Annual review

[Sheppie84]

So I met with my care team today. Safe to say - no-one knows what is going on. My HBa1c was 40? (5.8) so that's ace, my antibodies are really bad. They can't predict when it will get worse, just that it will get worse.
Anyone been in a similar situation?
Been classed as LADA but on diet control only for a year now. I hate having a time bomb that will detonate and not knowing how or when.



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[mo1905]

Well done on your control so far Sheppie. Yes, eventually you will progress to insulin and your levels will rise but it won't be sudden. It will be a slow progression and could take a while yet. It's nothing to be scared of, in some respects, it's actually easier to control.


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[elaine77]

Hi Sheppie, almost the same as me my friend!

My Hba1c was 45 at my review which my consultant classes as non-diabetic range as far as treatment goes! So he has discharged me from consultant care and has basically told me to go home and wait to deteriorate! Nice to know they're bothering with us LADA types in the name of research isn't it? I mean, of course they wudnt want to try different things whilst were still producing insulin wud they? Nope!

Me too am fed up of being told to wait to deteriorate its just shocking! They shud be trying all sorts with the ones who r still producing insulin not sending them home telling them just to wait until there's none left!! Ridiculously unproductive!!


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.

 

[Sheppie84]

I agree Elaine. It's also very scary, knowing that this is hanging over you and there's nothing you can do. I think Mo might be right - it probably is easier to control on Insulin.

Just feels like a time bomb and I can't make out the countdown timer.
Elaine - how often are you testing your sugars? I was told to just check when I feel ill and maybe once in the week. Does this seem right to you? I've been checking daily til now.



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[elaine77]

No I check mine 3 times a day on average as my consultant said when a deterioration occurs it can occur quickly and because I presented with ketones at diagnosis he doesn't want risk of DKA either.

The same consultant though has also said he won't put me on insulin because my levels are not high enough and he feels no need to risk constant hypos when my control is good on the Metformin and diet.... So basically it's wait till I deteriorate before they will do anything! It's shocking they really should be doing something with LADAs whilst there is still insulin there! Boo!


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.

 

[St4cey]

Hi Sheppie,

Congrats on the HBA1C, mine was 40 too, looks like we're managing really well as we are Sheppie & Elaine. Me, i'm happy with this current situation and enjoy this time of being mindful of my diet without the necessity to be that specific with carb count etc. I've really reduced my testing recently, still most mornings, sometimes after meals or before or when I don't feel too good. I've completely chilled about it all now and i'm going to enjoy this ticking time bomb!!! I think we will know when the change is happening by how we feel and of course by the testing. I'm not sure what could be done with us LADA's as like all diabetics our response to treatment is varied and individual, our rate of depletion are different etc. I never did find out what my anti body count was, have an appointment on 30th Aug so I'll find out then and share, be interesting to see what our 'scores' are, our treatments and rate of deterioration.

Keep going guys, we're doing really well!
xx

 

[desidiabulum]

Hi -- congratulations on the results. Don't keep thinking about the time-bomb. I have MODY (similar to LADA) and received the same lecture about inevitable progression. In fact, they were so convinced that I was going to need insulin any moment that, when I was diagnosed, I was given a full insulin kit with instructions on how to inject, and spent the next year under strict instructions, carrying my frio bag with insulin around with me everywhere I went. Well - more than 3 years on and I'm still not on insulin. Last year I ceremonially threw away the frio bag. No doubt I will be on insulin sooner or later, but it might well be later.
I think the key thing is to see every day without being on insulin as a triumph. It isn't a disaster when you end up on insulin anyway, but why not in the meantime congratulate yourself on what you are doing. The good control you are showing, and the reform of your diet, will also stand you in very good stead whenever you finally move to insulin. So: don't think time bombs, think of every day as a little success, and don't worry about sometimes feeling smug about it! God luck!

 

[paul-1976]

Hi -- congratulations on the results. Don't keep thinking about the time-bomb. I have MODY (similar to LADA) and received the same lecture about inevitable progression. In fact, they were so convinced that I was going to need insulin any moment that, when I was diagnosed, I was given a full insulin kit with instructions on how to inject, and spent the next year under strict instructions, carrying my frio bag with insulin around with me everywhere I went. Well - more than 3 years on and I'm still not on insulin. Last year I ceremonially threw away the frio bag. No doubt I will be on insulin sooner or later, but it might well be later.
I think the key thing is to see every day without being on insulin as a triumph. It isn't a disaster when you end up on insulin anyway, but why not in the meantime congratulate yourself on what you are doing. The good control you are showing, and the reform of your diet, will also stand you in very good stead whenever you finally move to insulin. So: don't think time bombs, think of every day as a little success, and don't worry about sometimes feeling smug about it! God luck!

Ah man! Great post Desi! :thumbup: as you say..Be proud of your successes and it's definitely a positive to feel smug about it too sometimes..It's the feelgood factor that keeps us going!

 

[Daibell]

Hi all. I sympathise with the unpredictable wait but in some ways you are lucky that you have been diagnosed as LADA and are expected to go onto insulin one day. Many LADAs, like myself, are diagnosed by default as T2 with no antibody or other tests and assumed to be able to control long-term with tablets and diet. My GP refused after 7 years to put me onto insulin as I was a T2 wasn't I even though tablets weren't working any more. Finally when my HBa1C shot-up insulin was offered and it has worked wonders. So, it's not nice being LADA but knowing that you are is a step along the way to the right management. Sadly there are no solutions currently whilst waiting other than strict low-carb diet and tablets.