Hi all - T1 diagnosed 2 days ago...

[zx10pilot]

Well, where do I start?
Felt a bit tired for a couple of months, but put it down to working hard, then started get really insanely thirsty and lost a bit of weight. Wife finally convinced me to phone the Dr who invited me straight in for a checkup. She checked my blood and I was sitting at 31.8mmol/l. She was unsure if I was T1 or T2 (I'm mid 40s, 5ft10 and 13 stone) so took some blood for tests.
Was put straight on 12u lantus every night. And given 2 blood testers (one for glucose only & one that does ketones as well). That was 3 weeks ago.
I have been keeping a basic food diary & measuring glucose many times a day to try and get a handle on what affects my levels (spuds are really not good for me it seems) and my levels now fluctuate between about 5 & 11 depending on what I've eaten.
However, finally got GAD test results 2 days ago and it's been confirmed I'm type 1 - been told I will have to start using novarapid as well as the lantus to keep my levels more in check.
Wow!
From healthy to officially broken in a month.
Still trying to get my head round the shock as it is a bit overwhelming.
I don't want to let it get me down though, I can't not have diabetes so I will have to manage it. Just seems like such a momentous change in my everyday life.

 

[Northerner]

Hi zx10pilot, welcome to the forum 🙂 Sorry to hear about your diagnosis It can be a huge shock, overwhelming, and can take time to sink in - not sure my diagnosis has sunk in yet after 8 years! 😱 Like you, I went from healthy (I was due to run a marathon the week I was diagnosed, aged 49!) to suddenly feeling like a physical wreck 😱 Thankfully, I got used to things and was back running within a few weeks and ran the Great South Run four months after diagnosis, so there's no reason you can't get back to feeling fit and healthy again 🙂 The one good thing about diabetes is that it is a manageable condition with the right knowledge and a bit of extra planning and common sense. There will be times when you forget, or things go a bit wrong, and it's a very steep learning curve, but you sound like you have made a positive start to control it, and not let it control you. Do get a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - don't be misled by the title - this book is relevant to people of all ages, and covers all aspects of living with Type 1, it's an invaluable reference source. 🙂


It's good that your GP acted to get you on the insulin quickly and order the tests to determine type though - big round of applause to her! Often, adults can end up going for weeks and months on inappropriate medication because the GP thinks that only children can develop Type 1, so they persist in treating you as Type 2 - unsuccessfully

It sounds like you have made a good start to things, and brought your levels under good control - the novorapid will certainly help to improve things further. Have you been offered a course so you can learn how to match your insulin doses to the amount of carbs in your meals (known as 'carb counting')? If not, do ask your GP. Had any hypos yet? Make sure you have something sugary with you at all times - my hypo treatment of choice is jelly babies, some people prefer full sugar coke or similar.

Please let us know if you have any questions, there is a wealth of experience here, so whatever your query, someone should be able to help or offer suggestions 🙂

 

[Robin]

Hi, and welcome to the forum, I'm another late developer, I was 52 at diagnosis, and I was also fortunate-ish in that my GP realised I didn't fit the mould for Type 2 and referred me to the hospital where I eventually had the GAD test, it still took 3 months to get properly diagnosed and on to even basal insulin , so well done to your GP for being on the ball.
There's so much to get a grip on when you're first diagnosed, practical stuff as well as actually grappling with your blood sugars! Have you got a medical exemption card for free prescriptions? Have you notified the DVLA and do you test before driving?

 

[KookyCat]

Hello and welcome aboard
Another late bloomer here, diagnosis at 40 a couple of years ago now. Quite the shocker isn't it? At least you got the correct diagnosis quickly. Anyway it's really useful here so I hope you enjoy our merry little band 🙂

 

[stephknits]

Me to, although comparatively Young at 42 . Took me 10 months to get a correct diagnosis whilst I turned into a waif like version of my former self. It is a big shock and will take time to adjust, but you have found a great place for help and support, so welcome🙂🙂

 

[pottersusan]

Another 'late developer' (well, sort of!). It's a steep learning curve/cliff😱 and fills your brain to start with, but it does get easier.

 

[Ralph-YK]

Welcome from a T2

 

[trophywench]

Ooh - hiya Kwakker-man, from a Honda/Triumph pillion LOL

Er, you do know the testing before/whilst driving rules I hope? - my 'pilot' has had great difficulty keeping either bike upright with me hypo on the back and hanging off the side in the past and only by brute force brought us to a safe rest - so please please be even more careful now.

Hobie on here is still into his bike AFAIK but can't remember what it is - so no doubt he can offer advice if you need it.

 

[Stitch147]

Hi and welcome to the forum from an oddball MODY member.

 

[SB2015]

Yet another late bloomer, diagnosed with T1 in my 50s. A big surprise, a shock and lots to take on. But as Notherner said it is manageable.

Life generally requires a bit more planning and you need to make sure that you have a hypo treatment with you all the time. There are lots of people on here who will help with any questions, so just keep asking. No question in silly and no doubt someone else will be glad you have asked it as they will be interested in the answer.

Things may be a bit wobbly at the start, called the Honeymoon Period, whilst your remaining Beta cells get a rest with you injecting, and decide to join in again briefly and intermittently until they too pack up. So if it seems a bit difficult to get things under control it is no surprise. Just be patient with yourself and learn as much as you can.

 

[zx10pilot]

Thank you all for your warm welcome and your comments. It sounds as if I have been pretty well looked after compared to some of you on here.
Thankfully I was given my medical exemption form after my first appointment and have had many prescriptions in the last 3 weeks. I have also sent off my DVLA form, but then after reading on here I was surprised to discover that I would be issued with a 3 year license. Hmmm... oh, well, that was unexpected.
All the regs regarding driving have been explained (must be over 5 before driving and testing 2hrs before & then every 2hrs etc) and that makes absolute sense.
I haven't had a hypo yet but from what I gather it will happen at some point, just hope I'm ready for it with my jelly babies to hand!
I'm not going to let it spoil my life and definitely not going to stop riding. Just got to work out where to put my meter & jelly babies when I'm out on the bike...

Thanks for the recommendation of the book, it is now on order.

I do feel quite a bit better knowing there are people on here who are willing to answer newbie questions. I guess at some point everyone on here was just diagnosed.

I do have one question though, been given a BG*Star meter that has a USB socket but I cannot find software that works with it. The BGStar DMS software simply fails to install, and I was told about "Diasend", have downloaded and installed that but it doesn't seem happy on Windows 10 and never acknowledges the meter is connected. Anyone got any advice on how to get the all important numbers off my device?
Thanks again
zx

 

[Matt Cycle]

Welcome to the forum zx. 🙂 I've had T1 30 years now but you never stop learning. However for most things you'll soon get the hang of it.

I'm into my bikes as well but of the type where I'm the engine.

I haven't heard of that particular meter so I can't help with your meter and software problem but I'm sure there will be someone who can.

 

[trophywench]

Er, isn't the BG Star Apple compatible rather than Windows? - didn't it used to be called the iBG Star? If so - @everydayupsanddowns used to have one and he's very Apple compatible - Mike!! - you're needed ......

 

[everydayupsanddowns]

Er, isn't the BG Star Apple compatible rather than Windows? - didn't it used to be called the iBG Star? If so - @everydayupsanddowns used to have one and he's very Apple compatible - Mike!! - you're needed ......

The BG Star and iBG Star were different devices. I reviewed the iBG Star ages ago, but soon after it launched Apple changed the old 'dock connector' to the new 'lightning dock' so it has been rather scuppered since the iPhone 4s (iPhone 7 will be the Next Big Thing).

The iBG Star app was pretty good but the meter was hopeless for me so I stopped using it as soon as I'd reviewed it (http://www.everydayupsanddowns.co.uk/2012/03/ibgstar-review-blood-glucose-meter-for.html)

I'm afraid I don't have any experience of getting data out of a BG Star as I've never used one - though it doesn't look good:

The BGStar management software is ONLY compatible with Windows XP or Vista, not compatible with Windows 7 or 8.

http://starsystem.sanofi.ca/products/bgstar-software

 

[trophywench]

Ah right.

Nobody but nobody - surely ?? - will still have Vista or XP ?

(Think nursie wanted to get rid of useless old stock mate - so palmed it off on you cos she mis-read you completely and thought you wouldn't know any better?)

 

[Copepod]

For software / meter issues, my first point of contact is always the manufacturing company. They want you to be happy with their product, so that the NHS will continue to pay for test strips, so phone them and explain the problem. Probably they will send a replacement or fix.
As another late diagnosed T1D, welcome. Just carry on doing what you love, plus set some new challenges for yourself eg new sports, new travel destinations, new hobby, new pet etc. Your GP really sounds excellent - you're very lucky to have someone like that. Di ask about diabetes education courses, too. If there's a long wait in your area, then just ask here for details of online courses.

 

[TheClockworkDodo]

Hello zx10pilot, and welcome 🙂

I was 44 when I was diagnosed, so another late bloomer. It is a shock at first, but it sounds as though you have the right attitude - as you say, you just have to learn to manage it. With time it should go from feeling like a momentous change to feeling like a minor annoyance.

 

[zx10pilot]

Thanks again to you all. Knowing others have had this shock is helping me keep my chin up.
Had a surprise call from hospital this evening and I now have an appt with the diabetic dietitian tomorrow morning at "my" endocrine & diabetes clinic (not with my GP). Ihave been asked to bring food diary and the record of my bloods off my meter. When I explained the problem downloading the data she asked me for some details of it and she was going to look into it. So maybe you were right trophywench & I have been "sold a dud". Watch this space!

 

[zx10pilot]

After meeting with the dietitian today I now have a "Glucomen Lx PLUS", and a repeat prescription of 100 testing strips. This meter does Blood Glucose and also Ketones so is definitely more useful than the old one. Apparently this will work with "Diasend" and it means the nurses can access my readings at any time so I don't have to go to the clinic so often. Have registered my meter with the manufacturer and a USB lead is now on order.
Onwards and upwards 🙂
zx

 

[Northerner]

Sounds good, but I would push for a greater allocation of strips per prescription - 100 won't last very long. I do 6-8 tests per day, which is really not a lot of tests, so 100 strips would last me around 12-14 days and I'd be at the pharmacy every other week 😱 I persuaded my surgery to prescribe me 300 strips per prescription, which last me 6-8 weeks 🙂