Change of diagnosis

[julie56]

After nearly 10 years of trying to achieve good blood sugar levels, low carbing and steadily losing weight despite taking increasing amount of medication I was referred to the hospital diabetic team for further tests. It has now been confirmed that my type 2 diagnosis has now been now been altered to type 1. It is obviously slowly evolving and has only now reached initiating insulin stage. I am quite apprehensive but looking forward to stopping all the oral meds. I didn't know whether to post on here or on the lada forum, but she was insistent it was type 1as positive for antibodies. Wondering if anyone else has has similar experience, any tips welcome.

 

[EllieM]

LADA is a subset of T1 so you can post in either forum.

Hopefully you will feel much better on insulin and will be able to take advantage of T1 goodies such as libre or dexcom.

 

[PRFI26]

I am currently in hospital with DKA and I was diagnosed with T2 in 2019 but now T1. Started insulin and libre today and I’m so anxious about what’s ahead - feeling very scared and alone

 

[MrsA2]

I am currently in hospital with DKA and I was diagnosed with T2 in 2019 but now T1. Started insulin and libre today and I’m so anxious about what’s ahead - feeling very scared and alone

Not my area of expertise, but there are plenty on here who can advise and support, just maybe not so many this time of night.
Hang on in there and I'm sure they'll post as soon as they can

 

[julie56]

I am currently in hospital with DKA and I was diagnosed with T2 in 2019 but now T1. Started insulin and libre today and I’m so anxious about what’s ahead - feeling very scared and alone

Oh gosh poor you. At least you are in the very best place to get sorted. Hope you start feeling better very soon and quickly adjust to your insulin regime. Best wishes.xx

 

[Mrs HJG]

Hi @julie56 and @pr126 I hope you both get in the swing of your new regimes soon, I know I will have all that to come, as it appears I was diagnosed really early as T1/LADA (anti-bodies all positive) within a month of diagnosis due to conflicting opinions about whether T1 or T2, but I'm still in the non-insulin-dependent stage, (but knowing I am not actually T2).

I'd like to say that at least with a T1/LADA diagnosis you will be entitled to Libre, (and maybe more as you are on insulin now) and hospital-based consultant team care, which in my albeit limited experience is highly superior to what T2s get at their doctor's surgery, so I hope you will be pleasantly surprised about that - you have to take all the positives you can in this game!

This site is fantastic and I wouldn't be without all the help and information I have had from the folks on here. @julie56 you have a whole new load of boards to read and people to meet now!

 

[searley]

I was initially classed T2..

My nurses and gp all said I’m a ‘classic t1’ right from the beginning

But my consultant umm’ed and ahh’ed then said I was t2, I was on insulin after 6 months due to issues with oral meds

After 9 years my consultant still insisted I was T2… so I said I was stopping insulin.. she introduced an oral med after 3 months there was no drop in hba1c.. I still insisted I was stopping insulin

So the consultant referred me to a genetics doctor saying they would be able to test and see what medication would best suit me

After the first blood test with her I had a phone call saying no point going further as I’m T1

So yes it does happen.. I guess it’s hard for them in the beginning as there will be factors that put you in both groups

But I do also wonder if they hold on to a t2 diagnosis as long as possible as it’s much cheaper than t1

 

[Grant_Vicat]

But I do also wonder if they hold on to a t2 diagnosis as long as possible as it’s much cheaper than t1

I'm sure you're right. But that is surely negligence?

 

[searley]

I'm sure you're right. But that is surely negligence?

Trouble is they always say “it’s not black or white” there are markers for both so they go with age/weight bias

 

[Juicyj]

I am currently in hospital with DKA and I was diagnosed with T2 in 2019 but now T1. Started insulin and libre today and I’m so anxious about what’s ahead - feeling very scared and alone

It's a scary time so hope you are being supported there ? The shock of diagnosis is huge, I posted a thread about things every t1d should know on here, please have a read, also please post on the t1 forum about your situation, others will offer support but as you have posted on another thread about this it wont have much visibility here, best wishes J

 

[julie56]

Hi @julie56 and @pr126 I hope you both get in the swing of your new regimes soon, I know I will have all that to come, as it appears I was diagnosed really early as T1/LADA (anti-bodies all positive) within a month of diagnosis due to conflicting opinions about whether T1 or T2, but I'm still in the non-insulin-dependent stage, (but knowing I am not actually T2).

I'd like to say that at least with a T1/LADA diagnosis you will be entitled to Libre, (and maybe more as you are on insulin now) and hospital-based consultant team care, which in my albeit limited experience is highly superior to what T2s get at their doctor's surgery, so I hope you will be pleasantly surprised about that - you have to take all the positives you can in this game!

This site is fantastic and I wouldn't be without all the help and information I have had from the folks on here. @julie56 you have a whole new load of boards to read and people to meet now!

Thank you for your reply, I was a bit of an anomaly when first diagnosed type 2, and managed quite well to start with but more and more meds given with lesser and lesser effect. I am pleased to be taken off all of them now and sure I will adjust to taking insulin especially with all the knowledge and experience of this site. P.s. Hope you don't have to wait too long for your change in medication, as I understand it, it is better to start insulin sooner rather than later.

 

[Mungobean]

Hi, I was initially diagnosed with T2 at 51 and I don’t know why but something just didn’t sit right with me and so I persuaded my GP to do the antibody tests and they confirmed that I was actually T1.

 

[ChrisAskew]

Hi, I too was diagnosed as T2 in my late 50s and then a few years later as type 1.

I now take mixed fast/long acting insulin twice a day and have a fast acting for heading off peaks at lunchtime. You will get used to the routine, but I find it does help to keep to a regular routine to not forget taking the insulin.

The thing that has most changed however, is that I no longer do finger prick testing, but rather use a Freestyle Libre sensor -a complete game changer for me.

The other thing in my case is that I can significantly lower the glucose levels through doing exercise.

Hope this helps.
Chris

 

[Blanchoid]

LADA is a subset of T1 so you can post in either forum.

Hopefully you will feel much better on insulin and will be able to take advantage of T1 goodies such as libre or dexcom.

Type 2 diabetics should be able take advantage of such goodies as libre or dexcom anyway!

The nice guidelines changed some time ago to included type 2's...

 

[Blanchoid]

Hi @julie56 and @pr126 I hope you both get in the swing of your new regimes soon, I know I will have all that to come, as it appears I was diagnosed really early as T1/LADA (anti-bodies all positive) within a month of diagnosis due to conflicting opinions about whether T1 or T2, but I'm still in the non-insulin-dependent stage, (but knowing I am not actually T2).

I'd like to say that at least with a T1/LADA diagnosis you will be entitled to Libre, (and maybe more as you are on insulin now) and hospital-based consultant team care, which in my albeit limited experience is highly superior to what T2s get at their doctor's surgery, so I hope you will be pleasantly surprised about that - you have to take all the positives you can in this game!

This site is fantastic and I wouldn't be without all the help and information I have had from the folks on here. @julie56 you have a whole new load of boards to read and people to meet now!

Why do people keep saying that t1d are the only one entitled to Libre or Dexcom??

The NICE guidelines for these devices changed quite a while ago and I would urge everyone considering using one to go back to their consultant or DSN and ask/demand in getting one!!

I am in the process of getting my MP to ask for approval to get Libre 3 added to the NHS list of approved devices as the DSN and consultants have not had any joy!

The Libre 3 is better in a lot of ways: more accurate, shorter startup time than dexcom, lasts longer than dexcom, smaller than libre 2 and dexcom... all of this makes it a no brainer but we still cannot get them on the NHS, apparently due to cost!

I mean these are a couple of pounds dearer, I would pay the difference if we get these!!!!

 

[GinnyIckle]

Why do people keep saying that t1d are the only one entitled to Libre or Dexcom??

The NICE guidelines for these devices changed quite a while ago and I would urge everyone considering using one to go back to their consultant or DSN and ask/demand in getting one!!

I am in the process of getting my MP to ask for approval to get Libre 3 added to the NHS list of approved devices as the DSN and consultants have not had any joy!

The Libre 3 is better in a lot of ways: more accurate, shorter startup time than dexcom, lasts longer than dexcom, smaller than libre 2 and dexcom... all of this makes it a no brainer but we still cannot get them on the NHS, apparently due to cost!

I mean these are a couple of pounds dearer, I would pay the difference if we get these!!!!

Some trusts will cover Libre for T2D, but others don't yet. I think that's changing this autumn, which would be fantastic. We're paying our of pocket for Libre for my husband. It's been worth it -- huge improvement in glucose control, and finding what he can eat when. But it's a huge dent in our monthly budget.

 

[gardener612]

Yes, same thing happened to me. Seems that if you aren't a child, they don't routinely check for antibodies, even when the Type 2 drugs aren't working. Very frustrating since LADA info. is easily found online and so you'd expect that the doctors would also know to check. I'm glad that you have a good diagnosis now. With the Libre and insulin, you should soon have things under control.

 

[Swillbos]

Welcome to the LADA club @julie56 and @pr126! I was re-diagnosed as T1 after 7 years as a T2 - I had risk factors for both types, but the starting assumption that I was T2 seemed reasonable enough and I also did very well initially on diet and exercise, and then metformin. By the time my pancreas completely packed in I was really quite poorly (and for the first time in my life thin!). I am sure you will both do well on insulin once you've had a chance to get your heads round the change of diagnosis and what that means in practical terms eg. never leave the house without a supply of jelly babies.

Just one thing to mention I have continued to take Metformin as I understand it increases your sensitivity to insulin. My consultant moved me onto slow release, although I had been fine on the bog standard version. I think using both insulin and Metformin is more common among LADA than T1 folk as we tend already to already be on it, but if I'm wrong I am sure someone will correct me! The LADA forum might be a good place to look if you want to find out more.

Best of luck to you both xx

 

[becca59]

@ChrisAskew just to point out, finger pricking for highs and lows are still recommended by Libre.

 

[Duchess21]

After nearly 10 years of trying to achieve good blood sugar levels, low carbing and steadily losing weight despite taking increasing amount of medication I was referred to the hospital diabetic team for further tests. It has now been confirmed that my type 2 diagnosis has now been now been altered to type 1. It is obviously slowly evolving and has only now reached initiating insulin stage. I am quite apprehensive but looking forward to stopping all the oral meds. I didn't know whether to post on here or on the lada forum, but she was insistent it was type 1as positive for antibodies. Wondering if anyone else has has similar experience, any tips welcome.

Hi. In the spring of 2019 I was diagnosed with Type 2. As I did not need to lose weight my GP just told me to " eat less sugar" .
I did my own research and cut down on sugar/carbs.
In November 2019 I was blue lighted into hospital with DKA. They told me later that I was lucky to be alive.
In hospital I was immediately put onto lnsulin and on my chart it said Type 1.
When I checked with my GP he said I was probably LADA but he couldn't confirm this as there was no test available.
Needing travel insurance I once again asked my GP for a definitive diagnosis. After humming and aahing she said I was " most likely Type 2 insulin dependent".
I'm thinking of going private to try and get this sorted once and for all.
Has anyone been down this route?