GAD came back negative

[Providence 62]

@Antje77 I think it was Steve Redgrave, the UK Olympic gold medallist rower (a type 2 on insulin) who said, it's not the label that matters, it's the treatment. If insulin is what does the job then that is what counts. Unfortunate about the Freestyle though! I am testing about five times a day now and am beginning to see how a Freestyle would be helpful.

 

[DCUKMod]

@Antje77 I think it was Steve Redgrave, the UK Olympic gold medallist rower (a type 2 on insulin) who said, it's not the label that matters, it's the treatment. If insulin is what does the job then that is what counts. Unfortunate about the Freestyle though! I am testing about five times a day now and am beginning to see how a Freestyle would be helpful.

Whilst I agree with both you and Sir Steve that the treatment is more important than the label, that can't be a wholehearted agreement, because T2s on insulin and T1s using insulin tend to be treated differently.

Firstly, as good percantage of T2s on insulin are treated at primary care level, whereas almost all T1s are cared for by hospital clinics. Unfortunately the levels of expertise in the GP environment are almost certainly to be lower and certainly far less saturated.

T2s are mush more likely to be treated with fixed doses of mixed insulin than on a basal/bolus basis. This of course means that their routines need to be pretty stable in order to avoid hypers/hypos. I know for myself, I would detest it if I had to eat basically the same (in terms of carbs) breakfast every day, or that I could have a bumpy ride if I chose to swap my main meal from dinner to lunchtime, or even if I plain old didn't fancy eating for some reason.

T2s are not routinely invited to DAFNE (or her cousins) courses. This is, I'm sure, partly because they aren't self-managing doses on a meal by meal basis and partly because they just don't.

I have only encountered one T2 pumper, based in UK. The Libre is, to date, only available on prescription to T1s, so any T2s on insulin can't access that, unless they self fund.

I'm not trying to be difficult, or depressing for our new friend @SB.25 here, I'm just trying to illustrate my point that, like so many things in this life, the Devil's in the detail.

SB.25, maybe some of my foregoing post will help you understand the context of my suggestion that you try to remain under hospital care, whatever they decide you are. It's easier to fight your case from the inside, rather than have to try to reinfiltrate at some point in the future.

 

[SB.25]

Whilst I agree with both you and Sir Steve that the treatment is more important than the label, that can't be a wholehearted agreement, because T2s on insulin and T1s using insulin tend to be treated differently.

Firstly, as good percantage of T2s on insulin are treated at primary care level, whereas almost all T1s are cared for by hospital clinics. Unfortunately the levels of expertise in the GP environment are almost certainly to be lower and certainly far less saturated.

T2s are mush more likely to be treated with fixed doses of mixed insulin than on a basal/bolus basis. This of course means that their routines need to be pretty stable in order to avoid hypers/hypos. I know for myself, I would detest it if I had to eat basically the same (in terms of carbs) breakfast every day, or that I could have a bumpy ride if I chose to swap my main meal from dinner to lunchtime, or even if I plain old didn't fancy eating for some reason.

T2s are not routinely invited to DAFNE (or her cousins) courses. This is, I'm sure, partly because they aren't self-managing doses on a meal by meal basis and partly because they just don't.

I have only encountered one T2 pumper, based in UK. The Libre is, to date, only available on prescription to T1s, so any T2s on insulin can't access that, unless they self fund.

I'm not trying to be difficult, or depressing for our new friend @SB.25 here, I'm just trying to illustrate my point that, like so many things in this life, the Devil's in the detail.

SB.25, maybe some of my foregoing post will help you understand the context of my suggestion that you try to remain under hospital care, whatever they decide you are. It's easier to fight your case from the inside, rather than have to try to reinfiltrate at some point in the future.

I definitely want to stay under the care of the consultant rather than my GP and from speaking to my GP yesterday they are happy for me to have appointments with the consultant still as they have said I’m a rare case and so they would prefer I deal with my consultant. As per my other post I’ve been very happy with the care I have had so far from all sides .

Let’s hope that when I see my consultant he agrees I can stay under his care...

 

[michita]

Got my C-peptide result last month, which came back below normal (0.29 nmol/l non fasting with a bg of 6.1) and today my anti-GAD test came back negative.
Pretty inconlusive, I'd say, although it increases the chances of having T2.
Next week the internist who ordered the tests will call me. Let's see if she wants to do more testing for other antibodies or even for MODY, or if we decide things are going quite well and leave it be.

Hi Antje77, although GAD is most common one as you say there are other type 1 antibodies ICA, IAA and IA-2A maybe you can be tested for them ?

I'm getting all of them tested at my next blood test because my consultant is a bit puzzled at my non diabetic bs level (they don't have my initial test results at diagnosis because I moved hospital). I'm also positive on a thyroid antibody and I have no doubt I have type 1....

 

[Antje77]

Hi Antje77, although GAD is most common one as you say there are other type 1 antibodies ICA, IAA and IA-2A maybe you can be tested for them ?

I'm getting all of them tested at my next blood test because my consultant is a bit puzzled at my non diabetic bs level (they don't have my initial test results at diagnosis because I moved hospital). I'm also positive on a thyroid antibody and I have no doubt I have type 1....

O, I forgot to update, apologies. Here's what I posted in another thread after the phone call from the internist:

Got the phone call from the internist, and as of 10 minutes ago I'm officially T1.

There's still no clear evidence one way or the other but she thought it much more likely it's T1 and she was happy to diagnose me with the information we have.
We talked over changing to the hospital or staying with my GP practice nurse (who I very much like but who doesn't really have much of a clue) and she was fine with either choice, even though T1's as a rule are treated in the hospital. She was also fine with me seeing her only once a year with an optional nurse visit halfway the year, so I elected to change to her.
True to her word, she'll expect me in about 6 months time, as my last visit with practice nurse and blood tests were 6 months ago.

I think I'm very happy with this. I'll go drink a couple of beers now.

Whilst I agree with both you and Sir Steve that the treatment is more important than the label, that can't be a wholehearted agreement, because T2s on insulin and T1s using insulin tend to be treated differently.

Firstly, as good percantage of T2s on insulin are treated at primary care level, whereas almost all T1s are cared for by hospital clinics. Unfortunately the levels of expertise in the GP environment are almost certainly to be lower and certainly far less saturated.

T2s are mush more likely to be treated with fixed doses of mixed insulin than on a basal/bolus basis. This of course means that their routines need to be pretty stable in order to avoid hypers/hypos. I know for myself, I would detest it if I had to eat basically the same (in terms of carbs) breakfast every day, or that I could have a bumpy ride if I chose to swap my main meal from dinner to lunchtime, or even if I plain old didn't fancy eating for some reason.

T2s are not routinely invited to DAFNE (or her cousins) courses. This is, I'm sure, partly because they aren't self-managing doses on a meal by meal basis and partly because they just don't.

I have only encountered one T2 pumper, based in UK. The Libre is, to date, only available on prescription to T1s, so any T2s on insulin can't access that, unless they self fund.

I'm not trying to be difficult, or depressing for our new friend @SB.25 here, I'm just trying to illustrate my point that, like so many things in this life, the Devil's in the detail.

SB.25, maybe some of my foregoing post will help you understand the context of my suggestion that you try to remain under hospital care, whatever they decide you are. It's easier to fight your case from the inside, rather than have to try to reinfiltrate at some point in the future.

I agree with you in general, @DCUKMod , but in my personal case I can neatly tick off all issues you mentioned as already more or less solved so there wasn't a pressing reason to get the right diagnosis.
- GP-nurse not very knowledgable but very willing to work with what I propose, resulting in nice visits with my care organised the way I like it. And I am pretty knowledgable so at least one of us knows what they're doing.
- Have been on basal/bolus from the start and wouldn't want it any different. Took some time to find out what insulins suited me best but for now all's well with Tresiba and Fiasp.
-There are no DAFNE like courses in the Netherlands.
- Don't want a pump. At the moment you have to have an hba1c of 64 or higher for a year to get the Libre, so I have to self fund anyway. Hopefully I'll get one a bit sooner now that I'm a T1.
-

 

[Antje77]

Was just reading this thread as I also had my peptide and anti body tests come back this week.

The c peptide had a note on it to say that ‘low levels for high blood glucose at the time’. And apparently the other anti bodies came back negative. So the GP called me to tell me that type 1 is ruled out.

They are now suspecting I may be MODY and want to do testing for this. The reason being I am only 26, have a bmi of 21 and in all other aspects I am healthy and active.

Would you know what the MODY testing involves at all?

I think my diagnosis at this stage is somewhat irrelevant as they are still treating me with insulin.

I’m hoping to get an appointment with my consultant by the end of the month

So you had basically the same result as I have, and they diagnose me with T1 and you with 'definitely not T1'. And I'm pretty fat and you're not.

For mody they need to do genetic screening, I don't know what part of you they use for that (blood, bit of the inside of your cheek or something else) but it's lab-tests.

 

[DCUKMod]

O, I forgot to update, apologies. Here's what I posted in another thread after the phone call from the internist:

Got the phone call from the internist, and as of 10 minutes ago I'm officially T1.

There's still no clear evidence one way or the other but she thought it much more likely it's T1 and she was happy to diagnose me with the information we have.
We talked over changing to the hospital or staying with my GP practice nurse (who I very much like but who doesn't really have much of a clue) and she was fine with either choice, even though T1's as a rule are treated in the hospital. She was also fine with me seeing her only once a year with an optional nurse visit halfway the year, so I elected to change to her.
True to her word, she'll expect me in about 6 months time, as my last visit with practice nurse and blood tests were 6 months ago.

I think I'm very happy with this. I'll go drink a couple of beers now.



I agree with you in general, @DCUKMod , but in my personal case I can neatly tick off all issues you mentioned as already more or less solved so there wasn't a pressing reason to get the right diagnosis.
- GP-nurse not very knowledgable but very willing to work with what I propose, resulting in nice visits with my care organised the way I like it. And I am pretty knowledgable so at least one of us knows what they're doing.
- Have been on basal/bolus from the start and wouldn't want it any different. Took some time to find out what insulins suited me best but for now all's well with Tresiba and Fiasp.
-There are no DAFNE like courses in the Netherlands.
- Don't want a pump. At the moment you have to have an hba1c of 64 or higher for a year to get the Libre, so I have to self fund anyway. Hopefully I'll get one a bit sooner now that I'm a T1.
-

I'm really delighted you have the coreect diagnosis at least @Antje77 . I know you were pretty paid back about it and had found a way to manage well and by-and-large get what you needed for your diabetes care from your team.

The other thing I didn't write in my earlier post (which was pretty much shot from the hip), was the reaction and treatment in an emergency situation - not necessarilty a diabetes emergency. For your records to clearly show you diagnosis and indicate the regimes you need, just take out another potential variable at a time you may not be able to help yourself.

Like most things diabetes, it's sometimes just a case of trying to balance the rough and smooth as best we can.

Enjoy your beers.