After advice from those in the know?

[Inka]

I completely get why it doesn’t seem right @Tahero It does sound confusing and upsetting too, not knowing exactly what’s going on. It might be that only time will give you a more definite answer - that is, as your beta cells decline (if you are Type 1) and the honeymoon period ends (some people can stop using insulin during the honeymoon period as their beta cells rally temporarily).

So, I think it’s a case of waiting and watching to see what happens.

And I know you’re not being argumentative 🙂 I don’t know whether you’re Type 1 or not. All I was saying is that nothing that you’ve said sounds like you’re not, apart from the antibodies. Sometimes people’s diabetes type isn’t clear. Perhaps you’re just one of those people? But even if you are, I do think things will become clearer eventually.

 

[Tahero]

Yes I agree. I have always said to them......in a few years time we might need another plan, but currently the one we are on seems like the wrong one for the current situation?

 

[Inka]

Yes I agree. I have always said to them......in a few years time we might need another plan, but currently the one we are on seems like the wrong one for the current situation?

The insulin? I think if it were me, I’d keep insulin in my fridge and use it if/when necessary. I wouldn’t want to risk being without it. I’d also keep a close eye on my blood sugar and my ketones. That way, you’re watching closely ready to respond if needed.

 

[Tahero]

I am also due back on stage in a few months @Inka and obviously can't have hypos all over the place. Not sure its in the script. Shows have been delayed for 18 months whilst I had the other ops, but February, back to it. Hence why I lowered the insulin and stopped to see if that makes it maintainable at the moment as I can't go into hypo halfway through a dance routine......though I can assure these days the dance intensity is a lot different.

 

[Tahero]

The insulin? I think if it were me, I’d keep insulin in my fridge and use it if/when necessary. I wouldn’t want to risk being without it. I’d also keep a close eye on my blood sugar and my ketones. That way, you’re watching closely ready to respond if needed.

Yes , I have both still and am keeping a very close eye. I think I was just after some other thoughts as it seems mad that I've stopped the insulin, and blood sugars have gone down even in two weeks. I wear a libre 2 monitor and I've only ever been three times out of range. Normally I'm 100% in range, and when I hear what other people's levels are and the amount of insulin I take, you think are you sure I have it. When even if I eat and sit on sofa , blood sugars are always under 7 and hour and a half after eating?
Anyway, I'll stop rambling on now..as always , you have been a great help. Thank you. X

 

[Inka]

I totally get that @Tahero and I’d probably do the same in your position (not that anyone would want to see me dance on stage!). That seems sensible. But just keep an eye on things so changes don’t sneak up on you. If you can get another C Peptide done too that might be informative.

There’s someone here who’s in a similar position re antibodies. I’ll find the thread in a minute and post a link.

 

[Inka]

Yes , I have both still and am keeping a very close eye. I think I was just after some other thoughts as it seems mad that I've stopped the insulin, and blood sugars have gone down even in two weeks. I wear a libre 2 monitor and I've only ever been three times out of range. Normally I'm 100% in range, and when I hear what other people's levels are and the amount of insulin I take, you think are you sure I have it. When even if I eat and sit on sofa , blood sugars are always under 7 and hour and a half after eating?
Anyway, I'll stop rambling on now..as always , you have been a great help. Thank you. X

You’ll never ramble as much as me Chat whenever you want, and please do keep us updated.

Most of all, wishing you the very best for your return to the stage

 

[Inka]

Here’s the thread. Not exactly the same situation but talk of antibodies and diabetes type uncertainty:

Thread 'Uncertainty over T1 or T2'

Nov 7, 2024

Apologies for the following, bit of a vent as I’m feeling like the rug has been pulled out from under me.

I had an appointment with a new diabetes consultant yesterday as a result of my hospital DSN making a referral to get T1 officially recorded on my medical records.

The hospital DSNs all thought I was T1 given the amount of insulin I need to keep good BGs and how sensitive I am to both the insulin and how carbs cause a rise in my BG. I am on 28U Levemir and use Novorapid at a ratio of 1U : 8g carbs.

I was diagnosed T2 some 22 years ago at age 42, on Metformin for 4 years with a...

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[Tahero]

I totally get that @Tahero and I’d probably do the same in your position (not that anyone would want to see me dance on stage!). That seems sensible. But just keep an eye on things so changes don’t sneak up on you. If you can get another C Peptide done too that might be informative.

There’s someone here who’s in a similar position re antibodies. I’ll find the thread in a minute and post a link.

Ok. Great. Thanks @Inka . Oh I don't know , I think we should all have a dance on stage at some point, or if not on stage make sure you dance or do something that you love whatever your 'dance' is somewhere in your life. X

 

[Lucyr]

The only results of C-peptide I have are:
April 20th 2024 9am: 674pmol/L
September 24th 2:45pm 388pmol/L

They did the anti-gad antibodies test which was in excess of >2000.

The cpeptide tests need your blood sugar at the time, or whether you thought your bg was high or not to interpret but indicate substantial insulin production.

You don’t want to be reclassified as t2 though since antibodies positive. If classed as t2 it would probably be a pain to get reclassified as t1 if that later seemed correct.

Personally I’d leave it, keep the lada/t1 diagnosis, keep the insulin in the fridge and make sure I kept a ready supply of everything needed should insulin dependency suddenly increase, and just see how things go with some more time.

 

[Tahero]

Hi @Lucyr . Thanks for your reply. That was my thinking too....as in most of what you have written. The puzzling part though is that the anti-gad antibodies can be positive on account of thyroid , which is what I was on the steroids for ....and high dose steroids. I do have a stash in the fridge and will be monitoring levels. Luckily I like numbers and patterns etc etc.