# Whats the worst advice you have been given?



## megga (Jan 13, 2013)

As the title says. I'll kick of
8 years ago when i was first diagnosed, the nurse at my old doctors ( i dont think she was properly trained for the care of diabeties) told me, when i have a hypo "eat a mars bar and drink a bottle of lucozade" and then "Dont you worry pet, i've not lost a patient to diabeties, and i dont intend to start"

Now i laugh at it


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## Northerner (Jan 13, 2013)

Blimey! Nothing to match that (fortunately!), my care has been pretty good. When I was diagnosed I received some excellent care which really set me up well - might have been partly due to the fact that I was diagnosed in hospital so got to see 'proper' DSNs from the start - I quickly came to realise that there was a huge contrast between what they know about diabetes and my practise nurse. My GP is good too - she listens and understands that I live with this and therefore know myself and my diabetes better than she does, but will help with any gaps in my knowledge by trying to find answers - she's not one of those arrogant types who acts as though all patients are stupid and should just do as they are told (often according to some out-of-date textbook they read years ago).

I suppose the most irritating piece of advice was a stand-in at one of my annual reviews who insisted that there was no lower safe limit for cholesterol, and even though my HDL and total chol were perfectly fine he insisted I should be taking statins. My normal consultant has never pushed me to take them.


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## pippaandben (Jan 13, 2013)

In retrospect about 4 years ago after having had a blood test following a showing of sugar in my urine " you are only showing slight signs of diabetes so there is nothing to worry about".
So 20 months ago firmly diagnosed Type 2 and have rapidly gone through all oral medication, have been on insulin mix for 3 months and this week go to MDI - thank goodness. Angry with the knowledge I now have due to internet and in particular this site that life could well have been a lot easier if treated then - even though it may well have progressed in a similar timespan. But at what damage to my body?


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## LeeLee (Jan 13, 2013)

Eat more salt... when what I really needed was to stop taking bendroflumethiazide.


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## Pumper_Sue (Jan 13, 2013)

I was told by a lady who was employed to do ultra sound scans, that I would be a lot better off using diet and exercise to control my diabetes instead of having injections or a fancy pump. 

I gently pointed out that as I had type 1 diabetes which is an autoimmune  condition and there wasn't a cats chance in hell of doing that.
I was told that only children had type 1 diabetes.  So I pointed out that as I had never grown up then it stands to reason I have type 1.
Didn't like to upset her any more by telling her that 2013 I would have been on insulin for 48 years.


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## trophywench (Jan 13, 2013)

Some years ago in response to my comment (on MDI with an I:C ratio of 1u:10g) that every weekday I had the very tip of a flat teaspoon of sugar on my one morning Weetabix, to handily bump the carb count up to 20g, surgery nurse went ballistic and screeched in my face with her eyes bulging

*You* know just as well as *I *do that we (she was T1 since childhood) can never, *never*, *NEVER* *ever* have any sugar at all !   

And when I protested that wasn't true, 'everyone' said so these days, she demanded 

Who ARE these people? - give me their names and you can be sure I'll soon put THEM right!

So I reeled off all the people I could think of, diabetes consultants past and present, DSNs ditto, their addresses, the Head Honcho at DUK (and the whole organisation LOL) and I did this all chatty like 'not sure if Rowan Hillson has actually said it, in so many words, but anyway she endorses it' - she shut up.  And changed the subject.

I always wondered if she knew who Rowan Hillson was? LOL

Of course you can never avoid sugar anyway no matter how hard you try, although OK you should try and avoid adding it if you don't absolutely have to.

But frankly if my diabetes was so uncontrolled a teensy amount like that was going to make my legs drop off, then they'd have dropped off a very long time ago, wouldn't they?

The other good one, last year in asking the Head of my GP practice who I'd gone to see about summat else (appt with anyone, please thing and I just thought, oh he's the most senior so I'm sure he could do this, as opposed to making another appt to see the D one just for this) to increase my strip repeat scrip from 150 to 200 - he told me I'd had D a long time now and most people can get by only testing a couple of times a week, or once a day ........


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## DeusXM (Jan 13, 2013)

The diet advice is usually the most misguided. The worst advice I've ever been given is that plenty of orange juice at breakfast is fine as it's fruit and that I must never skip a meal or snack. Oh, and those meals should always be based around a starchy carb and whatever else I have with it should just be for flavouring.

Actually, no, scratch that. The worst advice I was ever given was I shouldn't ever drink because I have diabetes.


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## Twitchy (Jan 13, 2013)

Worst advice: 'ketones won't harm the baby' 
Worst diagnosis: doc: 'I'm afraid you might be diabetic'
                          Me: 'gosh...lucky I've been on insulin the past 18 years then!' (actual diagnosis = underactive thyoid, nice to know they read the medical notes eh?! )
Worst care: 'We're not putting you on an insulin pump whilst pregnant because if anything goes wrong you'll sue us'
      ...right, so I guess I'll either have to throw my hands in the air & accept c*** control or continue waking myself up at 3 & 5 every morning to bolus to beat dawn phenomenon, plus struggling with correction injections throughout the day...  something that isn't working but is familiar so you don't think I'll sue if something goes wrong? 

I should say I've also had some very good experiences of care too...!


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## fencesitter (Jan 13, 2013)

Twitchy: "Worst diagnosis: doc: 'I'm afraid you might be diabetic'
Me: 'gosh...lucky I've been on insulin the past 18 years then!'"


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## Twitchy (Jan 13, 2013)

I couldn't help myself!!


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## trophywench (Jan 13, 2013)

Think I'd hve been much ruder than that, Twitchy!

At least "No sh-t, Sherlock ...... !"


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## FM001 (Jan 13, 2013)

Vote Conservative


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## Pattidevans (Jan 13, 2013)

Dietitian - "At least 60% of every meal should consist of carbohydrate"


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## ch1ps (Jan 13, 2013)

toby said:


> Vote Conservative



 Nice one


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## Ginnie (Jan 13, 2013)

I lost 2 stone in a month due to weeing in the night and not diabetes...... Or when in hospital and I made it very clear I had no idea what I can eat and being given a scone telling me just put a bit of jam on  you must laugh at these things.


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## Northerner (Jan 13, 2013)

Ginnie said:


> I lost 2 stone in a month due to weeing in the night and not diabetes...... Or when in hospital and I made it very clear I had no idea what I can eat and being given a scone telling me just put a bit of jam on  you must laugh at these things.



When I was in hospital there was no attempt whatsoever to monitor the food I was eating - the only guideline was whether the menu was marked with a 'D' meaning not suitable for diabetics. The only thing with a D was treacle pudding and custard, anything else was fine!  My blood sugar swung between 2 and 30 when I was in there!


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## Ginnie (Jan 13, 2013)

My main advice was just a bit of jam or dont bother choosing a meal your room is last and theres usually nothing left..... I didnt get under 20 while in hospital and I now know why whqt made it even better the head nurse would spend a good 5 minutes telling me how I wasnt helping by eating the wrong foods...... I.slept alot in hospital


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## MaryPlain (Jan 13, 2013)

Practice nurse at the GP surgery: walking uphill to the surgery will lower your blood pressure, and your pulse rate. 

I kid you not. She actually believed this.


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## happydog (Jan 14, 2013)

Worst bit for me so far is "Don't bother with testing your blood at home, your annual review HbA1c test is the only one that counts and is quite sufficient.  This is why we don't give meters to D2's because they become obsessed".  Of course I am continuing with my obsessive testing.


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## Northerner (Jan 14, 2013)

I was told there is no limit to how low your cholesterol can go and be safe, despite the fact that cholesterol is essential to life...


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## Tezzz (Jan 15, 2013)

I was told not to test my BG by the nurse at the docs surgery...

Then I get asked how do I keep my HbA1c below 6%? Reply: I test and if my BG is too high I walk (some of) it off.


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## VanessaK (Jan 15, 2013)

After I had been to my docs for a blood test on the Friday, the next day I had a doctor chasing me to go to A&E as my blood sugers were 30+ with keytones...

The A&E doc didnt get the procedure right and didnt admit me that weekend his advice to me was don't eat chocolate for the rest of the weekend! lol

Subsequent visit to my own GP on the Monday meant a speedy trip back to hospital and admittance....(However that A&E doc did ring me to check I was ok......think this may have been due to the consultant prob telling him off eek)


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## Northerner (Jan 15, 2013)

VanessaK said:


> After I had been to my docs for a blood test on the Friday, the next day I had a doctor chasing me to go to A&E as my blood sugers were 30+ with keytones...
> 
> The A&E doc didnt get the procedure right and didnt admit me that weekend his advice to me was don't eat chocolate for the rest of the weekend! lol
> 
> Subsequent visit to my own GP on the Monday meant a speedy trip back to hospital and admittance....(However that A&E doc did ring me to check I was ok......think this may have been due to the consultant prob telling him off eek)



Ah, so he thought it was just chocolate you should avoid then? But you were fine to eat as many jelly babies as you liked?


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## VanessaK (Jan 15, 2013)

Ahh what is funny is that after i got home from A&E and his "advice" my housemate had bout me a chocolate eclair to cheer me up ! lol


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## Northerner (Jan 15, 2013)

VanessaK said:


> Ahh what is funny is that after i got home from A&E and his "advice" my housemate had bout me a chocolate eclair to cheer me up ! lol



Oops!


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## AlisonM (Jan 15, 2013)

I was told not to test my bgs as it does no good and "people like you get obsessed". Eh?


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## bennyg70 (Jan 15, 2013)

AlisonM said:


> I was told not to test my bgs as it does no good and "people like you get obsessed". Eh?



Yep apparently I'm obsessed and its no good for me. I should go with the age old advice as a type 1. 1 test per day. Day 1 before breakfast. Day 2, after breakfast, day 3 Before lunch etc etc etc. Ive been told this by numerous doctors. I think they assume I eat the same thing every single day. Hence they then try and limit my test strips.

A little mathematical scribble and A note from the DVLA and their driving advice (Plus a good session on point making about how much I drive) soon lifting that limit. But I still always get the "Your poor fingers".


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## pgcity (Jan 15, 2013)

Just before I post this remember that in August all the junior docs start on the wards for the first time.

I was diagnosed in August and had just left intensive care and was chatting to the junior doc abut what may have caused my diagnosis of type one at a positively ancient 43. He suggested I get tested for HIV?!

When I asked my gp how to go about it she laughed her head off


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## megga (Jan 15, 2013)

I was told that i had to feed the insulin, and have something to eat between meals


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## Pumper_Sue (Jan 15, 2013)

megga said:


> I was told that i had to feed the insulin, and have something to eat between meals



Well that is good advice if you are on mixed insulin or use NPH/Insultared or Isophane as one of your insulin's


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## lauraw1983 (Jan 16, 2013)

toby said:


> Vote Conservative





I'm not sure on any bad advice diabetes wise, I think most of mine has been fine tbh - plenty time still to hear crap advice though I guess!


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## LeeLee (Jan 16, 2013)

This one isn't related to diabetes, and comes second-hand...

My ex-husband has peripheral vascular disease.  At the hospital he was advised to give up smoking and take up drinking.  He's a recovering alcoholic!


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## Northerner (Jan 16, 2013)

LeeLee said:


> This one isn't related to diabetes, and comes second-hand...
> 
> My ex-husband has peripheral vascular disease.  At the hospital he was advised to give up smoking and take up drinking.  He's a recovering alcoholic!



Oh my!


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## astbury1 (Jan 16, 2013)

I was told yesterday that as I have only just been diagnosed(6 months ago) that Im not in the group of diabetics that would hypo? !? My sugars arent great but i have had the odd 4.6. I didnt respond to it and just was amused when I walked out. Apparantly you have to have diabetes for serveralyears for this to happen!


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## Northerner (Jan 16, 2013)

astbury1 said:


> I was told yesterday that as I have only just been diagnosed(6 months ago) that Im not in the group of diabetics that would hypo? !? My sugars arent great but i have had the odd 4.6. I didnt respond to it and just was amused when I walked out. Apparantly you have to have diabetes for serveralyears for this to happen!



What a crock!  I had a hypo in hospital a couple of days after diagnosis, and also experienced my first 'at home' hypo about a week or two afterwards. I had quite a lot of hypos in my first 6 months as my insulin requirements dropped quite rapidly as I recovered my health and I couldn't quite keep pace with the reductions


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## randomange (Jan 16, 2013)

When I was 11 I had a vomiting bug, and the emergency GP told my parents to stop giving me my insulin as "she's not eating anything, so insulin will just make her go hypo" 

Since this was back in the days when testing wasn't as common and my parents still believed that doctors knew best, my parents followed his instructions and I ended up in hospital for a week with DKA...


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## trophywench (Jan 16, 2013)

Ditto Northie, although mine were all diagnosed as phantom ones bearing in mind I was 'new' and it took 2 days to get a blood test result and the instant wee ones at those times didn't tell us anything helpful, well they wouldn't have, would they? LOL


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## randomange (Jan 16, 2013)

trophywench said:


> Ditto Northie, although mine were all diagnosed as phantom ones bearing in mind I was 'new' and it took 2 days to get a blood test result and the instant wee ones at those times didn't tell us anything helpful, well they wouldn't have, would they? LOL



LOL, I can just imagine it! "You don't have any sugar in your urine, that's great!"


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## Northerner (Jan 16, 2013)

randomange said:


> When I was 11 I had a vomiting bug, and the emergency GP told my parents to stop giving me my insulin as "she's not eating anything, so insulin will just make her go hypo"
> 
> Since this was back in the days when testing wasn't as common and my parents still believed that doctors knew best, my parents followed his instructions and I ended up in hospital for a week with DKA...



Scary!


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## Steff (Jan 16, 2013)

Worse bit of advice is definitely join this forum, all these people hounding me to attend meets gets v annoying :


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## Northerner (Jan 16, 2013)

Steff said:


> Worse bit of advice is definitely join this forum, all these people hounding me to attend meets gets v annoying :



Why on earth have we encouraged you? 
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Because you're brilliant company!


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## Chatterbox (Jan 19, 2013)

"Don't eat normal" by a well meaning friend.   So now I just stick everything in my ear.


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## Lizzzie (Jan 19, 2013)

I took away from my first diabetic consult that my sugar level should be between 4 and 8 all the time.   Not sure its what the nurse meant me to take away as the rest of the time they were brilliant.

But I was testing a very short time after a meal, getting a 9 and correcting. Couldn't work out why I was hypo so much. It took me ages to 'unlearn' this.


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## LeeLee (Jan 21, 2013)

When my daughter was about 9 months old, an old-style health visitor told me not to feed her between 6pm and 6am.  She was never overweight (crept up the same centile throughout childhood) and I knew that a small bowl of porridge at 8pm would give me a night's sleep.  So I nodded and smiled, then carried on with what worked for our family.


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## DeusXM (Jan 21, 2013)

Lizzzie said:


> I took away from my first diabetic consult that my sugar level should be between 4 and 8 all the time.   Not sure its what the nurse meant me to take away as the rest of the time they were brilliant.
> 
> But I was testing a very short time after a meal, getting a 9 and correcting. Couldn't work out why I was hypo so much. It took me ages to 'unlearn' this.



Erm.....that's actually correct. Anything over 7.2 is complication causing. I agree it's hard to manage but you shouldn't really be spiking as high as 9 after eating. Correcting afterwards isn't the right way to go about it - a better way is to inject earlier so your insulin keeps pace with your food intake. Or alternatively, eat foods that don't spike you.


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## trophywench (Jan 21, 2013)

Lizzzie

If Deus is correct it's a bit odd then, that when you are preg they tell you the top end is 7.8, if they know very well that will cause you complications, don't you think?

Trouble is there isn't a script is there - I mean there isn't one book that sets it all out for us in black and white and that's precisely it.  And every different source you look at, there's a different answer.

Have to confess, I rarely test at 1 or 2 hours after a meal.  Unless I feel iffy or something - so I don't actually know what mine ever go up to at that point.  But then I am aware I'm a bit too laid back.


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## everydayupsanddowns (Jan 21, 2013)

While 4-8 permanently is a laudable aim, I know that for me if I felt that it was a cast iron requirement for future health I'd drive myself mad. Frankly I'm OCD enough as it is.

I find it easier to aim for a target (whatever that is) that I actually 'own' rather than one I feel is handed down from on high.

As to the development of complications - I suspect that there is a great deal of variability here as there is with so much D-related. One person may get retinopathy in 5 years with seemingly great numbers, another might have had a very wayward period and yet excape apparently unscathed.

I've reconciled myself to just trying to do the best I can on an ongoing basis, to keep levels as near to non-D as I can without driving myself demented in the process. At any point that might be trying to get fewer 14s, or 12s or 10s, but acccepting that some of those will just 'happen' and I can't expect perfection all the time.

Generally, for me that means trying to keep the number of double figures and hypos as low as I can, ideally with a nicely compact set of numbers and low SD. But hey, sometimes life, circumstances and lovely food opportunities just happen.


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## astbury1 (Jan 21, 2013)

I was told  last week that I am not in the group of people that will have hypos? Im type 1 on insulin. Apparantly you have to of had diabetes for a very long time to get those!   This was at the doctors


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## trophywench (Jan 21, 2013)

I'd have offered immediately to shoot Xu in and not eat, THEN let them tell me I'm not in the group ....

Sorry, I'd have to write and complain about that.  Imagine if they said it to someone immensely stupid?


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## astbury1 (Jan 21, 2013)

Yeah I know! Am glad am switched on! He was the doctor that told me there wasnt such a HBA1c as 8.1. I know theyve changed however he is an older doctor so surely he must of known that they used to be different! Am glad I was diagnosed under the hospital and have a more switched on diabetes team!










trophywench said:


> I'd have offered immediately to shoot Xu in and not eat, THEN let them tell me I'm not in the group ....
> 
> Sorry, I'd have to write and complain about that.  Imagine if they said it to someone immensely stupid?


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## caffeine_demon (Jan 21, 2013)

LeeLee said:


> When my daughter was about 9 months old, an old-style health visitor told me not to feed her between 6pm and 6am.  She was never overweight (crept up the same centile throughout childhood) and I knew that a small bowl of porridge at 8pm would give me a night's sleep.  So I nodded and smiled, then carried on with what worked for our family.



Maybe the Hv had your daughter confused with a Gremiln!


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## Tina63 (Jan 22, 2013)

About a year ago my son was advised by our GP to up his Lantus by 10, or even 15u in one hit so as to decrease his HbA1c dramatically before a hospital appointment the following week.  I dread to think what would have happened had we taken it up the full 15u in one go (he was on 25u at that point).  I'm afraid that made me conclude our GP knows absolutely nothing about T1.  Maybe a harsh assessment, but scary that he gave out that advice to someone young and who could have taken him at his word.  I was in on that consultation and didn't challenge it, but told my son to only creep up by 1 or 2u at a time and discuss it with his team the next week.


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## everydayupsanddowns (Jan 22, 2013)

Tina63 said:


> About a year ago my son was advised by our GP to up his Lantus by 10, or even 15u in one hit so as to decrease his HbA1c dramatically before a hospital appointment the following week.  I dread to think what would have happened had we taken it up the full 15u in one go (he was on 25u at that point).  I'm afraid that made me conclude our GP knows absolutely nothing about T1.  Maybe a harsh assessment, but scary that he gave out that advice to someone young and who could have taken him at his word.  I was in on that consultation and didn't challenge it, but told my son to only creep up by 1 or 2u at a time and discuss it with his team the next week.



...and even though an A1c is weighted towards recent weeks, I'm not sure that a week of crashing hypos would have reduced his a1c in just 7 days anyway!


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## sunflower_harvester (Feb 15, 2013)

Had been given Metformin by consultant as had put on weight and had some insulin resistance and was trying to get a prescription for strips from GP

GP: You don't need to be testing your blood. If they've given you metformin you must be a type 2
Me:No I'm a type 1
GP: No they've given you Metformin you're a type 2
Me: No definitely a type 1
GP: You're not, your type 2
Me: I was diagnosed at age 2. With ketoacidosis. Does that sound like a type 2 to you?
GP: It doesn't matter, you're on metformin your are definitely a type 2
Me: (getting irritated) Can I stop my insulin then?
GP: Yes you don't need it, you've got metformin

Good job I have a healthy lack of respect for diabetes advice from GPs


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## Northerner (Feb 15, 2013)

sunflower_harvester said:


> Had been given Metformin by consultant as had put on weight and had some insulin resistance and was trying to get a prescription for strips from GP
> 
> GP: You don't need to be testing your blood. If they've given you metformin you must be a type 2
> Me:No I'm a type 1
> ...



OH.MY.GOD!!!  That has to top the list!

(nice to hear from you again SH! )


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## robofski (Feb 15, 2013)

sunflower_harvester said:


> Had been given Metformin by consultant as had put on weight and had some insulin resistance and was trying to get a prescription for strips from GP
> 
> GP: You don't need to be testing your blood. If they've given you metformin you must be a type 2
> Me:No I'm a type 1
> ...



I think he needs a copy of Diabetes for Dummies   Just incredible!


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## anniehi (Feb 18, 2013)

*Fours the floor, or is it?*

When I was in hospital having had surgery to remove my Pancreas I had to rely on the ward nurses to control my diabetes because never having been diabetic before my operation I knew nothing about diabetes control. I had four hypos in two weeks through lack of care. One night I woke up shaking and my BG was 3 mmol and the nurse-in- charge, the rank of Sister, said to me " its not a hypo until your reading is 1mmol."  Not enough trained diabetic nurses on the wards.


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## Northerner (Feb 18, 2013)

anniehi said:


> When I was in hospital having had surgery to remove my Pancreas I had to rely on the ward nurses to control my diabetes because never having been diabetic before my operation I knew nothing about diabetes control. I had four hypos in two weeks through lack of care. One night I woke up shaking and my BG was 3 mmol and the nurse-in- charge, the rank of Sister, said to me " its not a hypo until your reading is 1mmol."  Not enough trained diabetic nurses on the wards.



Oh my goodness me!!!  Every HCP who ever has to deal with a person with diabetes ought to read this thread and realise how dangerous a little (or no) knowledge can be!


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## Tom Burke (Feb 23, 2013)

I was advised by a matron no less that if my blood sugar was less than 15  before meals I didn't need any insulin. And when I was first diagnosed the elderly sister told me to increase insulin if my blood sugar was low and decrease if high. Luckily there was a junior nurse behind her shaking her head


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## Northerner (Feb 23, 2013)

Tom Burke said:


> I was advised by a matron no less that if my blood sugar was less than 15  before meals I didn't need any insulin. And when I was first diagnosed the elderly sister told me to increase insulin if my blood sugar was low and decrease if high. Luckily there was a junior nurse behind her shaking her head



Frightening!  How can they get it so wrong, and how many people went away and did just as they advised? I shudder to think


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## AndyS (Feb 25, 2013)

The worst advice I have been given (diabetic and non diabetic)

After explaining to the DSN about the last hypo I had she wagged her finger at me and said "I hope you still took your insulin as normal" I really do hope she meant after I had sorted the hypo and had eaten...

The other one which isn't diabetic related is when I was having side effects from prescribed medication.  It always gave me a severely dry mouth in the morning causing my uvula to swell to 3 times its normal self..

I explained this to the locum Doctor who replied.... I know it's a bit unconventional but have you tried cellotaping your mouth closed when you go to sleep to stop your mouth going dry......

Andy


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## Northerner (Feb 25, 2013)

AndyS said:


> I explained this to the locum Doctor who replied.... I know it's a bit unconventional but have you tried cellotaping your mouth closed when you go to sleep to stop your mouth going dry......
> 
> Andy



That probably ranks up there with Alexander Fleming and Fred Banting as the great medical discoveries of all time!


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## AndyS (Feb 25, 2013)

Northerner said:


> That probably ranks up there with Alexander Fleming and Fred Banting as the great medical discoveries of all time!



I was like Mr Bean afterwards Alan.  An awkward laugh then said thank you Doctor.  I best not incase my asthma flares up during the night, would be a bit awkward explaining to the paramedics whilst gasping for breath how come I'm wrapped in cellotape


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## robofski (Feb 25, 2013)

AndyS said:


> I explained this to the locum Doctor who replied.... I know it's a bit unconventional but have you tried cellotaping your mouth closed when you go to sleep to stop your mouth going dry......
> 
> Andy



I know I shouldn't but that really made me laugh, that's what I'd expect a 5 year old to suggest!


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## AndyS (Feb 25, 2013)

Hi robofski

It's a good job I watched Blue Peter when I was younger and could see what a mess could be made with cellotape etc so I didn't do as suggested


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## robofski (Feb 25, 2013)

AndyS said:


> Hi robofski
> 
> It's a good job I watched Blue Peter when I was younger and could see what a mess could be made with cellotape etc so I didn't do as suggested



Ha ha, I wonder if the Doc got a Blue Peter badge and thought it was a medical degree


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