mashedupmatt
Moderator
- Relationship to Diabetes
- Type 1
I knew it was close so had a look on the NHS app and it is today!
Not a significant milestone, I know, and not even close to many people on here but it has been quite a journey. I thought I'd share it as it may help others:
Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for Psoriasis) that the weight was falling off me (In the end I had lost 2 1/2 stone over the course of a month) so she effectively ruled out Type 2 and ordered an auto-antibody test - was put on Metformin in the mean time whilst waiting for the results (which did precisely nothing for me other than give me dreadful stomach problems which I won't elaborate on!)
3 weeks later and the results were in - positive for IA-2 and ZnT8 auto-antibodies and now officially Type 1 - had an appointment made for the next day at the hospital to see a DSN (My doctor was superb) - the appointment the following day was a bit of a blur and SO much to try and take in - was immediately given a Libre 2 and a prescription for 2 lots of insulin (Lantus and Novorapid) - I knew that I just had to take the grey one (Lantus) once a day and the Blue one (Novorapid) when I ate - not much more info than that but that they would see me again in 6 weeks or so.
I spent the next 6 weeks trying to avoid having the blue one as I was scared of it - was eating hardly any carbs and was actually losing more weight (not good as I was already underweight) - was told at my next DSN appointment that my Libre data was very good (mainly because I wasn't eating properly though!) but they were worried about my weight - so had to go back again 2 days later to see a Dietician - she was fantastic - swapped me on to a Novopen Echo Plus so that I could dial up 1/2 units and given some basic carb counting techniques - and told to EAT MORE! Saw her twice again over the course of about a year and also had an appointment with a consultant (who didn't turn out to be a real consultant, just a locum, who even at this early stage in my journey, seemed to know less about Diabetes than me - disappointing to say the last (I've still never seen a "proper" one)
Muddled along still taking my Lantus and between 1 and 2 units of Novorapid before meals (still didn't really have a clue what I was doing) - although my Libre data was still good I was totally winging it - I then discovered this forum at the end of 2023 and what an eye-opener - reading through multiple threads I realised I needed to get a grip on things as I was avoiding going out, and my quality of life was not great (Diabetes was controlling me) - the forum empowered me to learn more about my condition (Bought the "Think like a Pancreas" book after recommendations here, which is fantastic if you haven't read it) - I did all of the Learning Zone modules that were relevant and found them very useful - but I was still winging it with regards to my insulin doses and food in particular (I was eating the same things all the time as I knew how much I could get away with taking)
Fast Forward to February 2024 I was lucky enough to get a place on a DAFNE Course starting on my 49th birthday - another real eye-opener - I finally got to meet people like me - I was staggered at how everyone was so different in terms of HbA1c and Total Daily Doses (I was taking barely 12 units combined today and some were taking 50+) - It was clear to the DSNs on the course that Novorapid was not really working for me - it was sending me too low even 4hrs+ after food so was switched to Fiasp - I saw an immediate improvement in this - they also thought that a split basal would be better than Lantus once a day so switched me to Levemir - another great call - the main thing I took out of the course is to not be scared of food/insulin and to give me the confidence to adjust dosages safely - my ICR was set at 1 unit to 20g of carbs as I was very insulin-sensitive and was still in the dreadfully named "Honeymoon Period"
Over the course of the next 6 months it was clear to me that I needed to change and tweak the ratios as my homegrown insulin was dwindling - I gradually changed from 1:20 down to 1:15 and 1:10 as well as increasing my Basal and that I needed more for breakfast/lunch than dinner - again, reading others experiences on here helped me gain that confidence and also gave me the confidence to start posting here too - And the main thing was that I was no longer winging it, and Diabetes was no longer controlling me.
As the forum had helped me so much with education that no text books or Healthcare professionals could give, I then wanted to give something back so applied to become a forum host which was a very smooth process (apart from the DBS check (of which I already have 2!) - how many people have their full name on their utility bills?!!?) - I am now a Moderator - thank you to Diabetes UK for giving me the opportunity to volunteer for such a wonderful organisation and if anyone is considering helping out, I would highly recommend it.
So that's my story - I hope it may help others as the fantastic members here have helped me - so thank you so much all forum members and Diabetes UK - you have got me through my first 3 years and I couldn't have done it without you
Matt
Not a significant milestone, I know, and not even close to many people on here but it has been quite a journey. I thought I'd share it as it may help others:
Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for Psoriasis) that the weight was falling off me (In the end I had lost 2 1/2 stone over the course of a month) so she effectively ruled out Type 2 and ordered an auto-antibody test - was put on Metformin in the mean time whilst waiting for the results (which did precisely nothing for me other than give me dreadful stomach problems which I won't elaborate on!)
3 weeks later and the results were in - positive for IA-2 and ZnT8 auto-antibodies and now officially Type 1 - had an appointment made for the next day at the hospital to see a DSN (My doctor was superb) - the appointment the following day was a bit of a blur and SO much to try and take in - was immediately given a Libre 2 and a prescription for 2 lots of insulin (Lantus and Novorapid) - I knew that I just had to take the grey one (Lantus) once a day and the Blue one (Novorapid) when I ate - not much more info than that but that they would see me again in 6 weeks or so.
I spent the next 6 weeks trying to avoid having the blue one as I was scared of it - was eating hardly any carbs and was actually losing more weight (not good as I was already underweight) - was told at my next DSN appointment that my Libre data was very good (mainly because I wasn't eating properly though!) but they were worried about my weight - so had to go back again 2 days later to see a Dietician - she was fantastic - swapped me on to a Novopen Echo Plus so that I could dial up 1/2 units and given some basic carb counting techniques - and told to EAT MORE! Saw her twice again over the course of about a year and also had an appointment with a consultant (who didn't turn out to be a real consultant, just a locum, who even at this early stage in my journey, seemed to know less about Diabetes than me - disappointing to say the last (I've still never seen a "proper" one)
Muddled along still taking my Lantus and between 1 and 2 units of Novorapid before meals (still didn't really have a clue what I was doing) - although my Libre data was still good I was totally winging it - I then discovered this forum at the end of 2023 and what an eye-opener - reading through multiple threads I realised I needed to get a grip on things as I was avoiding going out, and my quality of life was not great (Diabetes was controlling me) - the forum empowered me to learn more about my condition (Bought the "Think like a Pancreas" book after recommendations here, which is fantastic if you haven't read it) - I did all of the Learning Zone modules that were relevant and found them very useful - but I was still winging it with regards to my insulin doses and food in particular (I was eating the same things all the time as I knew how much I could get away with taking)
Fast Forward to February 2024 I was lucky enough to get a place on a DAFNE Course starting on my 49th birthday - another real eye-opener - I finally got to meet people like me - I was staggered at how everyone was so different in terms of HbA1c and Total Daily Doses (I was taking barely 12 units combined today and some were taking 50+) - It was clear to the DSNs on the course that Novorapid was not really working for me - it was sending me too low even 4hrs+ after food so was switched to Fiasp - I saw an immediate improvement in this - they also thought that a split basal would be better than Lantus once a day so switched me to Levemir - another great call - the main thing I took out of the course is to not be scared of food/insulin and to give me the confidence to adjust dosages safely - my ICR was set at 1 unit to 20g of carbs as I was very insulin-sensitive and was still in the dreadfully named "Honeymoon Period"
Over the course of the next 6 months it was clear to me that I needed to change and tweak the ratios as my homegrown insulin was dwindling - I gradually changed from 1:20 down to 1:15 and 1:10 as well as increasing my Basal and that I needed more for breakfast/lunch than dinner - again, reading others experiences on here helped me gain that confidence and also gave me the confidence to start posting here too - And the main thing was that I was no longer winging it, and Diabetes was no longer controlling me.
As the forum had helped me so much with education that no text books or Healthcare professionals could give, I then wanted to give something back so applied to become a forum host which was a very smooth process (apart from the DBS check (of which I already have 2!) - how many people have their full name on their utility bills?!!?) - I am now a Moderator - thank you to Diabetes UK for giving me the opportunity to volunteer for such a wonderful organisation and if anyone is considering helping out, I would highly recommend it.
So that's my story - I hope it may help others as the fantastic members here have helped me - so thank you so much all forum members and Diabetes UK - you have got me through my first 3 years and I couldn't have done it without you
Matt
