# Adults being diagnosed with the wrong diabetes, study finds



## Northerner (Dec 1, 2017)

Many might think type 1 diabetes is a "disease of childhood", but research, published in the Lancet Diabetes & Endocrinology, has found it has similar prevalence in adults.

More than 40% of Britons diagnosed with the condition are over 30.

Many of these are initially diagnosed with type 2, and receiving the wrong treatment can be life-threatening.

Charity Diabetes UK is calling for doctors not to rule out the possibility a patient over 30 might have type 1.

http://www.bbc.co.uk/news/health-42179359

We are getting people coming here all the time who have been misdiagnosed


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## Robin (Dec 1, 2017)

There's a glaring error in the last paragraph.

_Helen was finally correctly diagnosed with type 2 diabetes after a year on the wrong treatment: "It's such a relief and it's made such a difference_.

No she wasn't, it was Type 1, and that was the whole point of the article!

Glad to see it being highlighted though, it says it normally takes a year for misdiagnosed Type 1s to get onto insulin, that was certainly the case with me.


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## everydayupsanddowns (Dec 1, 2017)

Ha! Brilliant @Robin well spotted. What a mistake to make!


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## Northerner (Dec 1, 2017)

I completely missed that @Robin! Well-spotted!  

p.s. I've written to them to correct them


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## mikeyB (Dec 1, 2017)

I hope this changes the attitudes of doctors and DSNs, it would have saved me and Robin, among quite a few of us, an awful lot of hassle, in my case just being given more tablets when I was presenting with BGs of 18-20 on a regular basis. And losing weight. Fortunately it was only around 6 months in total.


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## Northerner (Dec 1, 2017)

The article has been corrected now


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## Northerner (Dec 1, 2017)

There was a short interview on this topic:

*BBC Radio 4 **Today programme*(listen in from 52:50) http://www.bbc.co.uk/programmes/b09gbnjj

(you need to sign up/sign in to use iplayer now)

As I recall, Justin Webb's son has Type 1


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## SB2015 (Dec 1, 2017)

I am realising how fortunate I am to have been diagnosed with T1 straight away.  It took them a week before even considering Diabetes, and it was a locum that picked it up and then I was straight into hospital as the ketones were so high.  I still avoid any discussion of D with my GP, and if I was to be passed back from the hospital to Primary Care I would change GP.  However as I am on a pump I am assured that we will remain in the care of the local hospital. Phew.


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## mikeyB (Dec 1, 2017)

That is one advantage of moving to Englandshire. I could get a pump and be cared for within 8 miles, rather than a ferry crossing and 50 mile drive to Paisley.


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## stephknits (Dec 1, 2017)

Took me 10 months, loosing two and a half stone (was a size 10 to start with, so quite drastic loss)  and bs levels never below 10 for the last 6 months of that, despite drastic reduction of carb intake in a desperate bid to feel less terrible to get a change in diagnosis.


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## DaveB (Dec 1, 2017)

It took me about 5 years! I had a long honeymoon period and eventually the 320mg Gliclazide, 2000mg Metformin and Sitagliptin did nothing despite the low carb diet. What a pity DUK just ignored all the discussions on the main UK diabetes forums from members being LADA. I'd like to see DUK leading more in the future and not just following.


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## trophywench (Dec 1, 2017)

LOL - there is only ONE DUK forum - and this is it!  They've funded the bandwidth all along - but never used to grace us with their presence.  Things have changed A LOT these days!


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## HOBIE (Dec 2, 2017)

In my eyes Duk or BDA as it was in my first days have gone down-hill in lots of ways. Once I raised £1200 & was not allowed to say where the money was going, research ?. Millions raised with the help of Tesco & has anyone noticed where its gone ?


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## mikeyB (Dec 3, 2017)

Maybe you haven’t noticed where it’s gone because you haven’t looked in the right places, Hobie. There are lots of areas of research benefitting from help from DUK - and you, of course. Certainly Balance magazine gives news on such research. And on fundraising efforts.  I think you are being a bit unkind saying they are going downhill.


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## trophywench (Dec 3, 2017)

Personal Donations to a charity can't really be ring-fenced.

If I want to give em £1m for research on why two adults in our small cul de sac got diabetes, if that wasn't in their general parameters for research this year - then they don't have to.  They consider any relevant research applications and decide which ones have the most merit.  The applications are filtered through several committees before the Trustees make the final decisions - it's in their hands to ensure the dosh is spent wisely - and at the end of the day - THEY are reponsible should it not be and can be sued.  'Trustees Indemnity' is an essential form if insurance protection if we're asked or volunteer to serve in that capacity.  I do know about this - used to be part of my job to deal with such enquiries for underwriting and policy wordings, and now I am such a Trustee so it's very relevant !

If they need to spend it on whatever - coffee for the office workers, or printing - then they can as long as they don't do anything that's not in their Constitution and Rules. ie the amount spent has to be 'reasonable'.  (I often wonder if the man on the Clapham omnibus has a more modern alter ego?  Any barristers (no not barristas, LOL) out there?)


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## mikeyB (Dec 3, 2017)

I give £20 a month to DUK, have done for years, but I’ve never had any qualms about where it goes. I don’t care if they take a fiver out of that to pay for the staff and coffee, somebody has to pay for it. Nobody is making a fortune out of this, as I’m sure our DUK pals will confirm


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## HOBIE (Dec 3, 2017)

With Tesco help it was £26 million in two weekends. Yes they got there new office in London. mikeyB. They took over this forum ? I am on two committees for Duk & for years I've done charity things for Duk.  When Richard Lane was head we walked part of the  Roman Wall raising £25,000. That's a lot of coffee for staff is it not ?  Don't get me wrong but where is it going ? & well done for donating


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## Amigo (Dec 3, 2017)

HOBIE said:


> With Tesco help it was £26 million in two weekends. Yes they got there new office in London. mikeyB. They took over this forum ? I am on two committees for Duk & for years I've done charity things for Duk.  When Richard Lane was head we walked part of the  Roman Wall raising £25,000. That's a lot of coffee for staff is it not ?  Don't get me wrong but where is it going ? & well done for donating



Surely there’s accounts outlining what funds are being used for? Are you suggesting DUK are not being transparent in how they are using the monies raised Hobie?


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## mikeyB (Dec 3, 2017)

Why don’t you just ask them, Hobie? I’m sure the chief exec Chris Askew can live up to his name. And while you are waiting for an answer, think about who might have been applying pressure on NICE to allow insulin pumps to be prescribable, and flash glucose monitoring. That’s apart from any research being funded.


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## Northerner (Dec 4, 2017)

Here you go @HOBIE, this is the Annual Report for 2016:

https://www.diabetes.org.uk/About_us/Annual-reports/Annual-Report-2016

All the numbers are at the end of the report.


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## Greyhound Gal (Dec 4, 2017)

Just to steer back to the original topic. When I saw the TB consultant last week, he asked me when I was diagnosed with diabetes. When I told him he said you must be T2 not T1 as you were an adult. I replied, I think you'll find that over 40% of new T1 cases are diagnosed in people over 30, and gave him the name of my diabetes consultant in case he wished to speak to him!
Not sure how well that went down, but I wish they would stick to their own specialism and don't try and tell me about MY diabetes.


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## mikeyB (Dec 5, 2017)

My neurologist made the same mistake - he told me he assumed I was Type 2 because of the age of onset. This was important, because it changed his mindset from assuming I was a just a rotting metabolic syndrome type that he no doubt sees on a regular basis in Glasgae. So did the lack of sensory neuropathy and the spastic muscles. Oh, well, back on course now.


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## Amigo (Dec 5, 2017)

mikeyB said:


> My neurologist made the same mistake - he told me he assumed I was Type 2 because of the age of onset. This was important, because it changed his mindset from assuming I was a just a rotting metabolic syndrome type that he no doubt sees on a regular basis in Glasgae. So did the lack of sensory neuropathy and the spastic muscles. Oh, well, back on course now.



I’m just a ‘rotting metabolic syndrome type’ I’m afraid! 

(And yes I understand why the distinction is more important in your case Mike)


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## mikeyB (Dec 5, 2017)

You’re not a rotting metabolic syndrome type, Amigo, You’re just falling to bits, like me.


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## trophywench (Dec 5, 2017)

I might be both, but add tobacco addiction to the list!  LOL


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## trophywench (Dec 5, 2017)

Funnily enough we have been discussing Holistic Health self-Assessments for Prostate Cancer survivors who have now been 'discharged' from 'their hospital after X years trouble-free and are now under the care of their GP so now have to 'watch out' for themselves except for eg regular but not frequent blood tests, cos eg an annual PSA blood test should be on the surgery diary system same as our toe-tickling and retinal photography is, and you get reminders.

Nobody thereafter takes the time to ask you how you actually ARE - and because you don't have another actual appointment booked - maybe you don't discuss something that's only niggling/annoying you from time to time, but probably isn't a problem of earth shattering importance.

The idea is you have a list of set questions to ask yourself and if something is a bit of a prob, the program has advice on what you could (or indeed 'should' do about it now.

So then two of us on the committee - me and a retired District Nurse started asking questions.

We both said it's so so easy for so many of these 'things' to get  tunnel vision about whatever condition it happens to be - we see this constantly, eg on here - with things designed by students in the mistaken belief it will help diabetes patients in general (cos that's what it's designed to do) without the slightest idea what it's REALLY like to have diabetes droning on constantly for your entire life. 

Let's think about an ever present snag to blokes in both scenarios - ED - cos that one's easy to take on board.  Joe Soap has ED and Yes it does concern him if he's absolutely totally honest with himself.  And he's honest when he answers Yes to that section on either questionnaire.  Do the suggestions for action on either one ask him whether he already had it before he got whichever it is, or what caused it?  - cos the prostate cancer one doesn't concern itself with eg his diabetic control over the years nor the diabetes one ask if he's undergone a radical prostatectomy!

It's virtually impossible for a diabetic to get a doctor to believe that one big toe nerve on one foot popped its clogs when they dropped something heavy on their foot.  Or indeed - that their hardened arteries are mainly if not 100% self inflicted from smoking since their mid teens.


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## TheClockworkDodo (Dec 5, 2017)

trophywench said:


> It's virtually impossible for a diabetic to get a doctor to believe that one big toe nerve on one foot popped its clogs when they dropped something heavy on their foot.  Or indeed - that their hardened arteries are mainly if not 100% self inflicted from smoking since their mid teens.



Or that their inability to stop having hypos has to do with having ME which causes (among other things) a delayed reaction to even minimal levels of exercise for anything up to 48 hours ...

Going back to Greyhound Girl's post at the top of the page, I wish diabetes consultants would stick to their own specialism and not try and tell me about MY ME!


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## mikeyB (Dec 6, 2017)

Aye, Juliet, but you must realise that everything you’ve got is caused by “the diabetes”. That’s what I’ve been told many a time. “It’s your diabetes”. I’m going to have that engraved on my gravestone.


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## Northerner (Dec 6, 2017)

mikeyB said:


> Aye, Juliet, but you must realise that everything you’ve got is caused by “the diabetes”. That’s what I’ve been told many a time. “It’s your diabetes”. I’m going to have that engraved on my gravestone.


Hehe! That would rank alongside 'I told you I was ill'


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## trophywench (Dec 6, 2017)

TheClockworkDodo said:


> Or that their inability to stop having hypos has to do with having ME which causes (among other things) a delayed reaction to even minimal levels of exercise for anything up to 48 hours ...
> 
> Going back to Greyhound Girl's post at the top of the page, I wish diabetes consultants would stick to their own specialism and not try and tell me about MY ME!




Your talking ridiculous now - each of us is ONLY a group of symptoms - NOT a person!


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## TheClockworkDodo (Dec 6, 2017)

Oh yes, I forgot


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## Bloden (Dec 8, 2017)

Having read about other people’s experiences here, I feel incredibly lucky that my Spanish GP and her nurse diagnosed me as T1 immediately and sent me straight to A&E with a covering letter...phew! 

I like your style, @Greyhound Gal. I’ve been speaking up lately (instead of nodding and smiling) and it feels good, tee hee.


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## Greyhound Gal (Dec 9, 2017)




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