Newbie to forum

[Cookie12]

Diagnosed type 1 almost 9 years ago at age 45, was a bit of a shocker, current hba1c about 51-55, was quite a lot higher when 1st diagnosed.
Will be interesting to read other people's experiences of this horrible disease and maybe a few laughs along the way.

 

[SB2015]

Welcome to the forum @Cookie12 from another late starter (53 at diagnosis 12 years ago)
As you say it is a shocker but I learnt loads from others on here, as well as getting a lot of support from people who ‘get it’.

How are you managing at present?
Are you able to work at present?

Keep in touch, and do ask absolutely any questions that you have.
Nothing is considered silly on here.

 

[Ralph-YK]

Welcome to the forum Cookie.

 

[everydayupsanddowns]

Welcome to the forum @Cookie12

We have quite a few diagnosed in adulthood on the forum - so you won’t be at all out of place being Dx with T1 in your mid 40s.

What are your current pancreas impersonation tools of choice? Pens? Pump? Any fancy gadgets? Sensors?

Is there anything particularly irritating or annoying that your diabetes is currently doing?

 

[Cookie12]

SB2015, I am working, only thing that changed for me was when my pancreas finally stopped working and I went onto novo rapid and lantus and losing my hgv/psv licenses for 6months, dvla every year is a bit of a pain.
I've recently bought myself a Nexus glucorx to use when I need to go on a long journey, my prescribed machine is a Accu-Chek Aviva expert as I carb count.
As for how I'm managing, having an excellent wife really helps, I do take it seriously and I do live life as normal as possible.

 

[KARNAK]

Hello @Cookie12 welcome to the forum.🙂

Plenty of laughs on the forum, yes DVLA can be a pain at times but it can be sorted normally.
I was 63 when DX with a HbA1c of 156 and had it down to 48 in 3 months mostly following advice on the forum, now 32.
Trawl through the forum we don`t only deal with diabetes although that is our main topic.

So glad you have a helpful wife and between you can manage your big D, do you stay in touch with your DSN?.

Stay safe mate keep in touch.🙂

 

[Ditto]

Hello and welcome to the forum. 🙂 What a shock to be diagnosed at that age. Glad you have family to help.

 

[rebrascora]

Hi Cookie and welcome from me too.

Not sure if you are aware but there is a really tremendous bit of kit called the Freestyle Libre manufactured by Abbott. I have just started self funding it and what a huge difference it makes . Not cheap but it is an absolute game changer and it can be obtained on prescription in certain circumstances. Like you, I was a late starter at 55yrs old (last year) and it takes a bit of getting your head around but this forum has been invaluable in learning how best to manage it and all the things which are available, tips and tricks etc. I hope you find it equally helpful.

Interestingly I was provided with a Nexus Gluco RX at diagnosis by the practice nurse. What is it about it that you find better than the Accu-chek Aviva? As far as I know it doesn't have the facility to test Ketones and in our area you need to have a meter which will do both, so I was then prescribed the Caresens Duo on the say so of my consultant. I am also on the list to have the Freestyle Libre prescribed but everything is on hold with Covid, so I decided to self fund in the meantime and so pleased I did.

 

[Cookie12]

Hi Cookie and welcome from me too.

Not sure if you are aware but there is a really tremendous bit of kit called the Freestyle Libre manufactured by Abbott. I have just started self funding it and what a huge difference it makes . Not cheap but it is an absolute game changer and it can be obtained on prescription in certain circumstances. Like you, I was a late starter at 55yrs old (last year) and it takes a bit of getting your head around but this forum has been invaluable in learning how best to manage it and all the things which are available, tips and tricks etc. I hope you find it equally helpful.

Interestingly I was provided with a Nexus Gluco RX at diagnosis by the practice nurse. What is it about it that you find better than the Accu-chek Aviva? As far as I know it doesn't have the facility to test Ketones and in our area you need to have a meter which will do both, so I was then prescribed the Caresens Duo on the say so of my consultant. I am also on the list to have the Freestyle Libre prescribed but everything is on hold with Covid, so I decided to self fund in the meantime and so pleased I did.

Hi rebrascora, I only bought the Nexus to use so I didn't use up all of my Accu-Chek test strips. As for Freestyle Libre, I'm a underpaid civil servant so the cost would be prohibitive.

 

[rebrascora]

Have you explored the possibility of getting it prescribed? Shame that you bought such an expensive meter just because you don't get enough test strips prescribed.... I know that feeling! There are much cheaper BG meters with low cost strips which will do basic BG testing (SD Gluco Navii or the Spirit Healthcare Tee2 test strips are £8 for a pot of 50) but they don't have all the bolus calculator etc functions, so I suppose it depends what you want it for.

 

[Bruce Stephens]

Have you explored the possibility of getting it prescribed? Shame that you bought such an expensive meter just because you don't get enough test strips prescribed.... I know that feeling!

If you're using lots of test strips (and your doctors agree that you need to do that, which shouldn't be much of an issue but sadly sometimes is) that alone should be sufficient to get Libre prescribed.

 

[Ralph-YK]

Hi rebrascora, I only bought the Nexus to use so I didn't use up all of my Accu-Chek test strips. As for Freestyle Libre, I'm a underpaid civil servant so the cost would be prohibitive.

As an insulin user, (therefore at risk of hypo) you should be getting enough strips prescribed. Have you got onto the GP practice about it?
DVLA has rules about driving, testing & BG level, so you really need the strips to be legal.
Are you under a hospital? I've heard DSN nurses at the hospital can help with GP practice issuing prescriptions for strips.

There are much cheaper BG meters with low cost strips which will do basic BG testing (SD Gluco Navii or the Spirit Healthcare Tee2 test strips are £8 for a pot of 50) but they don't have all the bolus calculator etc functions, so I suppose it depends what you want it for.

I got a SD Code Free (£13?) 3-4 years ago. Strips for that are £8 for 50, no postage. There's a newer model I believe.

 

[Cookie12]

Have you explored the possibility of getting it prescribed? Shame that you bought such an expensive meter just because you don't get enough test strips prescribed.... I know that feeling! There are much cheaper BG meters with low cost strips which will do basic BG testing (SD Gluco Navii or the Spirit Healthcare Tee2 test strips are £8 for a pot of 50) but they don't have all the bolus calculator etc functions, so I suppose it depends what you want it for.

The meter only cost £30 with 10 strips plus an additional 50 strips.

 

[trophywench]

B*gger how much it does or doesn't cost - NO T1 in the UK should need to pay for a meter or strips - and especially one who is a professional driver who the whole world wants to test their BG more frequently than a pen pusher.

Neither of the meters measure ketones. The 'Expert' does however calculate boluses if you program it with your carb ratio and tell it the carb value of the food/drink.

 

[Cookie12]

Thanks for all your comments and advice, I suppose I'm quite lucky in that my diabetes is under control, I do have the rare hypo, mainly due to being active, my main frustration is high (blood)/hypers even though I eat sensibly and don't snack, hopefully when we can all physically see our doctors and consultants changes can be made.

 

[Cookie12]

B*gger how much it does or doesn't cost - NO T1 in the UK should need to pay for a meter or strips - and especially one who is a professional driver who the whole world wants to test their BG more frequently than a pen pusher.

Neither of the meters measure ketones. The 'Expert' does however calculate boluses if you program it with your carb ratio and tell it the carb value of the food/drink.

Jenny, luckily I'm not on the public roads so don't need to test as often as if I was, I bought the meter after a 9 hour shared drive to Scotland for a funeral, the wife being the cook driver.
You're right though, there should be a level playing field for funding and prescriptions.

 

[stephknits]

Hi and welcome from another late starter at 42, 6 years ago.

 

[SB2015]

SB2015, I am working, only thing that changed for me was when my pancreas finally stopped working and I went onto novo rapid and lantus and losing my hgv/psv licenses for 6months, dvla every year is a bit of a pain.
I've recently bought myself a Nexus glucorx to use when I need to go on a long journey, my prescribed machine is a Accu-Chek Aviva expert as I carb count.
As for how I'm managing, having an excellent wife really helps, I do take it seriously and I do live life as normal as possible.

You should be able to get whatever strips you need in prescription. I was told I test too much at the start by my GP. He had to listen to my explanation of why I was testing when I did!! Now whatever I ask for her just says yes!! I get two months supply, but can reorder when necessary. I used the accu check aviva expert before I got my pump and found it great.

If you are testing eight or more times a day (which would be pretty normal anyway) that is one of the criteria for getting a Libre.

 

[SB2015]

Ps I am another even later starter (53)

 

[everydayupsanddowns]

Hope you get your strip allowance increased @Cookie12 - there should be no limit on your strips, and while occasionally surgeries mistakenly make sweeping changes to all people with diabetes on their books, or other similar mistakes - usually a brief chat with a GP (unfortunately a conversation with the receptionist is not usually enough).

NICE guidelines demonstrated with a new cost-effectiveness calculation that fewer test strips were less cost-effective, and anything up to 8-10x a day, where needed, provided better outcomes which more than outweighed the additional expense.

Plus as @SB2015 points out, once you demonstrate need for 8x a day, you qualify for Libre under mandatory national guidance.