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38 per cent of adults with type 1 diabetes are misdiagnosed with type 2

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Nearly 40 per cent of adults with type 1 diabetes were misdiagnosed and were initially treated for type 2 diabetes, according to new research. The University of Exeter study found a third of those they analysed were not given insulin, instead they received medication indicated for those with type 2 diabetes. Further analysis found that half of those misdiagnosed were still being treated as though they have type 2 diabetes 13 years later. Currently, guidance from the National Institute for Health and Care Excellence (NICE) for the diagnosis of diabetes does not recommend rigorous testing to differentiate between type 1 and type 2 in adults. Lead researcher Dr Angus Jones, from the University of Exeter Medical School, said: "For people with type 1 diabetes, taking tablets and losing weight are not effective - they need insulin treatment. "Our research shows that if a person diagnosed as type 2 diabetes needs insulin treatment within three years of diabetes diagnosis, they have a high chance of missed type 1 diabetes. Therefore, they need a blood test to confirm what type of diabetes they have, to ensure they receive the right monitoring, education and treatment." This study highlights how common misdiagnosing the type of diabetes in adults can be. One high-profile case saw Prime Minister Theresa May, misdiagnosed. She was given type 2 diabetes tablets and lifestyle advice which did not work, and it was only once she was re-tested that doctors discovered she actually had type 1 diabetes. First study author Dr Nick Thomas, also from the University of Exeter Medical School, said: "While people with type 2 diabetes may eventually need insulin, their treatment and education is very different from type 1. "If people with type 1 diabetes don't receive insulin they can develop very high blood glucose, and may develop a life threatening condition called ketoacidosis. This means having the right diagnosis is vitally important even if insulin treatment has already been started." A further problem with long-standing misdiagnosis is that consistently high glucose levels, from not having the right treatment, can greatly increase the risk of developing additional long-term complications such as amputation and heart, eye, kidney and nerve disease. These complications significantly impact upon quality of life as well as presenting significant cost for the NHS. The research could prompt greater consideration of which type of diabetes is present following a diagnosis of diabetes. The study has been published in the Diabetologia journal.

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You'd think that testing would be Diabetes 101. The mind boggles.
 
This is shocking indeed.

I think that the words we are using for both these diseases probably needs an overhaul - the confusion between the two different kinds of diabetes is so huge it is even endemic in the medical profession! To the extent they are not even testing for two very different physiological realities, even though presenting with the same initial symptom of high blood glucose.

38%? Golly gee! Something has to change and the sooner the better.
 
Guzzler said:
You'd think that testing would be Diabetes 101. The mind boggles.
Click to expand...

The standard of care for diabetes on the whole is a bit of a joke, really. Still amazes me every day. I think sooner or later I’m just going to have to accept that it’s all a ****** mess and stop caring
 
I am just entering my 5th year as a diagnosed diabetic. I am 41 years old and have never been overweight. Diagnoses was following a routine blood test and myself and gp were shocked. Diet & exercise did nothing, metformin did nothing, insulin treatment (as it is) does nothing....every single time my hba1c increased. My last was 117. I am finally now under the care of a consultant who in our first meeting last month told me I had all the signs of a type 1 including markers shown in my blood test which are only present in a type 1 diabetics. Now awaiting results of cpeptide and gad tests.
 
Maybe I'm being dim here, but....

Supposedly the ratio of T1 to T2 is 10 to 100.
But if 40% of those T1s are misdiagnosed as T2 initially, it means that approximately 4 in every 100 T2s has actually got T1, so about 4%.

That is a mind blowing article which should probably be shown to every new T2 posting on these boards. I thought I was going over the top in urging a test for T1 every time a T2 seems to need insulin early in the game, but maybe not. I start to wonder just how many insulin dependant T2s have been incorrectly diagnosed....
 
I was the other way around a couple of years ago. At the DSN appointment at my surgery, she noticed on her screen that I was type 2, I said no that's not right, you must be looking at another patient, she said no and showed me, there it was, changed to *Late Onset Type 2, my new GP had changed it and I had never even met him !! DSN then said my GP was very knowledgeable about diabetes and she also said Type 1 only happens in children and young adolescents I told her that was incorrect Hospital said to ignore it
 
I keep quoting the nice guidelines after I faithfully read in their entirety last week. If Type 1 is suspected they apparently don’t advise doing confirmatory tests for 6 months. As early on they can be skewed and give incorrect results. I was incorrectly diagnosed by GP because of age and ended up in A and E. luckily the consultant whom I saw within hours disagreed.
 

Just a point on this. As an insulin resistant T2 I made the decision early on that if a HCP suggested hypoglycaemic treatments I would insist on a c-peptide test before agreeing. This is the only test (to my knowledge) that is done to assess insulin production on the NHS (a proxy marker but the only one available without going private). As has been said many times here treating hyperinsulinaemia with insulin is just not logical. We cannot be alone in having worked out that definitive diagnosis using results garnered from appropriate tests should be gold standard irrespective of cost.
 
I’m so glad I am a diet-only T2. It affords me the luxury of pretty much ignoring all standard of care. If I were autoimmune and actually needed the system to be competent, I’d probably have exploded with rage a long time ago.
 
I'm one of the misdiagnosed, stole quite a few years of my life.
 
Another misdiagnosed by the GP surgery based on my age. I'd lost so much weight when I got the appointment I looked awful so when they started blabbering on about managing it via diet I laughed.

Went home and correctly diagnosed myself via Google in 10 mins. Should have gone to A&E then rather than faffing around with the practice nurse for 2 more weeks. By the time I did get to A&E I was really sick with very elevated potassium levels.
 
kitedoc said:
The pressure on doctors to not order expensive tests does have its drawbacks.
But one has to ask who are these tests (or lack of doing them) expensive to ?
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Yes indeed. I get my C-peptides tested fairly regularly, since reading about it a few years ago, due to my being severely insulin resistant, and to varying degrees for over 30 years - so I reckon I am owed! (I need to know what is happening with my insulin to find out if f my experiments are working for me, as in keeping my insulin levels as normal as possible as opposed to too high.) But, at one of my practices I do have to justify it. so in the course of my own research I found out roughly how much an amputation costs (NZ$100,00 - surgeons earn well!, and includes the whole kit and kaboodle of equipment and aftercare), and I say, "and kidney dialysis is not cheap" - which is an understatement I think. (I found it harder to put a price tag on that one.) The nurse taking my blood did nod sagely the last time I had to say it. I find it disgusting that I am having to justify a test that is a crucial part of the diabetic picture - for all kinds of diabetics, with how much I would cost otherwise, when it is really the cost of misery and pain and too early death to organ failure which should be considered, not dollars and cents. But there you are.
 
The stories above of wrong diagnosis, and for years, and even stubborn misdiagnoses after the fact, of those with auto-immune diabetes is truly gobsmacking. Shocking. Confirms my thoughts that ignorance and confusion in the actual medical community, let alone in the general population, on the difference between metabolic and autoimmune diabetes is rife. Just too awful.
 

Personally I think this justice a formal complaint to the GMC about the GP.
 
Has anyone here had a medic calculate their homa=IR result (using plasma insulin and glucose levels) to diagnose insulin resistance? Could differentiate between late onset type 1 (may be less acute than the child onset variety) and classic type 2/pre diabetes or even those with hyperinsuliaemia.
Agree that is key to get an early and correct diagnosis not just for the obvious reasons but because it may be possible to retain existing beta cells if you switch to a low carb diet (according to Dr Bernstein).
I don't think using GAD or C peptide is necessarily just about cost but could be because they can be inconclusive.
https://www.dtu.ox.ac.uk/homacalculator/ if anyone is interested.
 
As far as I know HOMA-IR isn't done on the NHS.
 
I was told I needed insulin but they were reluctant to start me because it was so expensive, I have read it isnt actually that expensive so dont understand why they would say it. (It actually suited me as I was scaredof it) Im sure whatever the reasons for this problem is all about money, what isnt? For me personally I wished I had been given insulin years earlier, it would have saved me an awful lot of wasted pointless effort
 
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