And the results are in!

[Rae]

Hi all

So my antibody tests finally came back last Thursday... as negative.

It's absolutely thrown me as everyone, from the doctor in resus when I had my DKA to the specialist nurse and dietician I saw last Tuesday, have been firmly on team LADA.

I am struggling a little as Thursday's appointment was a very different tone to the earlier ones. Much more negative and just... 'get on with it'.

On the plus side, they've added liraglutide back in (I'd been on dulaglutide but due to risk of another DKA they thought the short release was better than the extended release). I'm happy about that as there's lots of positive evidence around its cardiovascular benefits and stroke risk reduction. I was told however that unless I can lower my triglycerides they will take me back off it. As I've been eating lower carbs, my fat intake is up and I'm not sure how to stay to about half RDA carbs AND reduce fat.
It also seems that the cgm that they were rushing through for me is off the table now.

I don't really know if I'm asking anything, or just writing it out to help me process it.

 

[Inka]

Did they do a C Peptide too @Rae ? It sounds a bit stressful, having your diagnosis changed and surprising you like that. No wonder you feel you need to process it a bit.

 

[Rae]

Did they do a C Peptide too @Rae ? It sounds a bit stressful, having your diagnosis changed and surprising you like that. No wonder you feel you need to process it a bit.

Hi Inka, I don't know to be honest. I was rushed through the appointment and was literally having to ask about the cgm in the doorway. I am going to see if the dsn will still speak to me because consultant seemed to imply I didn't need any further appointments, other than a cholesterol test in 6 weeks to decide whether to withdraw the liraglutide.

Having seen for 8 weeks what it's like when your 'badge' is t1, it was startling to return to the general dismissiveness of t2.

 

[Rae]

Hi all

So my antibody tests finally came back last Thursday... as negative.

It's absolutely thrown me as everyone, from the doctor in resus when I had my DKA to the specialist nurse and dietician I saw last Tuesday, have been firmly on team LADA.

I am struggling a little as Thursday's appointment was a very different tone to the earlier ones. Much more negative and just... 'get on with it'.

On the plus side, they've added liraglutide back in (I'd been on dulaglutide but due to risk of another DKA they thought the short release was better than the extended release). I'm happy about that as there's lots of positive evidence around its cardiovascular benefits and stroke risk reduction. I was told however that unless I can lower my triglycerides they will take me back off it. As I've been eating lower carbs, my fat intake is up and I'm not sure how to stay to about half RDA carbs AND reduce fat.
It also seems that the cgm that they were rushing through for me is off the table now.

I don't really know if I'm asking anything, or just writing it out to help me process it.

Bit of an update, the clinic just called ME to book in for cgm training - they've had a cancellation today. Must have had a change of heart.

Spoke to the nurse about antibodies and cpeptide. Both primary antibody checks were completely normal so they are certain it is T2. Cpeptide has not been checked (ever by the looks of it) so I will ask about that when I can next get an appointment with DSN (some time after my bloods in 4 weeks).

Apparently consultant has put in notes that he wants to see me again in 4 months, which he never told me and why I was stressing about being discharged. Apparently 'that's just how he is', which is not great but I've worked with consultants long enough to know that there's no changing them!

A step forward, but still finding it a bit rough, as T2 comes with a whole bushel of blame and guilt alongside it for me, as well as experience of not so great care. I just need a bit of time to get my head around it again.

 

[DaveB]

Hi do ask for a C-Peptide test. The GAD test is not conclusive. Viruses amongst other conditions can cause beta cell destruction. The C-Peptide will show how much insulin you are producing which is what you really need to know. I argued with the Diabetes Clinic when they lost my C-Peptide test and said the GAD was negative therefore that was it and no need to repeat the C-Peptide. I objected and the consultant called me and issued another C-Peptide test. That showed I was just above the T1 level. He now takes my condition seriously and treats me as a T1. As he says, the test doesn't prove I'm T1 but obviously I am.

 

[Rae]

Hi do ask for a C-Peptide test. The GAD test is not conclusive. Viruses amongst other conditions can cause beta cell destruction. The C-Peptide will show how much insulin you are producing which is what you really need to know. I argued with the Diabetes Clinic when they lost my C-Peptide test and said the GAD was negative therefore that was it and no need to repeat the C-Peptide. I objected and the consultant called me and issued another C-Peptide test. That showed I was just above the T1 level. He now takes my condition seriously and treats me as a T1. As he says, the test doesn't prove I'm T1 but obviously I am.

Thanks Dave, I would definitely be interested to know although I'm on a pancreatic stimulator so wondering if that will skew results. I still require insulin even with that, so I am absolutely happy to take a T2 diagnosis because theres definitely insulin resistance in play, but I do think there's something else going on as well as I went from very slight elevated hba1c (43) to pronounced (82) in 6 months, resisted treatment, minimal effect from a 10kg weightloss or the subsequent 15kg gain, and then the DKA.

I wouldn't care so much if it weren't for the difference I've experienced in treatment as in either case it's insulin to requirement. But I want to make sure I don't just get swept under the rug again. I'm glad your GP is working with you, now.