New to the forum.

[Peely66]

Hi All,
I am new to the forum but with many years experience of living with diabetes. 30+ to be exact. I was diagnosed in 1989. I did the DAFNE course in 2006 which I found extremely useful. I've started going through the learning zone on the website as I would never be arrogant as to think I know it all and I think brushing up skills and learning about new developments is a good thing to do.
I think I may be experiencing some complications which has brought me here for a bit of support but I hope to be able to offer my support too! Looking forward to interacting!
Neil

 

[rebrascora]

Hi Neil and welcome
Good to have your extensive experience on the forum and hopefully you will learn some stuff here too.

Are you on MDI or a pump? Which insulin(s) do you use? Do you have Freestyle Libre?

I did DAFNE a year gone Oct and also found it really useful, but being a member of this forum has enabled me to learn on a daily basis, both by asking questions and also reading through other people's posts. There is a huge wealth of knowledge and experience from people who are living with the challenges of diabetes every day and finding new ways ways to deal with those challenges.

Sorry to hear you may be suffering with some diabetes complications. Feel free to ask or share information about that.

 

[Kaylz]

Hi there @Peely66 and welcome to the forum 🙂

Would you care to share what complications you think you are experiencing?

I'll share mines - Diagnosed November 2016, December 2016 diagnosed with diabetic macular oedema (believed to be caused by a plummet in hba1c) started injections that month, developed an eating disorder end of December 2016, October 2018 diagnosed with proliferative retinopathy and received lasering all despite good control

You didn't need to know all that of course but sometimes it makes people feel more at ease to open up
xx

 

[Peely66]

Sorry to hear of your vision problems @Kaylz and thanks for the welcome @rebrascora.

To answer your question @rebrascora I am on basal/bolus novorapid/lantus injecting using pens and finger prick blood tests. Last HbA1c 58 (still can't get used to this new way of measuring HbA1c!!)

I only heard about issues with plummeting blood sugars affecting vision a few years ago and it was not something mentioned when I was first diagnosed but then neither were the complications that I'm experiencing. I suppose if I'd given it some thought though I could have come to that conclusion myself.

My issues seem to be related to autonomic neuropathy rather than peripheral. Every time I go for a review my feet are fine, my kidney function is fine, I have some background retinopathy. Over the last 3 years started experiencing problems with acid reflux and have been on and off taking PPIs for that time, which could obviously be all sorts of things, but there are other issues like night-time sweating, dry mouth, feeling excessively rough after exercise (so rather than running I've gone back to walking) which made me think I might be starting with some autonomic issues. Mentioned this to the GP but they seem reluctant to refer at moment. In the absence of any real medical input at the moment I thought well, what can I do? I need to get that HbA1c down first off. So that's it in a nutshell.

 

[Flower]

Hello and welcome @Peely66 glad you've joined us 🙂

Have you been able to use Libre sensors at all as around the clock information on blood glucose is so helpful to target the times when things are drifting a bit higher than you'd like and that will help to reduce your HbA1c . It's worth asking if you fit the criteria at your clinic - or if you haven't used Libre before I think you can apply at the moment for a free sensor to try out Libre 2 provided you meet the criteria. The info is on the Abbotts Libre site across the top of the site page.

It is worrying when you start to notice things potentially going awry and it is hard at present to access clinics/referrals etc. I hope things settle for you.

 

[everydayupsanddowns]

Welcome to the forum @Peely66

I’ve just hit 30 years on the Diabetes Jab-ometer too.

Sorry to hear about the possible autonomic neuropathy. Hope you can get a referral to get some help and support with that.

@AJLang has lived with gastroparesis for a number of years which is related to the autonomic nervous system too I think.

Do you get seen at the hospital for your reviews as well as the GP? could well be worth chatting it through with a specialist consultant. I get seen 50:50, annual review and toe tickling at the GP surgery, and an annual pump clinic. I try to space them about 6 months apart, but they have a habit of drifting!

 

[Spozkins]

Hi @Peely66 and welcome aboard.

I too was diagnosed roughly the same time as you and wound my way to the forums fairly recently. There seem to be a fair few t1s here who have also been living with the disease for quite some time and others with complications too, so I'm sure you'll settle right in. I've found it particularly helpful because having been diagnosed for such a long time and 'managing' on my own I really was actually quite uneducated and through this forum, DAFNE and a freestyle libre am beginning to adapt and deal with my diabetes much more ergonomically.

I hope you find the forum as useful and look forward to hearing about your experience!

 

[SB2015]

Welcome to the forum @Peely66
Glad that you have found us, but sorry to read of your complications.

You mention that you want to try to reduce you HbA1c. What strategies had you thought about using? I was amazed at the information that a Libre sensor gave me, and used that to help me make changes to the timing of my Bolus injections before meals, and also reduced our portions sizes to reduce the height of any spikes. That increased the time in range for me, as well as reducing the HbA1c.

Have a read around and come back with any questions.
We also look forward to drawing on your experience.

 

[trophywench]

I am hoping (!) that the info the Libre 2 produces is a LOT more reliable (in terms of direct comparison to actual BG) to that which Libre has produced - it has reported SO many more hypos than I have actually ever had in the last almost 50 years I have hence been VERY reticent to accept what Libreview has told me so far.

My first Libre 2 due to be inserted/attached in 2 days time.

 

[Peely66]

Welcome to the forum @Peely66

I’ve just hit 30 years on the Diabetes Jab-ometer too.

Sorry to hear about the possible autonomic neuropathy. Hope you can get a referral to get some help and support with that.

@AJLang has lived with gastroparesis for a number of years which is related to the autonomic nervous system too I think.

Do you get seen at the hospital for your reviews as well as the GP? could well be worth chatting it through with a specialist consultant. I get seen 50:50, annual review and toe tickling at the GP surgery, and an annual pump clinic. I try to space them about 6 months apart, but they have a habit of drifting!

Hi Mike,
Hospital?! I haven't seen a specialist Dr about my diabetes for over 10 years now. When I look back at how things were when I was first diagnosed I was seeing a Specialist Dr at hospital diabetes clinic every 6 months. I guess I was living in a city but the drift towards clinics in GPs surgeries started before I left the city. Now I see a HCA once a year and a Dr just looks at the results and says "That's fine. No action". Sometimes it would be good to have a chat with someone with a bit more in depth expertise.

 

[Peely66]

Hello and welcome @Peely66 glad you've joined us 🙂

Have you been able to use Libre sensors at all as around the clock information on blood glucose is so helpful to target the times when things are drifting a bit higher than you'd like and that will help to reduce your HbA1c . It's worth asking if you fit the criteria at your clinic - or if you haven't used Libre before I think you can apply at the moment for a free sensor to try out Libre 2 provided you meet the criteria. The info is on the Abbotts Libre site across the top of the site page.

It is worrying when you start to notice things potentially going awry and it is hard at present to access clinics/referrals etc. I hope things settle for you.

Hi Flower,
Haven't used the libre sensors as I'm pretty sure I wouldn't fit the criteria and I certainly couldn't self fund at the moment but then I haven't checked my lottery numbers from Saturday yet!
I've been thinking about all that today and came to the conclusion that maybe if I only did it for 6 months of the year or less if I couldn't manage even that, then surely that's got to be useful. Hasn't it? The information that could be gained could be so useful. I remember a letter in the magazine of the BDA Balance many years ago. The writer was an engineer and lamenting the fact that it was so difficult to manage his diabetes and that in the engineering world there is a saying "Can't measure, can't control". That really stuck with me and these new flash devices and CGMs seem to help to overcome that issue of not being able to constantly measure.
Anyway I'll look into that free trial thanks for the heads up on it.

 

[Peely66]

Hi @Peely66 and welcome aboard.

I too was diagnosed roughly the same time as you and wound my way to the forums fairly recently. There seem to be a fair few t1s here who have also been living with the disease for quite some time and others with complications too, so I'm sure you'll settle right in. I've found it particularly helpful because having been diagnosed for such a long time and 'managing' on my own I really was actually quite uneducated and through this forum, DAFNE and a freestyle libre am beginning to adapt and deal with my diabetes much more ergonomically.

I hope you find the forum as useful and look forward to hearing about your experience!

Hi @Spozkins,
Wow just doing a bit of mooching about and reading posts I realise how little I know about the finer points of my own control! The Libre does seem key to that. I'm going to get on that free trial and see how I get on.