Hello, I’m glad I have found this place

[everydayupsanddowns]

These tests are apparently not that easy to interpret. As @mashedupmatt notes the antibody test isn't definitive (you may just not have the antibodies any more, or you may have antibodies they're not testing for) and the C-Peptide test takes interpretation (sometimes). It's apparently quite tricky (at least in some cases) to be definitive about the type and I think the guidance is to use a combination of these tests and a combination of other factors.

Yes I was surprised how flaky the these tests were considered to be when I was on the GDG for the NICE T1 Guideline update in 2015. I’d always had the impression that they were pretty straightforward if they were needed, but learned that the checks don’t have very good sensitivity or specificity, and the best indication for a T1 diagnosis is still the clinical factors in the presentation. The NICE guideline only recommends them in particular circumstances, and says they shouldn’t be used routinely.

 

[Elliott]

Thanks all for the replies.

All though it is as still very early days, I was getting my head around it being T1 and then to be told that today just left me confused.

Can I ask, what clinical factors would lead them to believe it is type 1?

 

[Inka]

It would be a consultant opinion @Elliott so they’d use their medical expertise and experience, but things like weight, family history, insulin dose, C Peptide (if done), etc.

 

[everydayupsanddowns]

Can I ask, what clinical factors would lead them to believe it is type 1?

The NICE Clinical Guideline for T1 Diabetes in Adults suggests these things for an initial diagnosis with T1 (there are further sections where uncertainty continues)

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

1.1.3​

Take into consideration the possibility of other diabetes subtypes and revisit the diagnosis at subsequent clinical reviews. Carry out further investigations if there is uncertainty (see recommendations 1.1.7 and 1.1.8). [2022]

1.1.4​

Measure diabetes-specific autoantibodies in adults with an initial diagnosis of type 1 diabetes, taking into account that:

• the false negative rate of diabetes-specific autoantibody tests is lowest at the time of diagnosis
• the false negative rate can be reduced by carrying out quantitative tests for 2 different diabetes-specific autoantibodies (with at least 1 being positive). [2022]

1.1.5​

Do not routinely measure serum C‑peptide to confirm type 1 diabetes in adults. [2022]

1.1.6​

In people with a negative diabetes-specific autoantibody result, and if diabetes classification remains uncertain, consider measuring non-fasting serum C‑peptide (with a paired blood glucose). [2022]

 

[Elliott]

Thank you for that post @everydayupsanddowns

I can see why they suspect I am T1.
I had lost a stone and a half quite quickly (I had just put this down to going through surgery for the infected abscess I had)
I am under 50 and my mother had an autoimmune disease

Hopefully soon I will have some answers 🙂

 

[trophywench]

It can take quite a bit longer than a few days to get results for some of the tests. More specialist tests (as some that apply here are) these days are sent by hospitals to specialist laboratory 'hubs'. Despite having Type 1 diabetes for 50+years and hundreds of blood tests over that time, at the end of last year something entirely different was occurring with my blood so I was referred to Haematology at the same hospital - not a department either of us (husband and I) had any prior knowledge of, although yes we knew it existed and a little bit of what they did.

UHCW is a large Teaching Hospital, medical students from both Warwick and Coventry universities and also from wider afield of course. The H Department not only treat some of their patients as In Patients as one would expect, but also any number just depending on exactly what it is, as Out Patients eg for a few hours regularly every so often. Certain blood tests they even test themselves without even having to take the vial(s) of blood to the Path Lab within the same hospital.

I was amazed when I went back to see the very same lady consultant Dr exactly 4 weeks later to get my results for her to say that they'd had the test result back from Birmingham which confirmed what my Diabetes Consultant thought it could possibly be and she'd suspected he was correct hence why she'd been quite happy to see me PDQ - and it turned out it was what they thought so now it's a medical 'watch and wait' situation although the profession no longer use the W &W phraseology so I'm having 'Active Monitoring' for it via my GP. (except sadly our GP surgery who used to be utterly excellent and got awards for it no longer are so the patient has to keep a note from one year to the next, in order to remind them their test(s) are due.

 

[Elliott]

Just another wee update, I was phoned today by the diabetes team and they are treating me as type 2.

Will be starting pills soon, Metformin and will still be using insulin in the meantime. Hopefully I get on ok with the Metformin.

They also confirmed there was no C peptide test done, advising they would normally do this around the 12 month mark

 

[mashedupmatt]

They also confirmed there was no C peptide test done, advising they would normally do this around the 12 month mark

That's interesting as in the research recommendations in the same NICE Guidance that @everydayupsanddowns has kindly shared, it clearly says that one should be considered if the auto-antibody tests come back as negative but you are showing all of the other clinical presentations of Type 1 but hey, I'm no medical expert - good luck with the Metformin when they put you on it and hope it helps - let us know how you get on