Freestyle Libre

[mancview]

I've just read this email. I understand that type 1's need this type of constant monitoring I,m classed as type two. The diabetes has been caused by several bouts of pancreatitis. My beef with this decision is that (1) Not all type 1's are eligible and (2) what about us classed as type 2 who are hypo unaware. I tested my blood yesterday about 5pm and it was 1.7. I didn't feel a thing. OK rant over.

[link to possible personal details removed by moderator.]

 

[JohnEGreen]

That seems to be a problem GP's in general seem to think of diabetes in terms of just 2 classification either T1 or T2 and don't see that there are other types who don't really fit into that say T3c's or like me T3e drug induced I have been down to 2.2 never as low as 1.7 as far as I know. I have been thinking of self funding a libre or maybe just sensors but it is a lot of money.

 

[EllieM]

I tested my blood yesterday about 5pm and it was 1.7. I didn't feel a thing. OK rant over.

So you're on insulin? I'd make a strong case to your doctor.

The diabetes has been caused by several bouts of pancreatitis.

Does that make it 3c rather than 2? If the powers that be are only recognising 1/2 I'd have thought lack of insulin would be more like 1 than 2 anyway. (I know T2s can progress to insulin but I didn't think that was caused by pancreatitis?). Maybe you could ask to be reclassified as T1? (OK, clutching at straws here.)

If it's any consolation, the libre can help with hypos but you'd need to fit it with after market alarms and it isn't accurate for everyone. (It doesn't work at all for me.)

Mind you, last time I tested and got a reading in the 1s I didn't feel hypo and when I retested it was in normal range, meters can err.
Lots of hugs, I honestly find hypos the worst part of the illness. Last time I started to lose hypo awareness I regained it be keeping my levels between 6 to 12 for a few months (as suggested by my diabetic specialist). But I wouldn't suggest anyone else try this unless under doctor's orders. Has your DSN made any suggestions to help you with this issue?

 

[JohnEGreen]

@EllieM

Pancreatitis can damage the insulin producing cells but mainly I think with cronic pancreatitis rather than acute but it could be that acute pancreatitis especially with repeated episodes may also be damaging. And reduce the ability to produce insulin.

 

[Scott-C]

That seems to be a problem GP's in general seem to think of diabetes in terms of just 2 classification either T1 or T2 and don't see that there are other types who don't really fit into that say T3c's or like me T3e drug induced I have been down to 2.2 never as low as 1.7 as far as I know. I have been thinking of self funding a libre or maybe just sensors but it is a lot of money.

John, I've had a look at the new NHS libre guidelines, click on the pdf link in this link:

https://www.england.nhs.uk/publicat...ts-for-funding-of-relevant-diabetes-patients/

While it's aimed at T1s, note at page 3 of the PDF, the criterion also address "diabetes associated with cystic fibrosis on insulin treatment."

That's a non-typical type of diabetes. I was vaguely aware of it through following Partha Kar's tweets but didn't know what it was till I googled it, for example:

https://www.cff.org/Life-With-CF/Daily-Life/Cystic-Fibrosis-Related-Diabetes/

CF diabetes isn't T1 or T2. I've not been following the politics of it closely enough to say why CF diabetes ended up included on the list, but I suspect there was a lot of politicking going on, and Partha Kar was heavily supportive of it.

Here's his twitter stuff:

https://mobile.twitter.com/parthaskar?ref_src=twsrc^google|twcamp^serp|twgr^author

Because CF diabetes, which is not T1, is now in the guidelines, I wonder whether there is scope for the relatively rare T3c/e peeps to push their case too if insulin shots are involved.

How you do that, I don't know, (is there a T3 advocacy group?) but I can tell you that when Partha (as national lead on T1)was involved in writing/negotiating/wrangling the guidelines, he said that not everyone was going to be happy with them, but, operating within the limits of NHS politics, they were do-able and a good starting point for expected loosening up as time went by.

These rules are going to loosen up and I think there is plenty of scope there for non-typical types of diabetes making their case if there's a big hypo risk.

 

[JohnEGreen]

John, I've had a look at the new NHS libre guidelines, click on the pdf link in this link:

https://www.england.nhs.uk/publicat...ts-for-funding-of-relevant-diabetes-patients/

While it's aimed at T1s, note at page 3 of the PDF, the criterion also address "diabetes associated with cystic fibrosis on insulin treatment."

That's a non-typical type of diabetes. I was vaguely aware of it through following Partha Kar's tweets but didn't know what it was till I googled it, for example:

https://www.cff.org/Life-With-CF/Daily-Life/Cystic-Fibrosis-Related-Diabetes/

CF diabetes isn't T1 or T2. I've not been following the politics of it closely enough to say why CF diabetes ended up included on the list, but I suspect there was a lot of politicking going on, and Partha Kar was heavily supportive of it.

Here's his twitter stuff:

https://mobile.twitter.com/parthaskar?ref_src=twsrc^google|twcamp^serp|twgr^author

Because CF diabetes, which is not T1, is now in the guidelines, I wonder whether there is scope for the relatively rare T3c/e peeps to push their case too if insulin shots are involved.

How you do that, I don't know, (is there a T3 advocacy group?) but I can tell you that when Partha (as national lead on T1)was involved in writing/negotiating/wrangling the guidelines, he said that not everyone was going to be happy with them, but, operating within the limits of NHS politics, they were do-able and a good starting point for expected loosening up as time went by.

These rules are going to loosen up and I think there is plenty of scope there for non-typical types of diabetes making their case if there's a big hypo risk.

I have a nephew with CF my wife is a carrier luckily I'm not my wife's cousin's lad died at 22 because of it CF diabetes is a strange mix to be sure but as CF affects the pancreas directly it is definitely T3 .

I personally think that any tool that can help manage diabetes should be considered by the NHS no matter what form of diabetes.
Complications arising from D are going to bankrupt the NHS eventually if nothing is done.