Finally, battle won, thank you forum users!!

[mattski]

Apologies for my absence, I've been a poorly lad.
For those incredibly kind and supportive folks on here who have been nothing but kind, supportive, informative and incredibly helpful, I am at last wearing a CGM libre 2 plus on my arm.
Following investigation for insulinomas, reactive hypoglycemia, adrenal insufficiency, having recently had 2 weeks in hospital with pneumonia, currently on steroids and with BG readings constantly over 22, my fight for a CGM has been won and already proved useful as the hospital team connected to it Friday, read my data and doubled my units of trurapi and increased the Lantus.

There is absolutely no way I would have had the strength to stand my ground, argue my case, continuously fought and got the right result without the incredibly helpful people here who have had my back from the start of my journey.
Your shared knowledge, wisdom, willingness to help in all number of ways has been invaluable and it is with the most sincere gratitude I wanted to say thank you.

Next challenge is to get off the steroids and get these readings down!!

With much love, warmth and appreciation,
Matt x

 

[Inka]

Great news re the Libre @mattski but sorry to hear you’ve been so ill. I hope you feel better soon and can stop the steroids.

 

[everydayupsanddowns]

Great news @mattski

Glad you’ve got the tech you need now.

 

[mattski]

Great news re the Libre @mattski but sorry to hear you’ve been so ill. I hope you feel better soon and can stop the steroids.

Thank you @Inka
I've had a pretty rotten year with the lungs and am currently still on 8 steroids daily which is causing mayhem with BG readings, however the Libre has already given me more confidence using insulin as my doses have gone from on average 3 units per meal to 8 units per meal but I no longer get sit there waiting for the hypo to hit so it's a huge win and has really reduced some of the stress

 

[mattski]

Great news @mattski

Glad you’ve got the tech you need now.

Thank you @everydayupsanddowns
It's certainly already proving very useful

 

[pjgtech]

good news, all the best with it buddy....

 

[mattski]

good news, all the best with it buddy....

Thank you @pjgtech much appreciated

 

[mashedupmatt]

Great news @mattski so glad you have access to the technology you clearly need to make your life easier (a real bug bear of mine!) - really hope it all works out for you - we're all on your side fella - Big Love

 

[mattski]

Great news @mattski so glad you have access to the technology you clearly need to make your life easier (a real bug bear of mine!) - really hope it all works out for you - we're all on your side fella - Big Love

Thanks @mashedupmatt
It's been going on for 16 months and all I ever ran into is you're not a type 1 so you don't qualify, my argument was always I'm not a type 2 either and with the rare type of asthma I have, steroids have been an issue for over 20 years and it's not getting better the older I get and my lungs haven't held an arm and said " oh, you're diabetic now, ok, we'll tow the line then ".

After hospital admissions, 3 times I was told I could have it, 3 times back peddled and then told no.
I was finger pricking 8 times a day, on 4 insulin doses daily so this time I refused to leave the room until it was prescribed.
Thankfully, a lovely dr said " this is ridiculous, your fighting for the best control you can have, usually we have the opposite problem and have to motivate people to want better control. You're sitting above 20+

A little bit later I get an email from the Dr with the link for training and here we are.
The information from people on here regarding my type of diabetes, their encouragement, is what got me stubborn but ultimately resolved, sometimes it's about the long war rather than the short fight hey!!

Sorry, that was a massive ramble, poor guy, I should have just said "cheers mate" lol

 

[mattski]

That should have said AGM, not arm, presumptuous predicted text lol

 

[helli]

Great news on the CGM @mattski.
I don't want to dampen your excitement but it is very important to remember that CGMs are designed to be most accurate at "normal" levels (between about 4 and 9 mmol/l). Outside of this range, the CGM can overegg highs. So your 22 may not be as high. The trends you get from the CGM is still useful but, if you are taking insulin, it is recommended to use check highs with finger pricks before calculating the insulin dose.

 

[Lucyr]

I was finger pricking 8 times a day, on 4 insulin doses daily so this time I refused to leave the room until it was prescribed.
Thankfully, a lovely dr said " this is ridiculous, your fighting for the best control you can have, usually we have the opposite problem and have to motivate people to want better control. You're sitting above 20+

You still need to fingerprick before correcting highs of 20+ though, you can’t just go by what the libre says as it’s accurate within target range, less accurate for highs and lows.

 

[mattski]

Great news on the CGM @mattski.
I don't want to dampen your excitement but it is very important to remember that CGMs are designed to be most accurate at "normal" levels (between about 4 and 9 mmol/l). Outside of this range, the CGM can overegg highs. So your 22 may not be as high. The trends you get from the CGM is still useful but, if you are taking insulin, it is recommended to use check highs with finger pricks before calculating the insulin dose.

Hey @helli
Thank you for your post, it far from dampening.....I think knowledge is power and I am always open to learning/understanding more and at the end of the day, the very last thing I'd want to do is over dose the insulin so all advice is gratefully received.

The hospital called yesterday and increased my Lantus so that's gone from 10 units to 14 and the trurapi has doubled.this week in incremental increases but I haven't had any readings in the last 3 days under 15 despite the increases.
Symptomaticly, I feel like I read, I'm using a sliding scale at present but doing the carb counting course in January.

I shall moving forwards finger prick at higher points and thank you for the time taken to help 🙂

 

[goodybags]

Hi @mattski good to read you got them to fund what will help you

 

[mattski]

You still need to fingerprick before correcting highs of 20+ though, you can’t just go by what the libre says as it’s accurate within target range, less accurate for highs and lows.

Hi @Lucyr
As someone new to CGMs, any advice or knowledge passed on is very gratefully received.
Forum users such as yourself that take the time to message is what makes this community so great so thank you for taking the time to message 🙂

 

[mattski]

Hi @mattski good to read you got them to fund what will help you

Hi @goodybags
Thank you. It's taken a few arguments and 16 months but all's well that ends well hey!!

If you don't mind me asking, how do you find mounjaro?
The steroids have somewhat blown me up and a Dr talked about me having weekly injections of it, I had real problems tolerating various drugs from a gastrointestinal point so wondered how you found it?

 

[goodybags]

Hi @goodybags
Thank you. It's taken a few arguments and 16 months but all's well that ends well hey!!

If you don't mind me asking, how do you find mounjaro?
The steroids have somewhat blown me up and a Dr talked about me having weekly injections of it, I had real problems tolerating various drugs from a gastrointestinal point so wondered how you found it?

I’ve got on fine with Mounjaro thanks @mattski
but obviously we are all different, maybe if your GP thinks it might help - hey maybe it will ?
I see like me your taking insulin (although I just take a mixed twice daily) so don’t have to juggle like some do
If you do try MJ they will account for that to try and keep a good balance of your insulin , (reduce the insulin as you increase the Mounjaro)

with MJ initially they prescribe a introductory dose (for the first month) of 2.5mg,
then after a month it goes up to 5mg for another month,
then 7.5, then10, I’ve recently found out it can go to 15mg if needed

In my case I stayed on the 5mg for longer than the one month probably staying on the 5mg for about 4 months but a fortnight ago went up to the 7.5 and I’m staying on that next month them will review in the new year apparently
there’s a few other T2’s on here that take it, some through GP referral and some are self funding

 

[mattski]

I’ve got on fine with Mounjaro thanks @mattski
but obviously we are all different, maybe if your GP thinks it might help - hey maybe it will ?
I see like me your taking insulin (although I just take a mixed twice daily) so don’t have to juggle like some do
If you do try MJ they will account for that to try and keep a good balance of your insulin , (reduce the insulin as you increase the Mounjaro)

with MJ initially they prescribe a introductory dose (for the first month) of 2.5mg,
then after a month it goes up to 5mg for another month,
then 7.5, then10, I’ve recently found out it can go to 15mg if needed

In my case I stayed on the 5mg for longer than the one month probably staying on the 5mg for about 4 months but a fortnight ago went up to the 7.5 and I’m staying on that next month them will review in the new year apparently
there’s a few other T2’s on here that take it, some through GP referral and some are self funding

So my insulin regime is an ever changing situation as I'm very regularly on steroids ( currently on 8 a day plus inhaled).

It was the hospital consultant who mentioned MJ as 16 months ago I was in hospital for 10 days with bg of 2.1, weighed 4 stone less than I do now. I've since then had roughly 10/11 steroid doses which piles on the weight despite eating healthy.
I had another week in hospital recently with pneumonia and the steroids pushed my bg up to 25.
The steroids strip stomach lining and cause bleeding from the stomach so was unable to tolerate metaformin, gliclazide, linaglyptin and some others I can't remember.

When they spoke about MJ, the concerns were centred around the steroids and potential gastrointestinal effects of the MJ so they've held off for now but I'm always looking forwards instead of backwards so was curious about how you've tolerated.

Thanks for getting back to me 😎

 

[Leadinglights]

So my insulin regime is an ever changing situation as I'm very regularly on steroids ( currently on 8 a day plus inhaled).

It was the hospital consultant who mentioned MJ as 16 months ago I was in hospital for 10 days with bg of 2.1, weighed 4 stone less than I do now. I've since then had roughly 10/11 steroid doses which piles on the weight despite eating healthy.
I had another week in hospital recently with pneumonia and the steroids pushed my bg up to 25.
The steroids strip stomach lining and cause bleeding from the stomach so was unable to tolerate metaformin, gliclazide, linaglyptin and some others I can't remember.

When they spoke about MJ, the concerns were centred around the steroids and potential gastrointestinal effects of the MJ so they've held off for now but I'm always looking forwards instead of backwards so was curious about how you've tolerated.

Thanks for getting back to me 😎

 

[Leadinglights]

So my insulin regime is an ever changing situation as I'm very regularly on steroids ( currently on 8 a day plus inhaled).

It was the hospital consultant who mentioned MJ as 16 months ago I was in hospital for 10 days with bg of 2.1, weighed 4 stone less than I do now. I've since then had roughly 10/11 steroid doses which piles on the weight despite eating healthy.
I had another week in hospital recently with pneumonia and the steroids pushed my bg up to 25.
The steroids strip stomach lining and cause bleeding from the stomach so was unable to tolerate metaformin, gliclazide, linaglyptin and some others I can't remember.

When they spoke about MJ, the concerns were centred around the steroids and potential gastrointestinal effects of the MJ so they've held off for now but I'm always looking forwards instead of backwards so was curious about how you've tolerated.

Thanks for getting back to me 😎

My other half who is not diabetic was on IV steroids for 2 weeks and then oral ones for another 8 weeks and he put on a huge amount of weight probably 10kg which was a shame as he had worked really hard to lose the weight. He asked the gastro consultant if she had any tips for losing the weight again and she jokingly said if you find a way then let me know.