# Apparently I'm not type 1!!



## ypauly (Oct 3, 2010)

Had an appointment friday at my new GP's surgery with the practice nurse, all new patients have to do this. But whilst in there I was told I couldn't possibly be type 1 as being 37 years old when diagnosed means i'm type 2

It was an interesting first meeting I pointed out that a diabetic specialist nusre sitting with a consultant definitly told me I was type 1 but she didn't believe it lol.

Anyway I have still got to see the doctor in order to get my prescriptions, but first impression isn't good.

Isn't the NHS wonderful


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## Steff (Oct 3, 2010)

How weird, how long have you been diagnosed again Paul?


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## bex123 (Oct 3, 2010)

that is bizzare! dont get me started on the nhs lol 
like steffie said how long have u been diagnosed? personally i would phone you dsn and explain the situation , as if you are type 1 and they start messing about at your gp surgary it can make life seriously difficult , ask your dsn to phone the practice nurse at you dr's and talk to her ,


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## Andy HB (Oct 3, 2010)

I'm beginning to think that I'm less and less interested in Type 1/Type 1.5/Type 2/Type Whatever classifications!

I think that it just boils down to how much insulin the pancreas produces and what the insulin resistance levels are. It's that which fundamentally defines the treatment required, not some arbitrary naming convention.

Andy


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## ypauly (Oct 3, 2010)

I was diagnosed type1 last october, My GP, DSN and a consultant all sat with me going through blood test results and all said type 1.

But some nurse at the new practice I have gone to knows a lot more



It will be fun, I have an appointment with the consultant on the 6th december and top of the list I will be telling him he WAS WRONG lol


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## ypauly (Oct 3, 2010)

Andy HB said:


> I'm beginning to think that I'm less and less interested in Type 1/Type 1.5/Type 2/Type Whatever classifications!
> 
> I think that it just boils down to how much insulin the pancreas produces and what the insulin resistance levels are. It's that which fundamentally defines the treatment required, not some arbitrary naming convention.
> 
> Andy


I would normally agree, however the NHS uses arbitrary names to decide the level of support. For instance a type 2 will not get a testing kit/strips at most GP's


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## Steff (Oct 3, 2010)

ypauly said:


> I was diagnosed type1 last october, My GP, DSN and a consultant all sat with me going through blood test results and all said type 1.
> 
> But some nurse at the new practice I have gone to knows a lot more
> 
> ...



So in theory you could of been taking the wrong meds for a year?
Very confusing for you paul one person telling you your t1 now your being told your t2, abit of a wait til december what is happening in the meantime?


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## Andy HB (Oct 3, 2010)

ypauly said:


> I would normally agree, however the NHS uses arbitrary names to decide the level of support. For instance a type 2 will not get a testing kit/strips at most GP's



I see your point.

I wonder how many more Type 1's will be reclassified then?!! 

Andy


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## ypauly (Oct 3, 2010)

Steffie said:


> So in theory you could of been taking the wrong meds for a year?
> Very confusing for you paul one person telling you your t1 now your being told your t2, abit of a wait til december what is happening in the meantime?



I'm doing something right as my sugar levels are excellent!

It was her statement that if diagnosed as an adult you must be type 2 that concerned me. She didn't have any records nor did she have blood test results, But she was adament she was right and that I shouldn't question her knowledge.
I thought it was funny that she didn't need to know if I was producing insulin and in what amounts also keytones and all the other associated factors were all irellevent, It's age that matter lol


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## Andy HB (Oct 3, 2010)

Steffie said:


> So in theory you could of been taking the wrong meds for a year?
> Very confusing for you paul one person telling you your t1 now your being told your t2, abit of a wait til december what is happening in the meantime?



I'd be gobsmacked if that was the case. Surely people are treated based on physical symptoms rather than naming conventions?

I stand back and wait to be smacked in the gob 

Andy


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## Steff (Oct 3, 2010)

ypauly said:


> I'm doing something right as my sugar levels are excellent!
> 
> It was her statement that if diagnosed as an adult you must be type 2 that concerned me. She didn't have any records nor did she have blood test results, But she was adament she was right and that I shouldn't question her knowledge.
> I thought it was funny that she didn't need to know if I was producing insulin and in what amounts also keytones and all the other associated factors were all irellevent, It's age that matter lol



Surely she cant just change your whole entire diagnosis without referring to your notes etc etc..id be walking around like a headless chicken questioning everything thats happened in the last year if it was me lol.I mean you do suffer hypos  and ketones dont you?


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## Adrienne (Oct 3, 2010)

ypauly said:


> I'm doing something right as my sugar levels are excellent!
> 
> It was her statement that if diagnosed as an adult you must be type 2 that concerned me. She didn't have any records nor did she have blood test results, But she was adament she was right and that I shouldn't question her knowledge.
> I thought it was funny that she didn't need to know if I was producing insulin and in what amounts also keytones and all the other associated factors were all irellevent, It's age that matter lol



Oh dear, she is very wrong though.   Type 1 can happen to anyone under the age of 40 and tests needs doing sometimes to decide whether 1 or 2, think the c-peptide test but that is hard to determine to begin with as a type 1 could be in honeymoon and therefore producing.   

However there are a few adults over the age of 40 who do also get type 1, but it is rare but does happen.

I think your nurse needs some retraining and if I were you I wouldn't be going anywhere near her for any diabetes care and stick with your consultant and DSN at the hospital.

We had a GP who tried to tell me he needed to change things (on our pump which he had never seen before mind you) as no diabetic should ever have hypos.   I told him we were under the best hospital in the UK and he could stick it and I changed surgeries.  Stupid, dangerous idiot !


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## Robster65 (Oct 3, 2010)

Really worrying. At least my DSN at the GPs admitted she didn't know everything and passed me on to the hospital.

They'll have a lot of other problems if her knowledge is limited to
type 1=young
type 2=old+overweight.

Good luck with it all. It may be an interesting ride ! 

Rob


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## ypauly (Oct 3, 2010)

Firstly she isn't I repeat ISN'T a DSN, she is a normal practice nurse, she was filling in a medical history survey on the doctors system (I don't know if this changes diagnosis) But I will check when I see the doctor.

My notes could take weeks to be transfered from my previous GP and until then I am told as long as I have a printout of what they prescribed it will be repeated.

I was just dumbstruck by her arrogance, to the point it was hilarious



It will be interesting.


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## Northerner (Oct 3, 2010)

She is completely wrong. How do I know? Well, because I was diagnosed Type 1 (and I most DEFINITELY am!) at the age of 49. So what she states as being an absolute truth is absolute poppycock! 

The type of diabetes you have can have very different causes. Type 2 is generally caused by insulin resistance, which in turn may result in insulin insufficiency if the pancreas gets 'worn out' by trying to pump out gallons of insulin to try and overcome the resistance. In this latter case, you will still have the insulin resistance, so may need to inject large amounts of insulin until you have improved your sensitivity by the use of diet, exercise and possibly additional meds like metformin.

Type 1 is an autoimmune attack on the beta cells of your pancreas, which causes them to fail and stop producing insulin. Often, some insulin production remains for a while, particularly in adults, so the injected doses may be very small. A catastrophic event, like succumbing to a virus, can wipe out the beta cells completely, although it is possible that some may regenerate. This is what happened to me - slow decline with symptoms, but 'managing', then a stomach virus that landed me with DKA in hospital.

Trust what the consultant says Paul, not what this ill-informed nurse asserts!


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## scootdevon (Oct 3, 2010)

*Just goes to show they dont know everything ie consultants 'consults previous cases and books' and gp generally practice and nurses nurse so go figure thats just my opinion  *


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## ypauly (Oct 3, 2010)

She also told me I was 8kg overweight!! I figured this was fairly normal till she started to give me a long lecture. So I asked if she wanted to race and said she could chose the distance.


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## Northerner (Oct 3, 2010)

ypauly said:


> She also told me I was 8kg overweight!! I figured this was fairly normal till she started to give me a long lecture. So I asked if she wanted to race and said she could chose the distance.



Haha! Love it!  Seriously, this person should not be giving out advice to anyone!


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## katie (Oct 3, 2010)

This nurse is an idiot. You should tell one of the doctors what she said, I'm sure they'd have something to say about it


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## Twitchy (Oct 3, 2010)

ypauly said:


> She also told me I was 8kg overweight!! I figured this was fairly normal till she started to give me a long lecture. So I asked if she wanted to race and said she could chose the distance.



 Great!! Wish I'd been a fly on that wall, nice one! Sounds like the numpty nurse at my practice is moonlighting... isn't it scary how utterly ill informed some health care 'professionals' are?!!


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## Mummyt (Oct 3, 2010)

We have a Nurse at our GP's surgery who is exactly the same! God - It really pi**** me off too.....Ever since I referred myself to Diabetes Clinic at th Hosp ital they have taken care of my Diabetes   Thanks to them too they found out my kidney probs too 
I still go to the same GP surgery , but I make da* sure I don't get that nurse at all! The surgery is great and I have a fantastic GP

Hope you get things sorted 
Hugs Moxx


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## HelenM (Oct 3, 2010)

I was diagnosed in my 50s, I've heard of  a person developing type 1 in his 80s!


> According to JDRF, the world's largest charitable funder of research leading to a cure for type 1 diabetes and its complications,  *half of those diagnosed each year with type 1 diabetes are adults*



http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=D7461A82-1279-D3DC-F933E79F1AF9FC41

A 2005 study of diabetes diagnosis in Italy also showed that type 1 is not rare in older people. 


> Risk of type 1 diabetes between age 30 and 49 years is similar to that found in the same area between age 15 and 29 years. Further studies are required to allow geographical comparisons of risks of both childhood and adulthood autoimmune diabetes, the latter being probably higher than previously believed.http://care.diabetesjournals.org/content/28/11/2613.full.pdf


  and that study was only looking at the incidence up to age 49 . There were 2 age groups of peak incidence 10-14 and 45-49.

In some ways you can't blame your nurse, so many sources of information, including from official sources, stress that type 1 normally develops in childhood(untrue according to the Italian data), The idea that it can develop later seems to be almost dismissed .  At best they say something like this from  Diabetes UK ' Type 1 diabetes can develop at any age but usually appears before the age of 40, and especially in childhood.'
It was sources of mis-information like this that made me ignore symptoms (I didn't fit  what I read for t1 or t2) By the time I saw a doctor, I was dreadfully underweight and started having breathing problems when I tried to exercise   My GP was fortunately better informed than your nurse and sent me straight to the specialist at the hospital.


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## Northerner (Oct 3, 2010)

I wrote a poem on the topic, 'Too old for Type 1!':

http://diabetespoetry.blogspot.com/2010/10/too-old-for-type-1.html


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## ypauly (Oct 3, 2010)

Northerner said:


> I wrote a poem on the topic, 'Too old for Type 1!':
> 
> http://diabetespoetry.blogspot.com/2010/10/too-old-for-type-1.html


Tiz very good sir


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## casey (Oct 3, 2010)

I was also diagnosed type 1 , two weeks before my 50th birthday.


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## tracey w (Oct 3, 2010)

ypauly said:


> I'm doing something right as my sugar levels are excellent!
> 
> It was her statement that if diagnosed as an adult you must be type 2 that concerned me. She didn't have any records nor did she have blood test results, But she was adament she was right and that I shouldn't question her knowledge.
> I thought it was funny that she didn't need to know if I was producing insulin and in what amounts also keytones and all the other associated factors were all irellevent, It's age that matter lol



This is so annoying to me  Initially i was told by gp i was type 2 purely because of age, I was 41

I knew nothing about diabetes and was given glicazide, and consequently ended up in hospital a week later, where later blood tests proved i was indeed a type 1.

Of course type does not matter, its treatment, but ignorant gps who assess diagnoses purely on age is not just wrong but dam right dangerous.


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## tracey w (Oct 3, 2010)

Northerner said:


> I wrote a poem on the topic, 'Too old for Type 1!':
> 
> http://diabetespoetry.blogspot.com/2010/10/too-old-for-type-1.html



Loved it


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## sugarfreerach (Oct 3, 2010)

ive a similar story, basically ive been type 1 for 5 years, since i was 21.  Been at the same drs surg throughout until they basically had enough of me not knowing what i was doing and palmed me off on the hospital (best decision they ever made!) 3 years ago i had 3 monthly bloods done and received a letter from them stating to make an appointment straight away to see a doctor, quite urgent.  So i did and was quite worried, thinking what have they found?!! 

Anyway i sit in front of the doctor and he tells me that my sugars are quite high.  I say well yes, Im diabetic type 1. He says pardon? Are you? How long have you been diabetic? I say for around 2 years.  He looked very embarrassed. Then he says "right well i think im going to refer you to (insert name of the consultant i was under)" to which i replied, "yes im already seeing him every 3 months, im about to go on pump" to which he then replied ah yes very good.  

idiots. I wont go to him now, all my diabetic care is through the hospital.


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## Northerner (Oct 3, 2010)

Astonishing Rach, truly astonishing! I bet he felt so embarassed after you'd gone - or at least I hope he did! Presumably he wanted to break it to you that you were diabetic!


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## sugarfreerach (Oct 3, 2010)

yeah i know! what astounded me was that i still had to wait 10 days for this appointment.


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## margie (Oct 3, 2010)

The 10 day wait was probably because due to your age they thought you were type 2........

Seriously if they had looked at your repeat prescriptions they would have known, and shouldn't the record be flagged in some way so that you are asked if you would like flu vaccinations etc.


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## sugarfreerach (Oct 4, 2010)

No i was 22 at the time, still in type 1 boundaries! ah well ive not seen him since, hope he's well...


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## jane (Oct 4, 2010)

I moved to a new area. I went to see my GP about my thyroid blood test results. When I saw my notes on the GP computer  I saw it read that I was type2, instead of type 1.I query it. My GP then ask me what aged I was diagnosed at,when I said 31 he said that I could not be type 1. I then told him that I was on the pump trial and before you could start it you had a blood test to make sure you are type 1. Next time I went to the GP,s my notes had been changedto type 1. So please do not give up .


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## novorapidboi26 (Oct 4, 2010)

back in the 'olden days', hope no on is offended, this mistake might of been made as they didnt really know themselves.........today though its just stupidity if the cant get it right.........


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## AlisonM (Oct 4, 2010)

What a bleeping fool! Mind you Doctor Idiot still reckoned I was Type 2 even after the tests proved otherwise, why? Because I'm in my 50s. Sigh! There's a section of the medical profession out there that seems to be stuck in the Dark Ages when it comes to diabetes and the treatment of same. I wouldn't mind, but they're let loose on us and just add to the stress and distress we have to live with. I hope you get your particular example straightened out soon Rach, I'd kick up a fuss if I were you.


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## novorapidboi26 (Oct 4, 2010)

Out of curiosity, do they confirm type with a blood test (eg autoimmune markers etc).........I was back in 1998 but it was farily obvious........??


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## ypauly (Oct 4, 2010)

I was going to reply that I am glad I wasn't the only one. But then I realised how stupid that is. I wish it was just me lol


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## HelenM (Oct 4, 2010)

OK I wrote a detailed answer but haven't posted it as it would probably bore!
There are tests for a variety of autoimmnune antibodies but although in most cases people have one or more of them they are not definitive. (some people with them don't have  obvious t1, some people without testing positive for them do)
There is also a test which shows how much insulin people are producing (c peptide) but again not definitive since people with long term type 2 can also have reduced insulin. (earlier on they normally  produce more than normal).
So docs look  (or should look) at the whole picture and symptoms. In younger people the development of T1 is rapid so it's relatively easy, with older people its more difficult as the development is slower.

Having said that I've just seen a video I'd never seen before of me taken a month before diagnosis. I looked dreadful, very thin, no muscles in my arms and very withdrawn from everything else going on.
Seeing that made me realise that I looked really ill (and  now I realise why    my daughter  was concerned enough to try to make me promise to go to the doctors).


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## Northerner (Oct 4, 2010)

HelenM said:


> ...Having said that I've just seen a video I'd never seen before of me taken a month before diagnosis. I looked dreadful, very thin, no muscles in my arms and very withdrawn from everything else going on.
> Seeing that made me realise that I looked really ill (and  now I realise why    my daughter  was concerned enough to try to make me promise to go to the doctors).



I know what you mean Helen. There's no record of how I looked, but I must have looked dreadful. My BMI was around 17, now it's around 23!  I imagine it was quite a shocking sight to my friends who visited me in hospital, and it took around a year before the weight started going on again properly - I remember my neck, in particular, went very scrawny.


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## sugarfreerach (Oct 4, 2010)

i know! my friend who took me to hospital on diagnosis said i looked worse than some of his customers- He's an undertaker! ha ha


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## Pigeon (Oct 4, 2010)

I got loads of compliments after I was diagnosed and started taking insulin, i.e. was feeling better and regaining weight. But then they'd say "Yeah, you looked terrible when I saw you two months ago..."


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## trophywench (Apr 29, 2012)

Sorry to drag this ancient thread up from the depths - I was just doing a forum search for c-peptide (could have sworn somebody had done a trial giving diabetics c-peptide - fairly recently - and that's what I was trying to find - when I saw the title of this thread I simply had to open it and have a read - I went WHAAAAAAAAAAAAAAAAAAATTTT?  LOL)

I find this extremely scarey - they walk amongst us, hold positions that affect our lives and make decisions about us based on their own knowledge.


Could I please have a quick synopsis of 'What happened next?' Paul ?


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## slipper (Apr 29, 2012)

I got to page 3 before I glanced at the date


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## Northerner (Apr 29, 2012)

slipper said:


> I got to page 3 before I glanced at the date



My poem on the subject:


Mr Jenkins? Your appointment has been rearranged,
And since you?ll have turned 40, your diagnosis has changed!
We know that we told you that you were Type 1,
But now you?ve got older, I?m afraid that is wrong!

Type 1 diabetes affects only the young,
And you?ve got a foot on the middle-aged rung ? 
On the ladder of life, I?m afraid you?re too high,
And your fountain of youth is decidedly dry!

So, because you?re too old, you?ve been reclassified,
There?s no point in complaining, though many have tried!
You?ll be very pleased to learn that you?re a Type 2,
That?ll be cheaper for us, if not better for you!

You won?t need to test, so you won?t need those strips,
And you?ll no longer suffer those low sugar dips!
We?re withdrawing your insulin, you?ll be diet-controlled?
What?s that? Don?t blame me sir ? it?s because you?re too old!

 (c) Northerner 2010


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## Robster65 (Apr 29, 2012)

This is the sort of thing that makes me wonder why they want to develop higher tech solutions when some of the people 'looking after us' haven't moved on from leeches and humours.

Frogmarch them into a classroom and force them to learn something new or take away their first aid badges!! 

Thank you TW for ressurecting this thread. I feel better for that.

Rob


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## slipper (Apr 29, 2012)

This diet business amazes me in that type 2's should eat _plenty_ of  starchy carbs, despite the mass of evidence, this from very intelligent peeps, who obviously slavishy followold doctrine, why? 

I'm 68 now, and I am trying to get all my problems sorted before I am "too old" for treatment, not sure what that age is though, but must be near it.

At least with diabetes, there is a reaction and some advice from professionals, beit right or wrong,  sad to say if I mention my ME, the jaw drops and their eyes glaze over, they just dont have a clue.


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## ypauly (Apr 29, 2012)

trophywench said:


> Sorry to drag this ancient thread up from the depths - I was just doing a forum search for c-peptide (could have sworn somebody had done a trial giving diabetics c-peptide - fairly recently - and that's what I was trying to find - when I saw the title of this thread I simply had to open it and have a read - I went WHAAAAAAAAAAAAAAAAAAATTTT?  LOL)
> 
> I find this extremely scarey - they walk amongst us, hold positions that affect our lives and make decisions about us based on their own knowledge.
> 
> ...



Well based on the nurses advice the GP initially refused my insulin, only after an argument with the wife was it prescribed, we then had difficulty getting the other items on my prescription as it was the stuff they usually prescribe(lancets e.t.c).

It did all go well eventually but it took the consultant to sort it. Soon after I moved house again and went back to my old GP's and we all lived happily ever after.

Worrying as when NHS changes take place this GP will have more control but will listen to a practice nurse that knows very little about diabetes.


To be fair to them though, when I was advised to try the pump the new consultant noticed that on my notes I had never been officially diagnosed yet treated as a type 1 since being hospitalised in october 2009. An official diagnosis was required for pump therapy and both consultants (co-incidently at the same clinic at the same time) agreed type 1 it is and appologised for any confusion. 

I can only assume that somewhere along the lines my notes had been cocked up as you have to be type1 for DAFNE which I had also done.



Gettin used to the pump now, even got the software to work.


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## trophywench (Apr 30, 2012)

Phew!

Actually now you say, I actually remember the bit about your wife arguing onwards, LOL  It was just that I didn't remember this thread.

Although most people would start another thread with the new, news - as you evidently did - it was a tad scarey finding this one unconcluded !


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## lizabetic (May 1, 2012)

Maybe I should try for a pump and they might get round to correctly diagnosing me  

I also had to argue with a practicing (?) doctor once that there WAS such a thing as slow-onset type 1 diabetes. Daft fool "]


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## Northerner (May 1, 2012)

lizabetic said:


> Maybe I should try for a pump and they might get round to correctly diagnosing me
> 
> I also had to argue with a practicing (?) doctor once that there WAS such a thing as slow-onset type 1 diabetes. Daft fool "]



I'm sure it wouldn't take much research from 'approved' medical sources to confirm that you weren't making it up!  Having said that, I'm sure they do get told a load of baloney by patients, but the skill is in being able to realise when the patient might actually know what they are talking about. I'm currently reading an excellent book on my Kindle called Sick Notes: True Stories from the GP's Surgery - very funny, but also brings it home to you what it must be like being a GP and what they often have to put up with. I'll write a proper review of it when I've finished it, but well worth the ?1.75 I paid (paperback is ?6.50!).


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