Just rediagnosed as lada, now what?

[Microbe99]

Hi All,
I have been living with diabetes for 20 odd years and considered a type 2 but almost every health care professional I see is surprised I'm not a type 1.

Have family history of auto immune problems but not diabetes.

I've been on insulin since 2008 but have now asked the GP and had a c peptide which is 59 (low) and a Gad antibody >2000 therefore type 1 / LADA.

I'm now waiting for Dr appointment to discuss but wanted to know what happens next?

Any feedback gratefully received.

Thanks

 

[Mrs HJG]

Hi there @Microbe99 from my limited experience nothing happens immediately! Well not strictly true, I had a letter telling me I would have an appointment with a consultant in 'the future' but to let them know if it was no-longer required (!?!?).

It should mean that you will be accepted to get a Libre, if you do not already have one on prescription, and as you are on insulin already, then you may be suitable for more tech, but I don't know anything about that side, sorry.

I had to go privately for an endocrinologist to confirm T1/LADA not T2, despite my positive antibody tests, otherwise I was going to have to wait 12 months+ to see one on the NHS; with the reclassifying and the consultant's request, I will get the Libre next month, (2 months after the appointment and 6 months in), but as I am well managed, basically not a priority.

Hopefully wherever you are will take action sooner, but with the new diabetes guidance, if you are in the UK, I guess health trusts are swamped with new requests for all the tech as per NICE. I guess it depends on how well managed you are and your priorities and eagerness for tech on how you want to push it with your GP, (but mine will do nothing, I am now in theory under the hospital team).

Hope this helps, but not sure if it will

edited for typos

 

[Microbe99]

Thanks Mrs HJG for the feedback, I wasn't expecting much tbf but would like to be seen by a consultant to discuss treatment options and tech.
I've dabbled with private funded flash gm but can't afford to have it all the time, I guess this may unlock the door to nhs funded kit.

I've only ever seen nurses since diagnosis and I know more about diabetes than most of them!

I'll remain optimistic and patient as until this morning I was unaware I was Lada although I did suspect I wasn't a typical type 2

 

[Swillbos]

Welcome to the LADA club Microbe99!

I was re-diagnosed after seven years as a T2, initially managing well, then spiralling out of control, quite rapidly by the end as my pancreas finally spluttered out of action. I think what happens next depends (i) on your point of entry into the LADA club and (ii) what the arrangements are between your GP practice and hospital specialists (assuming you are in the UK NHS system?).

(i) for me it was a massive change starting on an insulin regime, and I actually was quite poorly, but as you have already been on insulin for 14 years, I doubt day-to-day much will change straight away.

(ii) my care arrangements changed to a shared care system split between the GP and community nurse (blood tests, blood pressure and foot checks etc) and the hospital consultant and specialist diabetic nursing team. In practice and in times of Covid the latter has meant predominantly telephone support . But I get 2x consultant phone consults a year and a lot more blood and urine tests than I did as a T2. I have a nursing team I can contact pretty much at any time, but after the first couple of months, I haven't really needed to use them.

I haven't been offered a Libre, although I do get free test strips, which I had to self-find as a presumed T2. As I understand it there are some slightly perverse incentives in the NHS if you are deemed to be managing your diabetes well. My HbA1C has improved from 107 at re-diagnosis to 46, which my consultant is very pleased with. I am aware that lots of other T1s and T2s on this network routinely report lower scores than that, but I manage this on what she tells me is a low dose of fairly primitive basal (Humulin 1) and Novorapid, so even if my HbA1 breaks no records I have few hypos and so I am not a priority for a Libre.

Wishing you all the best, the very fact that you are here asking questions tells me you will do well!

 

[Microbe99]

Hi Swillbos
Thanks for the response
I'm in the UK and worked in the NHS for 40 years and am retired for 10 years now.
I guess I'm looking for a bit more support and shared care sounds ideal.
I've used a couple of libre sensors to try and help a bit but self funding gets a bit expensive so don't use them often.
My history is of reasonable levels for a few years but recently increasingly erratic A1c levels which led me to ask for the Gad abs and c-peptide which have identified me as LADA.
Thanks again for the feedback.
Onwards and upwards!

 

[Microbe99]

Hi All,
***Update***

Now had 3 conversations with my dn and made much progress!

I've replaced Novorapid with Fiasp to help deal with the post prandial highs.
I'm going to move from split Levemir to Tresiba soon as I'm getting glucose drops post each Levemir dose and intermittent nightly drops which have not disappeared with less and less Levemir. The idea is that the Tresiba will be more consistent and avoid these night-time drops.
I'm on a list for a place on a Dafne course and have an appointment with a hospital consultant.
Also just heard I've been agreed funding for libre.

Feeling much more supported now

 

[Fenn]

The biggest difference for me was how well I am now treated by all health care people, the way they treated me as T2 was a world of difference, disgraceful. But that’s just me, hopefully others are not blamed by the people supposed to be supporting them.