Scotland first in world to use new diabetes test

[ert]

Why would that be? These people would be on insulin for those 3 years, as I assume you were.

I could have been treated as a type 2 and given oral mediation if it wasn't for a c-peptide test. A lot of type 1's were diagnosed from a DKA admission to hospital.

 

[Member496333]

Basically without these tests everything is guesswork and could potentially result in suboptimal or even dangerous therapy for both deficient and resistant diabetics.

 

[Fairygodmother]

I confess that the strap line, “Some T1 diabetes patients could be freed from the need to take insulin” made me see red, it’s bad reporting.
The new, simpler test does seem better. I was diagnosed in 1969 but didn’t have a c-peptide test until 1978 when I was pregnant. If it’s widely rolled out, with good explanations, then it could save a lot of people from being unsure of their status.

 

[KK123]

I could have been treated as a type 2 and given oral mediation if it wasn't for a c-peptide test. A lot of type 1's were diagnosed from a DKA admission to hospital.

I was one of them to a large extent. Diagnosed with 'pre diabetes' at a routine well woman check aged 52, did not fit the so called profile of being 'pre type 2' other than by age. Not a single further test done, sent off with vague instructions about lifestyle changes even though I was thin/ran 5 miles a day/non smoker/non drinker and a 'healthy' eater etc, I say this for context because they were clearly stereotyping like mad.

Roll on 3 years, became very ill, rushed off to hospital with glucose levels off the charts and ketones on the verge of DKA, still felt fine all the way through it. After much um'ing and ah'ing between consultants as I still did not fit their view of what a type 2 looks like, they did the extra tests of C Peptide & antibodies but that was only after a certain Consultant absolutely insisted. As you say ert, they could easily not have bothered in the same way they didn't bother to begin with.

It was confirmed I was a slow onset type 1 but I know that had I been anything other than very slim they would still not have done those other tests.. They mumbled something about me probably being in the honeymoon period for those first 3 undiagnosed years and so had managed to cope without insulin but who knows what damage was being caused. How many people has this happened to I wonder, written off as a type based purely on speculation. They really should do a C Peptide test in every person presenting with diabetes symptoms no matter the age or whether they are overweight or not. It would be easy for a C peptide test not to be done and common enough for a person to struggle on without insulin for 3 plus years.

 

[ert]

Hmm, looks to me that they are just giving it to people who've been diagnosed with T1 for 3 years, ...

At least three years means 3 years or longer. It was offered to everyone who had type 1 for at least 3 years ie 3 years or longer here:
https://www.exeter.ac.uk/news/featurednews/title_707155_en.html

 

[Fairygodmother]

Many of the dangerous mistakes can occur during very early days as with @KK123’s experience; is there a valid reason to wait as long as 3 years?

 

[Ushthetaff]

I live in Scotland and have had type 1 diabetes for over 40 years , to be honest I don’t know what it would mean to me but I do know is I wouldn’t want to be type 2 as I think it’s far more restrictive in what I could eat and I love eating , right now I can eat what I want when I want and can adjust my insulin to suit it’s a mile away from what type 1 was when I first was diagnosed , I have total respect and sympathy for all type 2s who have to rely on their diet to control their condition , this as always is totally my opinion , I don’t think my body is or ever has produced any insulin since I was diagnosed in 1979 , I’ve never had a C peptide test and to be honest when I got type 1 it would have probably even in a bottle as an alternative to coke cola ,
Oh and as a side note Scotland is an absolutely wonderful place

 

[dancer]

A couple of years ago my "Type 2" brother in his 70s was having real problems with his BG control. I'm in Scotland but he is in the South of England. I told him to ask for a C-Peptide test to see how much insulin he was actually producing. At his next appointment with his so-called diabetes specialist nurse, at his GP practice, he asked about the test. The nurse said she'd never heard of it and maybe it was a test only used in Scotland.
A few weeks later he asked to be referred to the hospital . The nurse told him to wait till his GP returned from holiday but he insisted that another GP should refer him that day. The hospital said they'd never seen a patient still standing, with blood sugar and ketones that high. He was rediagnosed as Type 1.5 and put onto insulin. He has been feeling wonderful since then. He had been misdiagnosed for over 10 years. A C-Peptide test would have prevented a lot of misery and weight loss.

 

[Mr_Pot]

I am a diet controlled T2, my only knowledge of T1 is secondhand so forgive my question.
If a young, slim person presents with diabetes then they could be mistakenly diagnosed as T1 although they were T2, due to stereotyping. My question is: wouldn't the presumably low dose of Insulin required to bring their HbA1c in range raise suspicion about the diagnosis?

 

[LittleGreyCat]

I think that T2s should also be tested on or soon after diagnosis, and if possible classified as insulin over producers or normal/under producers.
The treatment approach could be different, and the setting of expectations could also be different.

Massively over producing insulin; go all out to tackle insulin resistance with the carrot that a swift intervention could lead to full remission.

Under producing insulin - long term strategy to alter eating profile to nurture the remaining Beta cells with the knowledge that remission is unlikely but long term control with minimal drugs is possible.

Assessment of Insulin Resistance is also very important.
Someone over producing insulin because of high IR is unlikely to be helped by adding in injected insulin.
Someone under producing insulin with low IR might consider adding injected insulin to help out the failing pancreas.
[Noting that I'm not keen on this despite being a slim T2.]

I don't believe the old mantra of "It doesn't really matter because the treatment is the same.".

 

[Oldvatr]

It is not a new test apparently. It is a new protocol to be applied to confirm T1D diagnosis. The application to all T1D of 3 years standing is 'new' but the Dutch already do this in their pediatric settings I think the blood test is the standard C-peptide blood test, and is not the urine test which can also be used (UCPCR), and which is easier and cheaper to do but presumably less accurate.

Correction: information obtained after this post show it is a new test method being introduced, and this post of mine should be ignored.

 

[KK123]

I am a diet controlled T2, my only knowledge of T1 is secondhand so forgive my question.
If a young, slim person presents with diabetes then they could be mistakenly diagnosed as T1 although they were T2, due to stereotyping. My question is: wouldn't the presumably low dose of Insulin required to bring their HbA1c in range raise suspicion about the diagnosis?

Hi Mr Pot, I was started on a low dose of insulin and am still on it and it is currently keeping my hb1ac within range. I'm not a young person so forgive me if you are actually referring to children/young adults. I don't know of any case personally where a person suspected of being type 1 in any circumstances would have been diagnosed without the necessary type1 tests and then sent off with insulin, whereas 'type 2s' mainly get diagnosed based on age & appearance and NO tests (wrongly in my view), but anyone suspected of being type 1 would not be told 'yep, you look like a type 1, here's some insulin' as that could turn out critical and the person could die from an insulin overdose. Type 1s are never diagnosed based on appearance only. Also, newly diagnosed type 1s often have a honeymoon period that could last years and years so during that time, their insulin dosage could well remain low, up to the point when their beta cells finally die off. LADA could play a part here too, which is also type 1. Also an individuals insulin requirements differ massively from person to person, some take a few units, others need 100s at a time, none of that really indicates a suspicion about diagnosis. Having said all that, mistakes are made but because any suspicion of type 1 necessitates those extra tests when a decision is being made about type, a mistake is far less likely than the other way round.

 

[Mr_Pot]

Hi Mr Pot, I was started on a low dose of insulin and am still on it and it is currently keeping my hb1ac within range. I'm not a young person so forgive me if you are actually referring to children/young adults. I don't know of any case personally where a person suspected of being type 1 in any circumstances would have been diagnosed without the necessary type1 tests and then sent off with insulin, whereas 'type 2s' mainly get diagnosed based on age & appearance and NO tests (wrongly in my view), but anyone suspected of being type 1 would not be told 'yep, you look like a type 1, here's some insulin' as that could turn out critical and the person could die from an insulin overdose. Type 1s are never diagnosed based on appearance only. Also, newly diagnosed type 1s often have a honeymoon period that could last years and years so during that time, their insulin dosage could well remain low, up to the point when their beta cells finally die off. LADA could play a part here too, which is also type 1. Also an individuals insulin requirements differ massively from person to person, some take a few units, others need 100s at a time, none of that really indicates a suspicion about diagnosis. Having said all that, mistakes are made but because any suspicion of type 1 necessitates those extra tests when a decision is being made about type, a mistake is far less likely than the other way round.

Thanks for the helpful reply but doesn't the fact that the NHS Lothian investigation was able to identify T1's who were really T2 show that they weren't tested on diagnosis?

 

[ert]

Thanks for the helpful reply but doesn't the fact that the NHS Lothian investigation was able to identify T1's who were really T2 show that they weren't tested on diagnosis?

A type 1 with little insulin resistance will be on low insulin doses (like me). Some type 2's with high insulin resistance may be on low insulin doses if they are producing high levels of insulin themselves. So it would be hard to tell these apart without a c-peptide test.

 

[KK123]

Thanks for the helpful reply but doesn't the fact that the NHS Lothian investigation was able to identify T1's who were really T2 show that they weren't tested on diagnosis?

Hi there, my understanding is that they were tested on diagnosis using the C Peptide to establish how much insulin they were producing and if they produced a 'low' amount it was deemed that they did actually need insulin as a 'type 1' would so type 1 they were, bearing in mind of course that even with low insulin production and antibodies or lack of them doesn't mean they will ever say '100%, this is your diagnosis, they use it as a (probably fairly strong) guide.3 years later I'm guessing a further test might show the person was still producing their own high enough levels of insulin and isn't it this category that they are saying were type 2 all along? It's very complicated that's for sure and there must obviously be so many inbetween variations. I remember being told that if you were already taking insulin a C Peptide is of lesser value because it allows your body to produce less, and the C Peptide produces an amount on a par with your own natural insulin. I wonder how they square that with a C Peptide test taken after 3 years worth of injected insulin?

(Edited to add, I've just had a quick read of this article and the original article seems to be saying this test identified 'genetic diabetes' in someone who was thus able to come off insulin and 'some type 2s' who were misdiagnosed in the first place, I'm guessing those type 2s were probably producing low end of normal insulin which although can indicate type 1, it can also indicate a type 2, after all what does 'normal' really mean and although type 2s often overproduce insulin, I'm guessing not all of them do).

 

[SaskiaKC]

"Scotland will become the first country in the world to use the simple C-peptide blood test."

https://www.bbc.co.uk/news/uk-scotland-59095948

Sounds good but if it works we will all have to move to Scotland iat the moment f we want to avail ouselves of it.

I'm in.

 

[Mr_Pot]

Hi there, my understanding is that they were tested on diagnosis using the C Peptide to establish how much insulin they were producing and if they produced a 'low' amount it was deemed that they did actually need insulin as a 'type 1' would so type 1 they were, bearing in mind of course that even with low insulin production and antibodies or lack of them doesn't mean they will ever say '100%, this is your diagnosis, they use it as a (probably fairly strong) guide.3 years later I'm guessing a further test might show the person was still producing their own high enough levels of insulin and isn't it this category that they are saying were type 2 all along? It's very complicated that's for sure and there must obviously be so many inbetween variations. I remember being told that if you were already taking insulin a C Peptide is of lesser value because it allows your body to produce less, and the C Peptide produces an amount on a par with your own natural insulin. I wonder how they square that with a C Peptide test taken after 3 years worth of injected insulin?

(Edited to add, I've just had a quick read of this article and the original article seems to be saying this test identified 'genetic diabetes' in someone who was thus able to come off insulin and 'some type 2s' who were misdiagnosed in the first place, I'm guessing those type 2s were probably producing low end of normal insulin which although can indicate type 1, it can also indicate a type 2, after all what does 'normal' really mean and although type 2s often overproduce insulin, I'm guessing not all of them do).

Although the article talks about a new test, I think it means a new version of the test that is cheap enough and able to be done by GPs. This enables mass testing of T1s to confirm their diagnosis after at least 3 years. I assume this means that the initial c-peptide test can sometimes be inconclusive and not the yes/no result that some people claim.

 

[KK123]

Although the article talks about a new test, I think it means a new version of the test that is cheap enough and able to be done by GPs. This enables mass testing of T1s to confirm their diagnosis after at least 3 years. I assume this means that the initial c-peptide test can sometimes be inconclusive and not the yes/no result that some people claim.

Hi, I agree with you. The C Peptide test, according to my Consultant is not the be all and end all of the diagnosis procedure. It's just one measure that can be taken into overall consideration, along with the various antibody tests and general presentation. I remember 'demanding' one when they were assessing me as I didn't fit the so called, stereotypical type 2 criteria etc, and he said all that tells us is how much insulin you are still producing which on its own can go either way for a diagnosis. I did have positive GAD antibodies but again some type 1s don't, and some type 2s do and even non diabetics can have these antibodies. I actually wondered further along (4 years later) whether I was still producing insulin, I think I must be because my insulin requirements are still low so I'm still in the honeymoon period...I think. I'd love another C Peptide test to see what's going on. All very interesting, great thread by @JohnEGreen. I think they need to be very careful about how they promote this test though because some of the articles are practically saying 'New test cures type 1'.

 

[Member496333]

Whether or not a test/tests provide a yes or no answer is kind of immaterial if you don’t measure anything at all.

 

[Dark Horse]

No, it seems to be the original C-peptide test. The BBC article clearly states that it is available fron hospital diabetes centres only, not by the GP. Most GP's can take bloods, but the blood analysis is usually done by a specialist lab outside the practice. The test protocol is new, the test is not.

Agreed that the protocol is new but an article from Exeter University suggests that it is a new test:-

"Researchers at the University of Exeter Medical School have developed simple and inexpensive ways to measure C-peptide and have demonstrated that this test can show what treatment will be most effective for people with diabetes. Clinicians at the Western General Hospital in Edinburgh have used the new test on every person thought to have type 1 diabetes for over three years in their clinic and shown that some actually have other types of diabetes and can stop insulin treatment."
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The article also says:-

"The new test is already in available in most NHS trusts, and is now offered to everyone diagnosed as Type 1 diabetes for at least 3 years in Glasgow and Edinburgh."
https://www.exeter.ac.uk/news/featurednews/title_707155_en.html
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