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Oh the types they are a changing

Jim Lahey said:
I probably missed it somewhere but are there not antibody tests that can confirm or disconfirm true autoimmune type 1? There are other reasons for a pancreas to pack up? Not that it matters much I suppose if you’re underproducing. I maintain that diabetes is a spectrum of both production and resistance. Always remember that T1 and T2 are not mutually exclusive. You can be T1 and develop T2 through excess insulin dosing over a period of decades. You can be T2 and wreck your pancreas but not be T1. You can be T2 and later develop autoimmune T1 (less likely).
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Hi Jim, I was told by my Consultant that the issue with antibodies is that they can disappear after a while so if not done fairly soon after presentation then they are of less use when showing negative.
 
Hi @Fenn I guess it will be difficult to think of yourself with T1/LADA rather than t2 after all this time but I think it will be worth it. On this forum, I think the advice may be a bit different (you should get less of the "cut your carbs" messages) and you will be entitled to more from the NHS. Whilst only 20% of people with Type 1 in England are targeted for Libre, that's 20% higher than the target for t2. You may also find the DAFNE course useful if you can convince your consultant to get you on it.

As for 5 year moratorium, I wasn't aware there was any limit for how long it takes some doctors to realise they made a mistake. You read about other problems such as women with endometriosis who suffer for longer before they get the correct diagnosis.

And T1/LADA are just s susceptible to being overweight as people without diabetes. Unfortunately, it does not protect us from over eating and weigh gain. I guess when considering t2 vs T1, doctors do look at our weight as an indicator (my unscientific diagnosis in my 30s was "You much be T1 because you are too slim to be t2" ) but I know a few overweight people with T1.
 
An interesting post. I don't fit the normal pattern so question, surprisingly, the C-Peptide test. I've always been slim, my gym measures show body and visceral fat in a good range. I use fairly high amounts of Basal/Bolus and couldn't live without insulin as my BS rockets up if I don't inject enough. I keep my carbs below 150gm/day. I believe a virus clobbered my beta cells. So why is my C-Peptide not yet below the T1 range hence I'm still listed as T2? My endo did a urine C-Peptide and I don't trust the mid-range results it gave. A couple of years back I had a plasma C-peptide and that showed me just above the T1 level so the two test methods don't compare. Creatinine varies a lot so I'm suspicious of the urine test for C-Peptide. There is a lot more yet to be learned about T1/T2 but it isn't simple.
 
KK123 said:
Hi Jim, I was told by my Consultant that the issue with antibodies is that they can disappear after a while so if not done fairly soon after presentation then they are of less use when showing negative.
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I had a GAD test and it was negative, although on the edge, still negative, can't remember what the numbers were.
 
This is such a grey area condition, fascinating, you would think by now that we would have a definitive way of determining types at least, medicine is so advanced in so many areas, we have robots doing heart surgery but they can't decide which condition we even have, its very interesting.

edit: not saying I could do better.
 
@rosemaree high blood sugars are horrible so I am lad to read that yours are coming down.
I don't know where you got the idea that you are insulin resistant as 22 units of insulin is not high.
To be honest, comparing insulin doses is pretty pointless as we just need the amount of insulin we need and that depends on many things, not just insulin resistance, like weight, how active you are, what you eat and more - I am sure two people with Type 1, both the same weight doing the same exercise and eating the same food will require different amounts of insulin.
 
on paper there maybe a 5 year cut off but in real life there is no 5 year cut off I AM type 1 diagnosed 9 years after the diagnosis.. the only reason it took so long was a stubborn consultant who refused to retest a d diagnose... I was on insulin from 6 months of diagnosis my who care team apart from my consultant said 'classic type 1' but the consultants decision rules

so a 9 year diagnosis for me.. but I am type 1
 
In Response said:
@rosemaree high blood sugars are horrible so I am lad to read that yours are coming down.
I don't know where you got the idea that you are insulin resistant as 22 units of insulin is not high.
To be honest, comparing insulin doses is pretty pointless as we just need the amount of insulin we need and that depends on many things, not just insulin resistance, like weight, how active you are, what you eat and more - I am sure two people with Type 1, both the same weight doing the same exercise and eating the same food will require different amounts of insulin.
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I average 87 units a day.. but I eat quite a lot as I'm very active.. but I've compared other pump users some have much less some much more
 
It is possible to have double diabetes. Type 2 and type 1 at the same time.

Just as it is possible to be a slim type 2.

It's all far more complex than many medical people realise.
 
searley said:
I average 87 units a day.. but I eat quite a lot as I'm very active.. but I've compared other pump users some have much less some much more
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As I mentioned, comparing insulin doses ins pretty pointless so I don't bother sharing.
I think it could be misleading for some less knowledgeable people using insulin.

(And most of us with insulin pumps found their doses reduced when they migrated from injecting.)
 
lucylocket61 said:
It is possible to have double diabetes. Type 2 and type 1 at the same time.
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Agree - it is also possible to have Type 1, be overweight and NOT have insulin resistance (which is what I assume you mean by type 2 at the same time).
 
searley said:
on paper there maybe a 5 year cut off but in real life there is no 5 year cut off I AM type 1 diagnosed 9 years after the diagnosis.. the only reason it took so long was a stubborn consultant who refused to retest a d diagnose... I was on insulin from 6 months of diagnosis my who care team apart from my consultant said 'classic type 1' but the consultants decision rules

so a 9 year diagnosis for me.. but I am type 1
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The cut off for 5 years is for starting insulin, not what's in your GP's notes. You started insulin 6 months after diagnosis which fits the type 1 brief.
 
13+ years and counting as a diagnosed T2.
As far as I can tell my insulin production is pretty low and I have mild insulin resistance.

I am slim T2.

The big question for me (not really answered up thread) is if my pancreas reduces the ability to produce insulin even further so that I gradually increase the variety of medication until I have to go onto insulin, am I then a T1 transitioned from T2?

What is the deciding factor?
 
LittleGreyCat said:
The big question for me (not really answered up thread) is if my pancreas reduces the ability to produce insulin even further so that I gradually increase the variety of medication until I have to go onto insulin, am I then a T1 transitioned from T2?

What is the deciding factor?
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The deciding factor is the cause.
T1 by definition is an autoimmune condition, where your immune system attacks the cells producing insulin, so a T2 progressing to insulin is a T2 on insulin.
There are many reasons people may need insulin, temporary or permanently: gestational diabetes, illness, steroids, eating pattern when T2, genetic conditions (MODY), damage to the pancreas (T3C), but this doesn't make them T1.

That said, lots of people are diagnosed with T1 without ever having had a test to see if they are making antibodies. Mostly because they are diagnosed as young children, but grown ups can get a T1 diagnosis without an antibodies test as well, it depends on their history.
 
By this definition I am type two because negative GAD, but now listed as type one, I don’t really understand why T1 has to be autoimmune, if you don’t produce insulin, you don’t produce insulin.

If you break your leg playing football or falling from a train, it’s still a broken leg.
 
What about if you are unfortunate enough to get pancreatic cancer that damages your pancreas, that wouldn’t be autoimmune but surely couldn’t be T2? Just thinking out loud.
 
I think that's called something different like type 3c?
 
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