Confusion About Type 1 Diagnosis Blood Results From Lab

[pm133]

I'm a bit confused by a conversation I've just had with my DN.

I've been diagnosed Type 1 because the treatment for Type 2 didn't seem to work at bringing down my BG levels and keeping them low.
They took blood samples which went to Exeter to confirm Type 1 but all tests came back negative.
My DN still wants to treat me as Type 1 and says that the results are very inaccurate especially in older people (50+).

I don't really know what to make of this.

Has anyone else had this sort of result and are the tests really as unreliable as that?
Could I actually be a misdiagnosed Type 2 ?

I'll email my GP to get her view but wanted to see what people on here thought.

 

[Inka]

Exeter is the place for testing for MODY (genetic forms of diabetes) amongst other things. Do you know what tests you actually had done?

If it was for the antibodies, I believe some late-onset/LADA Type 1s don’t have them occasionally.

 

[pm133]

Exeter is the place for testing for MODY (genetic forms of diabetes) amongst other things. Do you know what tests you actually had done?

If it was for the antibodies, I believe some late-onset/LADA Type 1s don’t have them occasionally.

I think they tested for antibodies because I'm sure we spoke about it in advance.

 

[rebrascora]

As I understand it one of the tests is only done at a few labs, Exeter being the main one. The results in themselves are not always conclusive and need to be assessed by a consultant who will have the experience to take other factors into account before coming to a diagnosis. Most nurses and GPs don't have the experience to interpret the results and come to any meaningful conclusion, but it may be that your DN has been in consultation with a specialist.

 

[grovesy]

I would have thought if the treatment is working stick with it. Not everybody has detectable antibodies.

 

[Inka]

I think they tested for antibodies because I'm sure we spoke about it in advance.

Ok, best to check though - well, I would, at least. I like to know 🙂

If it was antibodies, I’m sure I read that a proportion of people won’t have any. I wish I could find the statistics. But, as said above, I’d be guided by your consultant and DN.

 

[pm133]

My GP is just off the phone about an hour go and confirmed that they tested for antibodies and a few other things which I've already forgotten and all came back negative.
The amount of insulin I'm having to take to keep my sugars in good check suggests that we're on the right tracks. Going to pills wouldn't be enough to keep control. It would be different if I was only on a few units of bolus per day but requiring 30 bolus and 22 basal to cope with 200g of carbs is forcing our hand.
To be honest, I think I just wanted a second opinion for a bit of comfort.

I feel a lot better about it now.
AND on the positive side, a prescription of delicious painkillers will be coming my way in a couple of days so that's great news.
I really can't fault either my DN or my GP in the way they've looked after me since diagnosis last month.

 

[pm133]

Thanks to everyone for your responses. 🙂

 

[DaveB]

Hi. Do you know whether they did a C-Peptide test? Exeter can do this test. Many T1s will fail antibody tests partly because there are other things that can cause T1 and also the longer the time left after diagnosis the more GAD results will be negative.

 

[SB2015]

Hi @pm133 as others have said the GAD antibody test can be confusing.

A c-peptide test would show how much insulin your body is making. They often don’t do this test, as I guess that it is expensive. Also in some areas would only be initiated by a Consultant and not a GP. You could ask about this at your next appointment or sooner if you’re u are worried.

It certainly sounds from all that you have said, and the impact of the treatment that you are now on that T1 is the correct diagnosis. It sounds as if you are getting to grips with it all, and it is working.
Good news about the painkillers prescription.

 

[pm133]

Hi. Do you know whether they did a C-Peptide test? Exeter can do this test. Many T1s will fail antibody tests partly because there are other things that can cause T1 and also the longer the time left after diagnosis the more GAD results will be negative.

I think so but I can't remember what she said last night.
Despite this, both her and my DN are still happy with the T1 diagnosis and don't seem overly fussed about the negative results so that's put my mind at ease.

 

[pm133]

Hi @pm133 as others have said the GAD antibody test can be confusing.

A c-peptide test would show how much insulin your body is making. They often don’t do this test, as I guess that it is expensive. Also in some areas would only be initiated by a Consultant and not a GP. You could ask about this at your next appointment or sooner if you’re u are worried.

It certainly sounds from all that you have said, and the impact of the treatment that you are now on that T1 is the correct diagnosis. It sounds as if you are getting to grips with it all, and it is working.
Good news about the painkillers prescription.

Yes things seem to be settling down now and I'm feeling a lot better about things. I'm pretty sure she mentioned c-peptide last night but I'll ask again the next time we speak.

 

[DaveB]

Hi @pm133 as others have said the GAD antibody test can be confusing.

A c-peptide test would show how much insulin your body is making. They often don’t do this test, as I guess that it is expensive. Also in some areas would only be initiated by a Consultant and not a GP. You could ask about this at your next appointment or sooner if you’re u are worried.

It certainly sounds from all that you have said, and the impact of the treatment that you are now on that T1 is the correct diagnosis. It sounds as if you are getting to grips with it all, and it is working.
Good news about the painkillers prescription.

It appears that it isn't an expensive test. Here is an interesting link to the Exeter lab info:

Research news - Simple, cheap C-Peptide helps patients get the right diabetes diagnosis and treatment - University of Exeter

www.exeter.ac.uk

 

[grovesy]

Yeah but I would be suprised if it's been rolled out everywhere.

 

[trophywench]

They can certainly do it in more than only Exeter now; according to a phlebotomy trainer at UHCW I know they can do it these days anyway, cos I asked her one day last year.

 

[Piglet]

Hi,

You said in your original post that your original treatment for type 2 was not working so they are now treating you as a type 1.

This is a common misconception for people and some in the medical profession. Type 2 patients are quite often moved onto an insulin regime alongside their type 2 medications . This is because the condition is a progressive degenerative condition and the longer you have it the worse it gets, and tablet medication can only work so far. If your original tests confirmed a type 2 diagnosis, you will still be a type 2, just a type 2 treated with insulin. Hope this helps

 

[silentsquirrel]

Hi,

You said in your original post that your original treatment for type 2 was not working so they are now treating you as a type 1.

This is a common misconception for people and some in the medical profession. Type 2 patients are quite often moved onto an insulin regime alongside their type 2 medications . This is because the condition is a progressive degenerative condition and the longer you have it the worse it gets, and tablet medication can only work so far. If your original tests confirmed a type 2 diagnosis, you will still be a type 2, just a type 2 treated with insulin. Hope this helps

I think you may not have seen @pm133 's first thread - the original treatment for T2 was very, very brief!

Newly Diagnosed Type 1

Diagnosed as Type 1 a couple of weeks ago. I've read some horror stories about the level of care provided but honestly I couldn't have asked for more from the NHS. Filled in an online form for my local GP on the Saturday describing my symptoms. First thing Monday I got a call asking me to come...

forum.diabetes.org.uk

 

[pm133]

Hi,

You said in your original post that your original treatment for type 2 was not working so they are now treating you as a type 1.

This is a common misconception for people and some in the medical profession. Type 2 patients are quite often moved onto an insulin regime alongside their type 2 medications . This is because the condition is a progressive degenerative condition and the longer you have it the worse it gets, and tablet medication can only work so far. If your original tests confirmed a type 2 diagnosis, you will still be a type 2, just a type 2 treated with insulin. Hope this helps

My original tests didn't confirm Type 2.
The pill they gave me dropped my blood sugar a little overnight and then during the following day it soared back up again. That, alongside the rapid weight loss, convinced them I was Type 1 and they immediately gave me insulin and that worked straight away.

I don't suppose it really matters given that I can't avoid using insulin now anyway. Not having a definitive lab result was just a bit unsettling but I'm fine now and happy to accept the Type 1 diagnosis.