Why is it difficult to diagnose diabetes type?

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Amity Island

Amity Island

Well-Known Member
Relationship to Diabetes
Type 1
Hi Everyone,

As a regular on this forum it's become quite obvious that many people with diabetes struggle to get the right diagnosis on their "type" of Diabetes. As far as I understand it there are existing indicators/tests that can clearly show whether someone is type 1 or type 2 or other.

Can someone shed some light on the reasons why the correct diagnosis is so difficult? I mean we are all hoping for a cure one day, but a diagnosis would be a good start.

Thanks
 
Take a mate of mine and a moderator on another forum just like me. Middle aged on DX, T2. Tried every drug known to man for T2 and now happily on insulin - but since she self funds her Libre she decided it was about time she asked for a C-peptide test being as we all thought a very long time ago she's more likely to have been LADA all along, and she thought she might well be as well - but since she's now doing OK again has never pursued it. Now she'd rather know please.

Her GP has dismissed it out of hand because it's too expensive and neither her feelings nor the fact she's totally denied any funding for her Libre ever matter in the slightest to him. She actually burst into tears stood up and walked out - none of which is typically her behaviour.

So, Amity Island - it's PURELY money. Neither QOL or MH issues have any bearing on it whatsoever. We spend enough on you - so put up and shut up.
 
Unfortunately many GPs' knowledge of diabetes is quite limited (well they can't know everything about everything can they), and just assume that if you are over the age of about 25 at diagnosis then you must be type 2, which clearly isn't always the case, and I think some of the more unusual types like MODY, LADA etc haven't ever been heard of by many.
 
My GP strongly thinks that I am MODY, but I get treated as a type 2. The genetic test for MODY is expensive so they don't routinely do it. Id like to know one way or another, and if it means that I get the correct treatment all the better. But I think they are happy just treating me as a type 2.
 
MODY is Type 2, just as LADA is Type 1. They are just labels that reflect, almost as an excuse, Doctors confusion when thin folk of a certain age develop symptoms of Diabetes.
 
@mikeyB my consultant says that he suspects I am LADA but then he says he doesn't feel comfortable calling it type 1? I don't understand what he means by that, it seems such a minefield.
 
As part of the 2015 NICE guideline development thingy we looked into tests which could discriminate T1 from various other types of diabetes and it surprised me how inconclusive they were. Full of false positives and confounding factors.

Antibody tests can clearly show T1, as can c-Pep, however some people with T2 have antibodies, and some people who've had T1 for a while and splatted all their islets can stop producing much in the way of antibodies at all. Similarly people who've had T2 for a bit can have burnt out their islets (through overproduction overcoming insulin resistance??) and have quite a low c-peptide.

It's all much, much more confusing than I was expecting.

You get better results if you check for multiple antibodies, and (of course) if the duration of diabetes is shorter.

On the whole though, it seems that a clinical diagnosis taking into account family history, speed of onset, ketosis, weight, weight loss etc etc are more reliable than just running the tests.

The exception is MODY, which does have a more definitive test to confirm.
 
As others have indicated, there are few reliable tests for the various diabetes types and ignorance amongst many GPs about diabetes means they aren't even aware of the tests that can be done. To help distinguish between T1 and T2 in adulthood, the c-peptide test appears to be the most useful but not perfect. It enables the GP to know whether you have too much or too little insulin and hence the right treatment. Diagnosing the type isn't nearly as important as knowing the right treatment. I frequently see T1 defined as an autoimmune disease which is how GPs are trained to understand it yet beta cells can be killed by viruses and that isn't an auto-immune effect but the end result is the same. We need better tests, less stereotyped (guessed) diagnosis and to focus on the right treatment.
 
I was diagnosed at Addenbrookes - big, prestigious teaching hospital - and while I spent a week there on an insulin drip they must have done virtually every blood test known to medical science (some of them two or three times) ... except for the C-Peptide test. Apparently they don't bother with that one. A private specialist later asked me why no-one had ever tested to see whether I was actually producing any insulin, and when I passed the message on the endo at Addenbrookes got quite huffy about it, and said they don't do that test. She didn't say why (but presumably it's just too expensive). I was diagnosed on the basis of rapid weight loss/being underweight, DKA, and a GAD antibody test which was through the roof though, so they thought I was fairly obviously type 1. It must be infuriating when things are less obvious, being told "oh, there is a test which will show which type you are, but we don't do that one" 🙄
 
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