. I know I couldn't manage my own deficiency that way and I certainly wouldn't accept that advice. It's imo that's like ignoring levels and just see what happens.

 

[Rokaab]

I read it as more of a 'IF you don't have the libre and cant cope with many tests a day' then you can probably get away with it, it sounded more like a last ditch effort to get some testing done if you couldn't do the other options.

Noting that at least a few of use were around before home blood glucose monitoring was even an option (let alone anything like the libre) so didn't even have that option.

 

[Maco]

Certainly might not the best advice if she said once or twice, once you wouldn’t have a clue what’s going on. Twice still very vague but 3 times as a bare minimum would probably see you over if you where quite confident your insulin ratios where correct. Before each meal 3x a day but still that’s a bare minimum, 6x a day before & then after meals would be Better.

 

[EllieM]

Personally I need a blood test before every meal so as to inject the correct dose, but I was diagnosed preglucometers and only in the last decade (or so) have I tested that often. I'm now self funding a dexcom so I only test either to calibrate the dexcom or when I'm unusually low.

But for someone who is still producing insulin and is still on relatively low doses, I can see the consultant's argument. In the long run, I suspect there'll be more funding and most T1s will qualify for cgm equivalents. While they are still only funding the most needy, I can see why someone with relatively good control might not qualify. (I'm sorry, it seems very unfair that you'd qualify if your control was worse.)

Twice a day, that's really pushing it. But if your levels are normally in range (ie you're not using correction doses) it might be fine till the honeymoon period ends.

If you do need correction doses then it's poor advice.

 

[KK123]

Had a consultation over the phone yesterday & it was confirmed I am 100% T1 so I asked if they could prescribe me a libra & save me £100 a month. Initially she said yes but then phoned back to say I wasn’t eligible. I’m still producing some insulin & have good control.

Over the course of conversation I mentioned being really busy balancing home schooling, work & diabetes. I’m sure she was just trying to help but she gave what I think is really dangerous advice.

Apparently if I can’t keep self funding the libra & finger pricking 8 times a day it is possible I can get away with once or twice a day! Surely this is irresponsible as I’d have no picture at all of what is going on & injecting insulin blind. I politely declined to take her advice saying I’d doubt my control would be as good without the Libra.

But I’m not crazy right? This would be the most stupid & dangerous way to treat my diabetes.

In my opinion, no, you are not crazy and I don't think her advice was based on you not wanting to finger prick or you having a psychological reason, it was ALL to do with not wanting to give you a libre. I understand that though because they have quite strict criteria on who should be eligible for a libre (you can read this criteria online). MOST type 1s are not getting it. Having said that, her 'once or twice a day' advice is BAD advice whether you are still producing some of your insulin or not. I am still in the honeymoon period (I think) and if anything it can make dosages of insulin MORE tricky.

You do not know prior to a meal for example, whether your own insulin is merrily coming into play or not, you HAVE to test before a meal to gauge how much insulin (or not) you need to take. So, that's an absolute minimum of 3 pricks. Next, what about driving?, if you drive twice a day that's at least 2 MORE pricks. Then onto hypos, VERY likely at the start of diagnosis (and all through of course), so if you feel a hypo, that could be once, twice, three times a day. Then exercise, test before (and possibly after exercise). That is a NORMAL day for me even before you factor in work. That's around 8 to 10 pricks a day, interestingly, the criteria for a libre includes if you are having to test more than 8 times a day! Her advice IS ridiculous for a type 1 or anyone on insulin. COMPLAIN loudly, speak with your Diabetes nurse/team rather than the Consultant, they operate at ground level and can be much more practical. Write down exactly how many times you are having to test and why, the written records will be important. Hope this helps. x

(Edited to add, today's world is very different to how diabetes was managed long ago so please don't be put off by things that are said about people having survived etc,, YOU deserve consideration for whatever gadgets/managerial tools are available).

 

[Jaylee]

Had a consultation over the phone yesterday & it was confirmed I am 100% T1 so I asked if they could prescribe me a libra & save me £100 a month. Initially she said yes but then phoned back to say I wasn’t eligible. I’m still producing some insulin & have good control.

Over the course of conversation I mentioned being really busy balancing home schooling, work & diabetes. I’m sure she was just trying to help but she gave what I think is really dangerous advice.

Apparently if I can’t keep self funding the libra & finger pricking 8 times a day it is possible I can get away with once or twice a day! Surely this is irresponsible as I’d have no picture at all of what is going on & injecting insulin blind. I politely declined to take her advice saying I’d doubt my control would be as good without the Libra.

But I’m not crazy right? This would be the most stupid & dangerous way to treat my diabetes.

Hi,

Yep...? I feel your pain. I mentioned the system to my GP. Last year.
He was all for me having it on script. Working in engineering production, hands filthy most the time. Adhock working practices & wot not. I am hypo awair heading off any highs due to an unstable basal.. (He was actually in favour of changing the basal too. (Another enlightenment documented since using a sensor.)

Saw the DSN. She normally snatches the meter out my hand fumbles with a multi cord adaptor & uploads the data.. Mentioned my Libre.. (Insert non comittal reply from the DSN here.) but she did agree on the basal change. (Based on the Xdrip data I was trying to get her head round.)

Got to see the Endo... (2 weeks later.) He glanced at my CGM set up using Xdrip & a Bluetooth bridge. He turned me down on both.
To be fair. I would of just settled for the basal change.

My personal experience with a fair few DSNs over the years regarding the testing aspect of diabetes, is that testing more than 4 times a day is "too obsessive."
Makes me wonder how often they look at the speedo or check the mirrors whilst driving to work?

 

[KK123]

Hi,

Yep...? I feel your pain. I mentioned the system to my GP. Last year.
He was all for me having it on script. Working in engineering production, hands filthy most the time. Adhock working practices & wot not. I am hypo awair heading off any highs due to an unstable basal.. (He was actually in favour of changing the basal too. (Another enlightenment documented since using a sensor.)

Saw the DSN. She normally snatches the meter out my hand fumbles with a multi cord adaptor & uploads the data.. Mentioned my Libre.. (Insert non comittal reply from the DSN here.) but she did agree on the basal change. (Based on the Xdrip data I was trying to get her head round.)

Got to see the Endo... (2 weeks later.) He glanced at my CGM set up using Xdrip & a Bluetooth bridge. He turned me down on both.
To be fair. I would of just settled for the basal change.

My personal experience with a fair few DSNs over the years regarding the testing aspect of diabetes, is that testing more than 4 times a day is "too obsessive."
Makes me wonder how often they look at the speedo or check the mirrors whilst driving to work?

It's just ridiculous isn't it? I would prefer not to test at ALL or have the condition, but I have to, to manage my health. 4 times a day sorts out meals and one hypo!

 

[Jaylee]

It's just ridiculous isn't it? I would prefer not to test at ALL or have the condition, but I have to, to manage my health. 4 times a day sorts out meals and one hypo!

I have no issue with actual testing.
Before I started using the sensor. On average 12 times a day. With the CGM set up. I still check for calibrations. Or anything that looks errant?
As mentioned earlier, I am fully hypo awair. But an at a glance readout means I'm not using too many carbs to head a low off.
opposed to over treating in the melle of an actual hypo? Same heading north with regards to a correction.

It just makes an easier more productive day.. (In the absence of a fully functioning pancreas.) Especially as a member of a workforce.

 

[Mrs T 123]

Yes I would agree with you it sounds like it could be dangerous - especially for hypos, driving etc. but I am a Type 2 so not an expert in Type 1. Could you maybe talk to another doc who may have a different/more caring view. Take care

 

[KK123]

am a Type 2 so not an expert in Type 1. Could you maybe talk to another doc who may have a different/more caring view.

Hi there, it's not so much about a 'more caring/different view' I couldn't care less whether the Consultant is caring or not, it's an absolute necessity. It's akin to refusing to give you enough insulin. If you don't test then you don't know how much insulin to use, meaning you are going to go high (dangerous and potentially life threatening) or too low (dangerous etc etc).

 

[ert]

I think that it is wrongly assumed all type 1's get FGM Libres. Two years ago it was 3-5 per cent. They are aiming for 20% in the future, with new funding to help people who are struggling: pregnancy term, a disability that you can't monitor BS yourself, monitoring >8 times a day for a period of 3 months, or an occupational need. They fund a CGM for severe hypoglycemia.
https://www.enhertsccg.nhs.uk/sites/default/files/content_files/Prescribing/Local_Decisions/Endocrine_system/FreeStyle Libre - Secondary Care Guidance.pdf

 

[NicoleC1971]

Libre are rationed even though your consultant knows they're the best and easiest way to test. Her advice isn't dangerous just pragmatic in the circumstances. Its a stressful time so don't beat yourself up if you are not doing 8 tests a day should you decide not to pay for the libre ( 3 times a day and when you feel hypo or ill or hyper tooor dirving) is enough if you're stable with dosing and carbs right now IMO. There won't be long term harm done if you have a few high ones either.
Going forward you could research the hoops you will need to jump through in your local area to get FSL on prescription/

 

[searley]

When I was producing some insulin my control was much easier.... I frequently only tested twice a day... I knew from how I felt if I was high or low

So it is possible... dangerous not really just a little more risky... especially if you are hypo aware as you should know when you are low

Of course if you have issues then you'd start to fall in the qualifying categories for lubre

 

[TashT1]

I’m a very data driven person, I like to know what’s going on & what the expected outcome should be so I have no intention of reducing testing & I’ll continue to self fund the Libra.

I’ve spoken to my PhD supervisors & they’ve adjusted my workload for home schooling so this should solve some of the time pressures.

My carb ratios are just not stable enough at the minute to reduce testing, the consultant knows this as she discussed how to adjust them, correction doses & planned changes to basal if that doesn’t work. It was just all a bit conflicting.

To be fair the consultant was really nice, didn’t dismiss my personal choices & thought all T1’s should just be eligible.

Given my CCG has a particular population health agenda focused on prevention I would have thought they’d be a bit more flexible. I used to work for the CCG so I’m going to speak to some old colleagues and lobby for better access for all T1’s. My next c-peptide is in 6 months so who knows I might fit their criteria by then, but I’m not exactly wishing I loose more insulin production too quickly.

 

[Hayley78]

I read it as more of a 'IF you don't have the libre and cant cope with many tests a day' then you can probably get away with it, it sounded more like a last ditch effort to get some testing done if you couldn't do the other options.

Noting that at least a few of use were around before home blood glucose monitoring was even an option (let alone anything like the libre) so didn't even have that option.

I think in the olden days they didn't have carb counting, fast acting insulin, so really didn't need to test before and after each meal, as there were only injections once every 12 hours.

 

[stillgoingstrong]

I think in the olden days they didn't have carb counting, fast acting insulin, so really didn't need to test before and after each meal, as there were only injections once every 12 hours.

How olden are you thinking? I've been diabetic 57 years so are you thinking when I started or before? I used to count calories rather than carbs but it was considered too difficult and the simpler carb counting was introduced. I was on two injections a day but each injection consisted of a fast and a delayed acting insulin so this gave 4 control points through the day. Now I am on a long term insulin that controls background levels throughout the day and 3 fast acting injections to cope with food. This means that I am now controlling with only 3 points rather than four but I can very the time of food easier and now not fixed in time eating. Urine testing was the only method of testing and this only indicates on high levels. My first blood meter was around 1984 and was self funded. Similar discussions were held then as to who would qualify for them. I understand that you want to know what's going on. I used to be a control engineer and my consultant used to say if I couldn't control it then what hope was there for the rest of us. You can't control it at least I can't. You can only do your best. It has been easier for me in some ways as I was not expected to do as much as diabetics do today. There are very few restrictions now on life but it does add to the difficulty of coping. Try not to worry the body is quite good at dealing with things really and your ability to cope with less testing will be better with experience.