Stunned to be rediagnosed today

[mrsmusic]

Hi. I was diagnosed t2 in Jan 2016 and did really well. However in past few months it's been harder to keep sugars down in spite of doing pretty much everything by the book.My diabetic educator got suspicious and asked for GAD tests. Hey presto, my gp just told me it looks like type 1a after all. I'm totally gutted and overwhelmed. I've worked soo hard these past 2 years towards something i thought i could control, but it appears not. V upset tonight, and frightened.

 

[Brunneria]

Look, this may not be any consolation at all, but believe me when I say that a clear diagnosis of T1 rather than T2 means that they won't waste months or years escalating you through a series of increasingly ineffective T2 drugs, when they can go straight to insulin, when you need it.

Also, being T1 doesn't mean you can't control your diabetes. It just means that you can achieve that control using different means.

Have a hug.

 

[mrsmusic]

Look, this may not be any consolation at all, but believe me when I say that a clear diagnosis of T1 rather than T2 means that they won't waste months or years escalating you through a series of increasingly ineffective T2 drugs, when they can go straight to insulin, when you need it.

Also, being T1 doesn't mean you can't control your diabetes. It just means that you can achieve that control using different means.

Have a hug.

Thank you. Yes that does make sense. I think I'm just in shock tonight, but you're right, at least they know properly what we're dealing with now.

 

[Juicyj]

Hello @mrsmusic The good news is that you've been picked up and something can be done now to get your bg levels under control, I appreciate it might feel frightening for you at the moment, but do talk to others about how your feeling, it will get alot better, I remember my fears on diagnosis too 6 years ago, it's obviously much easier now, but it helped to learn as much as I could, knowledge will empower you and help build your confidence, there's always someone about for a chat if you need to off load, best wishes J

 

[Circuspony]

At least they got you now and can start you on the right treatment. Taking insulin becomes routine and you'll get the hang of it - plus once those blood sugars are under control you'll feel loads better.

 

[Japes]

Hi. I was diagnosed t2 in Jan 2016 and did really well. However in past few months it's been harder to keep sugars down in spite of doing pretty much everything by the book.My diabetic educator got suspicious and asked for GAD tests. Hey presto, my gp just told me it looks like type 1a after all. I'm totally gutted and overwhelmed. I've worked soo hard these past 2 years towards something i thought i could control, but it appears not. V upset tonight, and frightened.

That's pretty much my timeline from initial Type 2 diagnosis to LADA - both my current GP and I were getting suspicious as it was utterly clear I was doing everything in my power to keep control but sugars were just going up and up.

Now, 2 months down the line from the first day in the clinic plus the switch to insulin it's been so much easier and far better controlled.

I was initially furious I'd worked so hard to keep under control, (as well as fed up with a previous GP telling me I wasn't trying hard enough with either diet or exercise) but it quickly switched to a massive sense of relief to learn it wouldn't matter how hard I tried anymore if the wrong treatment was being followed.A

So much of what I learnt in the two years of diet/meds/exercise control is still really useful and it's not been a waste of time. There are some re-adjustments on-going, but I'm getting there with them.

Be kind and gentle with yourself - it will be OK once you've got used to it!

 

[catapillar]

@mrsmusic have you actually been prescribed insulin for your diabetes? Do you have the contact details for a hospital DSN to help you with sarting off on insulin?

The book "think like a pancreas" sets out the basics of what you need to know to manage type 1 so it's worth getting hold of a copy of that.

 

[NicoleC1971]

Hi. I was diagnosed t2 in Jan 2016 and did really well. However in past few months it's been harder to keep sugars down in spite of doing pretty much everything by the book.My diabetic educator got suspicious and asked for GAD tests. Hey presto, my gp just told me it looks like type 1a after all. I'm totally gutted and overwhelmed. I've worked soo hard these past 2 years towards something i thought i could control, but it appears not. V upset tonight, and frightened.

As others have said, it is good to know and I think if you have adapted to all of those good new habits they will definitely stand you in good stead with learning the new tricks. But it is very normal to feel frustrated by the misdiagnosis which seems to be all to common with this type and when you emerge from the shock I am sure you will get the hang of the new things because you have before.

 

[mrsmusic]

@mrsmusic have you actually been prescribed insulin for your diabetes? Do you have the contact details for a hospital DSN to help you with sarting off on insulin?

The book "think like a pancreas" sets out the basics of what you need to know to manage type 1 so it's worth getting hold of a copy of that.

Hi. No, i only got my results yesterday so am waiting on a referral to an endocrinologist. I have a great diabetic educator (I'm in oz) who picked this up. I guess I'm really knocked sideways as I'd really embreced being a t2 over the last 2 years and am now fitter and slim etc. Just feels v confusing all over again! Thankyou for taking the time.

 

[mrsmusic]

That's pretty much my timeline from initial Type 2 diagnosis to LADA - both my current GP and I were getting suspicious as it was utterly clear I was doing everything in my power to keep control but sugars were just going up and up.

Now, 2 months down the line from the first day in the clinic plus the switch to insulin it's been so much easier and far better controlled.

I was initially furious I'd worked so hard to keep under control, (as well as fed up with a previous GP telling me I wasn't trying hard enough with either diet or exercise) but it quickly switched to a massive sense of relief to learn it wouldn't matter how hard I tried anymore if the wrong treatment was being followed.A

So much of what I learnt in the two years of diet/meds/exercise control is still really useful and it's not been a waste of time. There are some re-adjustments on-going, but I'm getting there with them.

Be kind and gentle with yourself - it will be OK once you've got used to it!

Oh thankyou. Can't believe how similar our stories are! I've had nothing but support from my medical people as they know how hard I've worked (with normally great results). I just started getting higher morning readings which i couldn't control and my hbalc was nudging up, while i was working harder and harder at exercise etc. It's good to hear a story just like mine as i don't know anyone in my situation. Many thanks!

 

[mrsmusic]

At least they got you now and can start you on the right treatment. Taking insulin becomes routine and you'll get the hang of it - plus once those blood sugars are under control you'll feel loads better.

Thankyou. I guess I've just got to accept that this has happened. .it's just the opposite to where i set out to be when diagnosed t2 2 years ago. I aimed to be off meds, losing weight quickly, getting fitter etcetc. Instead, i did all that and ended up on higher medications. ..then this. Bit of a blow, though i do understand it's out of my control (which is some comfort as there's always that nagging little voice of self blame with me). Appreciate the support v much.

 

[Daibell]

I agree with @Brunneria. It's much better to know you are T1 than stay in the twilight world of 'T2' for years with increasingly ineffective tablets and GPs telling me to have a healthy balanced diet and stop starving myself. Insulin is a nuisance rather than a problem and the great thing is that it works and it is under your control. You soon get used to it and I was grateful when it was finally prescribed.

 

[NewTD2]

I was put on Insulin for 13 days and it was an absolute shock and quite a horrific experience.

However looking back now, I realised it was actually the BEST THING that ever happened to me because it normalised my blood glucose levels and somewhat revived my pancreas.

I am now just taking x1 Metformin per day but if my pancreas would eventually give up on me in the future, I will not be frightened and would welcome Insulin.

Insulin is a clean medicine and it's infact our best friend.....glucose is the enemy!!!

 

[NewTD2]

Hi. I was diagnosed t2 in Jan 2016 and did really well. However in past few months it's been harder to keep sugars down in spite of doing pretty much everything by the book.My diabetic educator got suspicious and asked for GAD tests. Hey presto, my gp just told me it looks like type 1a after all. I'm totally gutted and overwhelmed. I've worked soo hard these past 2 years towards something i thought i could control, but it appears not. V upset tonight, and frightened.

What is your latest HBA1C ?

 

[mrsmusic]

Hello @mrsmusic The good news is that you've been picked up and something can be done now to get your bg levels under control, I appreciate it might feel frightening for you at the moment, but do talk to others about how your feeling, it will get alot better, I remember my fears on diagnosis too 6 years ago, it's obviously much easier now, but it helped to learn as much as I could, knowledge will empower you and help build your confidence, there's always someone about for a chat if you need to off load, best wishes J

thankyou. I feel much better for the online support after such a shock. My latest hbalc was 6.7 but there's been ongoing issues with raised morning readings.

 

[mrsmusic]

What is your latest HBA1C ?

6.7....but I've had to go onto higher medications in past 9 months to keep things right. It's been harder and harder ...and i guess we know why now, which is a small comfort as I'm big on self blame!

 

[mrsmusic]

I agree with @Brunneria. It's much better to know you are T1 than stay in the twilight world of 'T2' for years with increasingly ineffective tablets and GPs telling me to have a healthy balanced diet and stop starving myself. Insulin is a nuisance rather than a problem and the great thing is that it works and it is under your control. You soon get used to it and I was grateful when it was finally prescribed.

Thankyou for your thoughts.I have been getting increasingly frustrated that my efforts seem to get me nowhere. All's well when I'm active (most of the time as a busy music/dance teacher), but as soon as i rest my bs goes back up. I'm exhausted with trying , so maybe in the long run this will give me some relief actually.

 

[mrsmusic]

@mrsmusic have you actually been prescribed insulin for your diabetes? Do you have the contact details for a hospital DSN to help you with sarting off on insulin?

The book "think like a pancreas" sets out the basics of what you need to know to manage type 1 so it's worth getting hold of a copy of that.

I'll check out that book thanks. No, only just got news from gp yesterday. .awaiting specialist appointment . Thanks for your reply.

 

[Japes]

Oh thankyou. Can't believe how similar our stories are! I've had nothing but support from my medical people as they know how hard I've worked (with normally great results). I just started getting higher morning readings which i couldn't control and my hbalc was nudging up, while i was working harder and harder at exercise etc. It's good to hear a story just like mine as i don't know anyone in my situation. Many thanks!

I don't know anyone else with it either, though there are plenty of classic T1s and T2s in my world. It's good to have the on-line support on this one!

 

[NewTD2]

According to medical research, something like 30-40% of Type 2 Diabetics will eventually move to Insulin within 2-10 years.

My dear friends, we should NOT at all be frightened. Insulin is a clean medicine and our best friend.

If our pancreas would one day give up, we should be grateful for the availability of Insulin in our time. Whereas 100 years or so ago, there was no Insulin and diabetes was a death sentence.

I was on Insulin injections for 13 days but somehow it revived my pancreas.

I am taking x1 tablet of Metformin, for now!