Newbie saying Hi!

[Berti3]

Hi!

Not a newbie to Type 2, been diagnosed for 20 years, but new to the forums. Finally succumbed to needing insulin injections this year which unlocked a whole new curve of learning. Hba1c in March was 91, today it was 55! I may have let out a whoop.

Anyway, pleased to meet you all!

 

[Inka]

Welcome @Berti3 🙂

 

[rebrascora]

Hi and welcome from me too.

Congratulations on your HbA1c reduction. 55 is a great result considering that you are so new to insulin. I hope that hasn't involved too many hypos.
Which insulin(s) are you using and do you have the Freestyle Libre system for monitoring your levels or some other Constant Glucose Monitoring system (CGM) or are you just finger pricking?

I see from your profile that you must have been about 29yrs old at diagnosis which is quite young. Did you have obvious Type 2 risk factors like being overweight or inactive or did they just assume you were Type 2 because you were not a child? Some GPs and nurses wrongly believe that Type 1 only develops in children or young adults, so if you are a mature adult, they just assume you are Type 2 and we have many members of the forum who were misdiagnosed as Type 2 because they were not children when they developed Type 1. I was 55years old. Unfortunately Type 1 can have quite a slow onset in adults and so it can often mimic Type 2 and often respond to Type 2 meds and lifestyle changes for a number of years. However Type 2 diabetes can eventually require insulin particularly if you haven't made dietary/lifestyle changes in the early years of diagnosis, so not suggesting you may be misdiagnosed but just that it may be something to consider, particularly if you only need small doses of insulin.

 

[Berti3]

Hi and welcome from me too.

Congratulations on your HbA1c reduction. 55 is a great result considering that you are so new to insulin. I hope that hasn't involved too many hypos.
Which insulin(s) are you using and do you have the Freestyle Libre system for monitoring your levels or some other Constant Glucose Monitoring system (CGM) or are you just finger pricking?

I see from your profile that you must have been about 29yrs old at diagnosis which is quite young. Did you have obvious Type 2 risk factors like being overweight or inactive or did they just assume you were Type 2 because you were not a child? Some GPs and nurses wrongly believe that Type 1 only develops in children or young adults, so if you are a mature adult, they just assume you are Type 2 and we have many members of the forum who were misdiagnosed as Type 2 because they were not children when they developed Type 1. I was 55years old. Unfortunately Type 1 can have quite a slow onset in adults and so it can often mimic Type 2 and often respond to Type 2 meds and lifestyle changes for a number of years. However Type 2 diabetes can eventually require insulin particularly if you haven't made dietary/lifestyle changes in the early years of diagnosis, so not suggesting you may be misdiagnosed but just that it may be something to consider, particularly if you only need small doses of insulin.

Hi Barbara

Thank your for your reply, yes I was diagnosed quite young with typical symptoms, peeing lots, thrush, wounds on my legs that wouldn't heal and generally feeling unwell. At the time of diagnosis I was 18 stone and ate what I wanted, I had a very sweet tooth. Long story short I was rushed to hospital with heart palpitations and a finger prick reading of 25. It was the hospital that diagnosed me as type 2 and started me on metformin and a referral to a dietician. I initially controlled my diabetes well but in hindsight I didn't make the right lifestyle changes and eventually stopped testing and stopped having blood tests. Stupid I know.

I went on like this for years until the doctor added gliclazide to my diet of pills which was when I first started experiencing hypos. Again, I naively thought I was ok because the doc had put me on extra pills, again everything lapsed and I continued living like I wasn't a diabetic!! The only good thing that came out of my initial diagnosis was exercise, I found a love of cycling and I think its this exercise that helped my levels and held of any nasty complications.

It wasn't until I stopped getting hypos (normally had 2 or 3 a month) on the Gliclazide that I thought something had changed and I better check it out. I was also getting headaches and blurred vision as well.

This was when my Hba1c was 91and it was this point my doctor put me on NovoMix 30. He started me on 5 units twice a day which did nothing and in true style I couldn't get a DN appointment for 3 months! so I researched the hell out what I do and increased my dose every 3 days until I have now settled on 18 units in the morning and 20 before my evening meal. This gives me a rough average on 6.7mmol over 14 days. I have experience hypos but recognise the symptoms early and attack the jelly babies. I only get hypos if I'm more active than usual.

I have been using Libre 2 for a couple of weeks and I'm not that convinced by it at the moment. I understand all the nuances between the Libre and a finger prick test and I think I am just getting used to the readings and how to interpret them. I will persevere. Before Libre I was testing a minimum 6 times a day on the finger test and my fingers were sore! The Libre has helped with the frequency I now do a finger prick test which is a relief.

Your point about misdiagnosis is an interesting one, I just took what the hospital was telling me as gospel, however the DN I saw a couple of weeks ago suggested I get a blood test again to determine if that diagnosis is accurate as the DN was a little surprised I was type 2 considering how active I am now and 4 stone lighter. At the moment I don't feel the need to be labelled Type 1 or 2, all I know is that the insulin is currently working for me so Im not sure ill bother to find out. I don't have an erratic lifestyle and I eat at regular times to a strict low carb diet so the NovoMix 30 works for me. I am now for the first time in 20 years controlling my diabetes instead of it controlling me.

Has my recent journey been hard? absolutely, getting control of this has been the hardest thing I have ever had to do. The thing I am proud of is that I can now go to the cupboard where the chocolate is and not fancy anything. I'd prefer a carrot now! Todays news of my Hba1c coming in at 55 tells me I am going in the right direction but need to tighten up a little more.

Sorry I just realised I appear to have typed up a ridiculously long reply!

 

[rebrascora]

It is an interesting story, so please don't apologise for writing too much. More info is interesting, too little can be very frustrating!

I can see how they could easily assume you were Type 2 and I understand how you may not appreciate the difference a Type 1 diagnosis can make in that it opens doors to better support and technology. Not sure if Libre is on prescription or you are self funding but if the latter, that alone can make £100 a month worth of difference. Unfortunately, 20 years after diagnosis, the Type 1 tests (C-peptide and antibody tests) are often less clear cut/reliable than at initial diagnosis or during the first few years, because antibodies can diminish over time and so can insulin production which is what C-peptide measures, particularly if dietary changes have not been made over the years, as the beta cells, which produce insulin, can gradually "wear out" due to over stimulation. Gliclazide is suspected to do that as well as the insulin resistance associated with Type 2. Things that point towards Type 1 are your relatively low insulin doses and the sudden onset of symptoms at initial diagnosis.

Great that you can see a positive from it all that it got you into cycling and I am sure that has helped a lot, although may have also been responsible for some of those hypos if you weren't adjusting the Gliclazide. Exercise is one of the things we have to factor in when using medication like Gliclazide or insulin.

I see you are currently on fixed doses of mixed insulin, which is a bit of an old fashioned insulin regime and means you have to be quite regimented with your meals and eating times. If that works for you then that is great. Nothing wrong with old fashioned in itself but many of us would struggle to maintain the routine required. As a result there is what is called a basal/bolus or Multiple Daily Injections (MDI) regime where we inject the slow releasing insulin (basal) once or twice a day to cover the glucose trickled out from our liver which is a bit like a back up battery to keep our organs supplied with glucose when there is no food digesting.... and a bolus insulin which we inject with each meal and calculate the dose depending upon what we are going to eat.... which involves carb counting. This means that we can skip a meal of have a special larger meal for special occasions or have an afternoon scone or cake without having to worry that our levels will go through the roof. It also enables us to inject extra fast acting insulin to bring our levels down if they go very high which we call a "correction" This can be particularly important if we are ill. Anyway, just wanted to outline some of the benefits of MDI over mixed insulin in case it might suit your lifestyle better or you felt you were restricted by the rigid regime required for mixed insulin. MDI does take quite a bit more thought but a bit like learning to drive a car, you gradually do a lot of it automatically as you become more experienced.

Anyway, well done on getting your head around managing your diabetes and taking the reins. It sounds like you are in a good place now and I hope you can manage to maintain that. I too was a sugar addict and following a low carb way of eating has really helped me gain control over it too. I do still keep chocolate in the cupboard but it is now 70% dark chocolate and I only have half a square at a time with a spoonful of crunchy nut peanut butter and that is enough.

 

[everydayupsanddowns]

Thanks for sharing your story @Berti3

And congratulations on getting insulin to work so well for you.

Whoop indeed!